Yesterday I saw the rheumatologist - who sadly is about to retire. He said that the very positive lip biopsy and my immunology and symptoms mean that I have Sjogren's rather than RA as my primary disease. No surprises with this outcome but a certain amount of relief at at last having it confirmed by a specialist of his experience and calibre. He admitted that he rarely gets positive lip biopsy results like mine.
Treatment options seem limited for now because he feels the priority should be to rule out organ involvement before decisions are made about treatment. He is concerned that my worsening disequilibrium might indicate CNS involvement, so has arranged a brain MRI for me. He checked my lymph glands on neck, under arms and groin and found a hard area of swelling on my groin. He is rather concerned that my night sweats and this swelling might signify Lymphoma so I'm to have a full body MRI as well. Because the NHS is very beleaguered now there are long waits for everything including MRIs. So I will have to wait three months for the results from another rheumatologist, as mine will no longer be working there by then.
He said he didn't want to scare me more than necessary but thought it important that I realise that if I do have organ involvement of any sort then I will need a big gun biologic such as Rituximab. He said there is no modifying treatment that would help the small fibre neuropathy of Sjogren's - only symptomatic ones. He said SFN of Sjigrens normally goes so far but then settles at this level and doesn't either improve or progress. This was what the neurologist said too.
So I am concerned that, if nothing shows up on the scans I'll be left unmedicated - having already tried and failed to tolerate four DMARDs and I don't want more steroids. Which takes me to the very perverse position of almost wanting something to show up on the scans so that I can try Rituximab.
I'm so fed up with feeling stoned all the time and having fugue like moments when trying to navigate busy precincts or cross roads or feel I'm falling if I look up or to the side. It used to be a barely perceptible thing for me - just feeling of being slightly out of kilter. But now it's affecting my confidence a fair bit. I understand that he was concerned about this problem signifying CNS involvement but if it doesn't show up in scans then I'm left high and dry with only topical treatments now. But I've never seen an ENT specialist and I have periodic tinnitus now - surely it could be an autoimmune ear problem? Neuro said no because it only affects me when I'm walking or standing.
IViG wasn't mentioned by him and I was so addled by what he was saying about possible lymphoma. I'm not so worried about this myself because there could be lots of other reasons for a swelling on my groin and my neck and armpits were fine.
If anyone has experience of Lynphoma in the groin then I'd be interested to know how it was treated and what symptoms you had. Same with disequilibrium showing up in brain MRI.
There are many here that have had lymphoma, so hopefully one of the (or more) will pipe in. but until you have positive results for this, not worry...as the stress alone that you will be creating can cause you yet more problems.
Being that he is about to retire, he is obviously older...as for why he likely might have omitted IVIG as a possible course of action. There is a lot of documentation that IVIG can help SFN caused by Sjogren's...especially if caught in earlier stages (but improvement has even been recorded for patients having the disease for longer periods).
There is numerous threads on Neurotalk about IVIG for SFN...even recently discussed at length on this site.
I have CNS involvement including confirmed ganglionopathy...which is likely what he is concerned about. Sadly, my damage to the dorsal root ganglia is considered permanent...but I have had this for 20+ years that was never treated in early stages (or even in the first 5 years). The MRI's will be helpful....but I thought you already had MRI's done (at least brain)....am I right? I don't know if your country has access to the newer MRI/MRN which can look a the dorsal root ganglia or other spinal nerves. That would be best for you in this situation of possible CNS involvement, but it's still pretty new and rare.
There are many here that have also had Rituxan (Rituximab), so maybe you will get some input from these members as well...or start a thread specifically for this (of course you can search other threads as well).
Does your imaging dept have 'cancellation lists'...where you can be called for last minute cancellations and get in faster. In the US, we have these lists and it can really speed things up as many people cancel for various reasons and the hospital doesn't want to have open time slots so they call people who have requested to be on this list to see if they are available to come on short notice (usually same day or next day). it's worth asking about.
Sorry to hear about your news, but try not to fret just yet as you don't have confirmation yet. Your neuro would have said something had he thought you had ganglionopathy or other CNS involvement. What did your last MRI show?
Who do you see next?
And rituxan is now an option for treating Sjogren's directly, under the new Sjogren's guidelines. This is very recent info, though people have been using it for a while.
Thanks Anita. He is at the end of a long career but he was the one who finally worked it all out for me and seemed very on the ball. However I saw a young endocrinologist in the same are of the hospital this morning and he was fabulously up to date so I agree that the incentive to know all about newer developments and research might not be so great.
I'm actually not that worried that I will have Lymphoma. I guess worrying about Multiple Myeloma when the previous rheumy ruled out a connective tissue disease for me in January - but suggested in his letter that I may have malignancy or an endocrine problem - I've given up worrying too much. I'm incredibly tired though because these lousy sweats/ fevers keep waking me and also pomphries on my palm is terribly itchy plus the arthritis in my knuckles is really bad so I can barely fling off the very thin duvet or change my night shirt. Then once I finally manage to cool down I'm cold!
I did have an MRI of my brain 18 months ago in another hospital. He located the results and showed a trainee rheumatologist but I wasn't able to hear what he said properly. It was something about white matter and small vessel disease and my age but as the previous neuro said it was all normal for my 52 years I'm thinking that nothing much will have changed as I had this didequillibrium back then too. He said it was good to repeat these tests every 18 months using a different scanner in this hospital - slight implication that their scanner wasn't so great in the hospital up north!
I really don't like the neurologist here too much though as she just told me to take up tai chi bad get used to the sensation I've lost so far. And she said I looked too well to have a systemic connective tissue disease, which is complimentary if someone knows you well butbthiscperson had never clapped eyes on me before and I felt she should have known better? I see her again mid October and hoping she has changed her attitude thus time. I think the rheumy will fast track the MRIs but he says the next rheum will need the neuro's clinical letter before acting on the information. I guess that they need her to interpret the MRI results and this is why he's putting everything on hold in rheumatology for three months. If I get the MRIs done sooner then maybe I can expedite my next rheumy appointment. They do seem very obliging in this hospital but neurology, rheumatology, gastroenterology and Gynaecology all have massive waiting lists and cancellations are very rare.
Quote from: warmwaters on August 25, 2016, 02:17:13 PM
And rituxan is now an option for treating Sjogren's directly, under the new Sjogren's guidelines. This is very recent info, though people have been using it for a while.
I think it depends which country warmwaters. He did seem to be saying he'd like me to get onto Rituximab but I think they have to make a strong case for funding purposes. I suppose it will depend on who his successor is. I'll fight my corner of I have to but very much hoping, after fighting for so long - that I don't have to.
Mat51 ..... I am glad you are finally getting some answers.
I know we are in different countries so different rules for drug eligibility apply.
In the US, if a person has RA, either sero-positive or sero-negative, Rituxan is approved for treatment. So, if we have a diagnosis of RA, we can get Rituxan.
As Warmwaters noted, the new Sjogren's treatment guidelines (in the US) do use Rituxan for Sjogren's. However, Rituxan is not FDA approved for treating Sjogren's so Medicare or other government insurance recipients may still have a problem getting it approved for Sjogren's unless they have RA (or some other disease for which it is FDA approved). Private insurance may follow the guidelines and treat people with Sjogren's. Let's hope so.
So, I don't know what the rules are in England (I think that is where you live). If it is approved for RA, then you should be able to get Rituxan under your RA diagnosis.
Rituxan has been shown to help with some cases of neuropathy in Sjogren's, but it is not 100%. Rituxan has helped my neuropathy symptoms but I do not have CNS neuropathy. Mine is sensory polyneuropathy/ganglionopathy and SFN.
I am on Rituxan infusions and they have helped me immensely. I started Rituxan infusions last February and am in the middle of getting my second set of 2 infusions, 2 weeks apart right now. Rituxan has been a miracle for me. It has reduced my fatigue level tremendously and reduced my neuropathy symptoms considerably.
In the studies, I think IVIg has shown more benefit for neuropathy than Rituxans, especially for CNS involvement.
Rituxan was also shown to be of more benefit to people who have neuropathy related to vasculitis and/or cryoglobinemia. However, Rituxan did help some others with other forms of peripheral neuropathy.
I agree with Anita about the Lymphoma. While it is difficult not to be concerned, there is a good chance you do not have Lymphoma. In addition. my Rheumatologist said (and I have also read this information) that Lymphoma in Sjogren's is very amenable to treatment. In other words, if we have it, it is usually very responsive to treatment.
I hope you can get more answers and some treatment.
Quote from: MAT51 on August 25, 2016, 02:31:56 PM
Thanks Anita. He is at the end of a long career but he was the one who finally worked it all out for me and seemed very on the ball. However I saw a young endocrinologist in the same are of the hospital this morning and he was fabulously up to date so I agree that the incentive to know all about newer developments and research might not be so great.
I'm actually not that worried that I will have Lymphoma. I guess worrying about Multiple Myeloma when the previous rheumy ruled out a connective tissue disease for me in January - but suggested in his letter that I may have malignancy or an endocrine problem - I've given up worrying too much. I'm incredibly tired though because these lousy sweats/ fevers keep waking me and also pomphries on my palm is terribly itchy plus the arthritis in my knuckles is really bad so I can barely fling off the very thin duvet or change my night shirt. Then once I finally manage to cool down I'm cold!
I did have an MRI of my brain 18 months ago in another hospital. He located the results and showed a trainee rheumatologist but I wasn't able to hear what he said properly. It was something about white matter and small vessel disease and my age but as the previous neuro said it was all normal for my 52 years I'm thinking that nothing much will have changed as I had this didequillibrium back then too. He said it was good to repeat these tests every 18 months using a different scanner in this hospital - slight implication that their scanner wasn't so great in the hospital up north!
I really don't like the neurologist here too much though as she just told me to take up tai chi bad get used to the sensation I've lost so far. And she said I looked too well to have a systemic connective tissue disease, which is complimentary if someone knows you well butbthiscperson had never clapped eyes on me before and I felt she should have known better? I see her again mid October and hoping she has changed her attitude thus time. I think the rheumy will fast track the MRIs but he says the next rheum will need the neuro's clinical letter before acting on the information. I guess that they need her to interpret the MRI results and this is why he's putting everything on hold in rheumatology for three months. If I get the MRIs done sooner then maybe I can expedite my next rheumy appointment. They do seem very obliging in this hospital but neurology, rheumatology, gastroenterology and Gynaecology all have massive waiting lists and cancellations are very rare.
Nothing upsets me more than a doctor making some stupid comment about how good I look or that I look too good to be that sick...as if it minimalizes my medical conditions!! That is so wrong. I certainly hope she changes her tune next time she sees you and realizes she was incorrect about the seriousness of your condition. Is there any other neuro at your hospital?
IVIG would be your best bet...more documentation for improvement than Rituxan in regards to SFN/CNS resulting from Sjogren's. I hope the new one you see after the MRI's are completed will consider this. Actually, it should be the neuro that orders is...since it would be treating the neurological component of the rheumatic disease...but it could certainly be turned around to treat the root (Sjogren's). Probably best this way, as your neuro doesn't sound lie she'd be very helpful in ordering IVIG. Keep in mind that the longer this goes on, the more permanent the damage in regards to CNS/ganglionopathy. You have already dealt with this for a long time.
Ah yes, I remember now you mentioning the small vessel disease (age appropriate) on last MRI. It will be interesting to see if there is any change...likely not, but 18 months is a long time in terms of autoimmune process. it certainly needs to be repeated at this stage and with your new Dx. I hope they can get you in soon.
Can you describe your neuro symptoms...and are they treating you symptomatically at this point at all?
Anita my symptoms are mainly a type of dizziness that the neuro said is disequillibrium. For ages it has been quite subtle and similar to something I suffered in my late 20s for a while - just not feeling secure in my footing and struggling with doorways and navigation if there's no natural lighting. I suppose the feeling is of being mildly stoned all the time - without the pleasure - or in my case nausea and vomitting, as pot makes me very sick! It only affects me when I'm standing up or walking though - not a benign proximal vertigo type of thing at all. The neuro said this doesn't tarry with vestibular problems because it only occurs when I'm on my feet. But increasingly I find I have mild tinnitus and sound sensitivity and aslight motion sensation when seated too - but almost imperceptible so nothing like the walking trouble at all.
The only time that I really have the vertigo is if I look up at something - and then I feel I'm falling into space. And I generally do then lose my balance. Otherwise it's more subtle still but constant and I feel I have to constantly be on my guard when things around me are moving ie people, bikes, vehicles. If I have to turn round to look at someone or something then I need at least ten seconds to recompose myself - or rather realign. Like when a computer or tv slowly starts going out of focus I feel this symptom is slowly but surely getting worse - although it was severe when I was in New York a few years ago but that was because of the jet lag I think.
I actually had one of my moments the other day when the rheum pulled the curtain round me so I could pull my pants back up and get my shoes on. He carried on speaking and expected me to come back through the curtains but I panicked and couldn't get out for a moment and stumbled through with the feeling I would topple having bent down to push my dandies on. So he said sorry to me but it was a reality check for him and the junior doctor - as my husband observed. There's usually no natural lighting in these places and strip lights are the worst for triggering my disorientation I suppose.
The neurologist told me it was all about my proprioception and told me I needed to retrain my brain and take more exercise such as yoga and tai chi. She said it wasn't bad enough to warrant neuro physiotherapy. I've done these type of exercise classes in the past but am too busy and unsettled to commit to classes etc presently. I then failed my Romberg's as I invariably do and she observed some toe/ heel clumsiness - but said in her letter that she wasn't very concerned about either of these things.
So her letter was read by the rheumy and he asked me if I'd explained the extent of my troubles properly. I told him that yes I had but at this stage (April) she was fixed on the idea that my RA was the only problem and as this has remitted it wasn't progressive nerve damage - just leftover from early RA. She told me I was a lucky woman for having such mild RA. I asked her if she knew much about Sjogrens at the start of the consultation but she just waved her hand at me and said "of course I do - I see a lot of this! Not your problem though as you have RA and your bloods and tests don't support the idea of Sjogren's". The rheumy may have picked this attitude up from her letter and my brief account so I'm hoping her attitude will have changed now. I just said to him that she didn't have the latest blood results or lip biopsy so was going by previous rheumy who said I didn't have a connective tissue disease in his February letter. But she's a stubborn young-ish school prefect type so I won't hold my breath that she will change her perspective now!
Quote from: Jasper on August 25, 2016, 03:23:06 PM
Mat51 ..... I am glad you are finally getting some answers.
I know we are in different countries so different rules for drug eligibility apply.
In the US, if a person has RA, either sero-positive or sero-negative, Rituxan is approved for treatment. So, if we have a diagnosis of RA, we can get Rituxan.
As Warmwaters noted, the new Sjogren's treatment guidelines (in the US) do use Rituxan for Sjogren's. However, Rituxan is not FDA approved for treating Sjogren's so Medicare or other government insurance recipients may still have a problem getting it approved for Sjogren's unless they have RA (or some other disease for which it is FDA approved). Private insurance may follow the guidelines and treat people with Sjogren's. Let's hope so.
So, I don't know what the rules are in England (I think that is where you live). If it is approved for RA, then you should be able to get Rituxan under your RA diagnosis.
Rituxan has been shown to help with some cases of neuropathy in Sjogren's, but it is not 100%. Rituxan has helped my neuropathy symptoms but I do not have CNS neuropathy. Mine is sensory polyneuropathy/ganglionopathy and SFN.
I am on Rituxan infusions and they have helped me immensely. I started Rituxan infusions last February and am in the middle of getting my second set of 2 infusions, 2 weeks apart right now. Rituxan has been a miracle for me. It has reduced my fatigue level tremendously and reduced my neuropathy symptoms considerably.
In the studies, I think IVIg has shown more benefit for neuropathy than Rituxans, especially for CNS involvement.
Rituxan was also shown to be of more benefit to people who have neuropathy related to vasculitis and/or cryoglobinemia. However, Rituxan did help some others with other forms of peripheral neuropathy.
I agree with Anita about the Lymphoma. While it is difficult not to be concerned, there is a good chance you do not have Lymphoma. In addition. my Rheumatologist said (and I have also read this information) that Lymphoma in Sjogren's is very amenable to treatment. In other words, if we have it, it is usually very responsive to treatment.
I hope you can get more answers and some treatment.
Thanks Jasper - all good to know. I'm actually in Scotland rather than England so they have a different set of criteria for funding. But my Sjogrens was diagnosed using the ACR and EULAR criteria so it is all pretty similar. Good to know that Rituxan is working so well for you. Very grateful to you and others for talking me through this even if we are in different parts of the globe.
Oh my goodness MAT! Your description of your dizziness stuff! Those were my first presenting symptoms and it drove me nuts not beeing able to accurately describe it to the neuros! I had to leave two neuros in the dust, one was actually the chief neuro of the clinic! ENT doctors also found no problems. My current neuro at the very first visit, after asking me tons of questions, diagnosed me with acephalgic migraines based on my migraine history. We started on norytriptiline which took care of the dizziness/stoned feeling. When that stopped working we switched to topiramate which I still take. She also found that I was B6 deficient and had me start supplementing it plus a double dose of B2. It was such a relieve to no longer have that dizzy/stoned feeling! I still haven't figured out how I can have acephalgic migraine that literally never stops! Ever without medication! Unfortunately the past 6 month my balance issues, just like you describe, are getting worse! I'm constantly keeling over, but manage not to fall. Thankfully I'm using a cane currently because of my hip. My neuro doesn's take that serious either. I mean how accurate is taking a few steps back and forth in the exam room when the problem is in a normal environment with people and moving things, light changes, normal walking, sudden turns? They always forget about that! Same thing with the eye doctor! I think some of the balance and movement issues I have is due to my eyes. I never see well, which is partially due to dry eyes, and mostly I just see blurry or double. Yet when I do my vision check ups there is not much change. Again, in a normal environment I'm dealing with moving things, different lighting, textures. My brain just can't handle it. So everything is normal. Yeah right!
Quote from: Tharrell on August 26, 2016, 07:02:10 AM
Oh my goodness MAT! Your description of your dizziness stuff! Those were my first presenting symptoms and it drove me nuts not beeing able to accurately describe it to the neuros! I had to leave two neuros in the dust, one was actually the chief neuro of the clinic! ENT doctors also found no problems. My current neuro at the very first visit, after asking me tons of questions, diagnosed me with acephalgic migraines based on my migraine history. We started on norytriptiline which took care of the dizziness/stoned feeling. When that stopped working we switched to topiramate which I still take. She also found that I was B6 deficient and had me start supplementing it plus a double dose of B2. It was such a relieve to no longer have that dizzy/stoned feeling! I still haven't figured out how I can have acephalgic migraine that literally never stops! Ever without medication! Unfortunately the past 6 month my balance issues, just like you describe, are getting worse! I'm constantly keeling over, but manage not to fall. Thankfully I'm using a cane currently because of my hip. My neuro doesn's take that serious either. I mean how accurate is taking a few steps back and forth in the exam room when the problem is in a normal environment with people and moving things, light changes, normal walking, sudden turns? They always forget about that! Same thing with the eye doctor! I think some of the balance and movement issues I have is due to my eyes. I never see well, which is partially due to dry eyes, and mostly I just see blurry or double. Yet when I do my vision check ups there is not much change. Again, in a normal environment I'm dealing with moving things, different lighting, textures. My brain just can't handle it. So everything is normal. Yeah right!
Oh dear Tharrell. Sorry we share these horrid symptoms. Both neurologists dismissed the idea that mine was any type of megraine though because I don't get headaches very often - and never migraine ones. I do wonder if mine is ear related as I have two profoundly deaf sisters and small passages with nose bleeds in winter etc. But neuro dismissed this too as I have a very diffuse SFN which this wouldn't explain.
For Anita - I've just phoned the MRI/ X-ray department and was told that I will get dates soon and this will be done next month before we go back up north on 24th. Phew!
MAT,
Your account of the dizziness is clearly lack of proprioception. I have problems with this as well. Did he test you for this...by having you close your eyes as he moves your toe up/down...to see if you can tell which way he moved it? They also check at the ankles and knees to see how far up/severe the problem is. Of course they can check fingers, wrists, and arms as well. But the feet are more problematic as it affects your walking.
I HAVE TO look at my feet when I walk, or I will fall. It is my own way of compensating and retraining my brain to work around the problem. Have you tried this? If I lose sight of my feet I have problems...as for why you have problems when you look up. The same applies in dark areas (because you cannot maintain visual contact with the ground and your surroundings). There is no real 'treatment' for this other than retraining and compensation. But it is yet another sign of your neuro manifestations of Sjogren's.
Yes Anita this is what the latest neurologist told me but she said it wouldn't get worse or get better. She explained that I won't get the sensation back in my feet and I must adapt and learn to live with it. So I've really tried to - although I haven't been able to enrol in any yoga or tai chi classes as she suggested, because we have been moving about and life has been too unsettled.
But the thing is the disequilibrium is getting significantly worse now and I seem to have these fugue-like moments where I just feel paralysed by indecision about how to move forwards or regather my equilibrium enough to cross a road or walk up steps. So if it's caused by propriception problems as you say - then why does it seem to be getting worse? I'm told my SFN is not progressing and then rheumy said that Sjogren's neuropathy isn't usually progressive after a certain point, but surely this worsening disequilibrium indicates that mine is continuing to flourish? I wish it all made sense to me but it just doesn't!
I don't know if you have SFN but it doesn't sound like you have a proprioceptive disorder. I first started having these symptoms back in 1990. I would drive to work in the morning and when I got to work I would have to look at the ground to know where to put my feet. I also would have what I would call ataxia. At this time I had been having issues for almost 30 years and had just been diagnosed with hypothyroid. I did a lot of research on hypothyroid and I did see the words ataxia and proprioceptive disorder mentioned.
I mentioned this to several doctors and they paid no attention. The next thing I noticed that was proprioceptive in nature was really weird to me but did make sense when I thought about it. When I drove home from work at night and drove into the garage which had no automatic ceiling lights, I would reach to open the car door and I couldn't find the door handle. Now, we can't find our car handles the first weeks of adjusting to a new car, but once our brain is trained to our car and the location of the door handle it should be an automatic reflex.
But, it is not, unless you have light. Then the biggest thing I did that was funny I will have to admit, it walking down the hall in the dark to my bedroom. My hubby was sleeping and I could not tell where the heck I was. I felt dizzy and out of it and finally stopped walking and hollered and woke my hubby. "Turn on the lights, I don't know where I am". "What in the heck are you talking about?"
Hubby turned on the light and here I found myself in a bedroom with my nose about 1/8 inch from a door that was all the way open. Hubby couldn't believe that and neither could I. Then there is the walking day or night and always having to watch where the steps, curbs and my feet are or I could break an ankle.
I would pursue this with your doctor and also if you are having a hard time getting treatment you might want to get second opinion. The one thing you can do to help yourself is to keep your legs and arm muscles strong so that you are more sure footed and able to help yourself with both leg and arm strength. It is really a big help. You can get therabands at Walmart for exercise while sitting in a chair. Just some simple exercises a couple of times a day can even help with abdominal strength. Good luck. Irish
I do indeed have a very widespread SFN Irish - and the disequillibrium started a while after the SFN. When I visited NYC a few years ago it was really bad because of the jet lag. We went up the Rockerfeller at midnight and the blackness of the roof was like a vast black chasm. I gave up with img a minute and just sat down on the ground. A lovely attendant came and chatted to me and gave me his arm and took me round the edges showing me all the landmarks. He seemed to understand where my husband and son had been too wowed by the amazing view that they forgot to think how this vast blackness and lit up skyline might affect me!
So are your issues not proprioceptive then? I live in Scotland so we don't have Warlmart!
They are proprioceptive disorders and I have them all the time. Sometimes they are not too bad and other times they are worse. Fatigue really makes them worse and I do better when I am at home where my brain doesn't have to work so hard to interpret my surroundings. Being outside without walls or boundaries causes me to have more dizziness and balance issues plus trouble interpreting external stimulus such as curbs and other physical changes found outside.
Many people with autoimmune issues suffer from the proprioceptive disorders and we all have some of the same problems and then also have different issues too. Irish
You describe me to a tee Irish! I'm fine in familiar surroundings - even in the dark. I come a cropper when out in the big wide world -especially in artificial lighting, patterned flooring, curbs and steps and busy thoroughfares. And the top of the Rockerfeller of course. I wish doctors would explain that their AI patients often suffer this kind of disequilibrium because it would make me feel less fanciful somehow. Thank heavens for forums such as this. ::)
Proprioception issues most definitely can get worse, as nerve damage gets worse...not sure why she would say that. Some people have minimal problems, while others have significant issues and must look at their feet in order to walk (like me)...then there are others with really bad issues that cannot drive or walk because there is NO spacial awareness at all.
Did she do the proprioception test with toes, ankles and knees (while your eyes were closed)?
Here's a good wiki article on proprioception:
https://en.wikipedia.org/wiki/Proprioception
I don't know if I mentioned on this thread but keeping our strength in legs, arms, feet and abdomen go a long way in stabilizing us when we walk and move around with proprioceptive disorder. Using therabands and passive exercise are good when you can't do the active exercises. Irish
Also, I started having these proprioceptive issues in around 1990 and in 1999 I had an ear surgery on my deaf ear that involved drilling out the nerve where it enters the brain. This resulted in total deafness (I was hearing nothing useful anyway) and I lost 1/2 my balance. I had some vestibular rehab and that helped. I did amazingly well for someone in my age. Now I have the autoimmune balance issues, etc, the loss of 1/2 my balance and the benign vestibular balance issues from the calcium deposits in my good ear.
I can still drive without any problems for some reason. My neurologist explained to me why I can still manage to drive and I don't get it. However, when I get where I am going after driving a couple of hours I am just wiped out. I have to stop quite often during drives also. I am so wiped out because of the stress on my body from working so hard to maintain everything when driving. I finally figured out a way to explain this after 17 years. I feel like I have a carpenters level in my head and I am trying to keep the bubble right in the middle.
In terms of treatments for various systemic effects of Sjogren's, I found that Brazil did a literature study a couple of years ago, and put together a list of treatments that should be attempted for each. The link is http://www.sciencedirect.com/science/article/pii/S2255502115000759
I found it very interesting reading, particularly as they specifically recommended treatments for controlling SFN rather than the "ignore it and it will stabilise on its own" approach. I had been looking for information on what I could do to try to stop/slow down the progression of SFN for me, because it is on the edge of putting me in a wheelchair for travel outside the home (I am already on crutches). However, it has a fairly comprehensive set of treatment recommendations, so I would recommend reading it/taking it to an appointment with specialists that were ignoring symptoms that you felt should not be ignored.
Quote from: irish on August 27, 2016, 06:43:22 PM
I don't know if I mentioned on this thread but keeping our strength in legs, arms, feet and abdomen go a long way in stabilizing us when we walk and move around with proprioceptive disorder. Using therabands and passive exercise are good when you can't do the active exercises. Irish
Also, I started having these proprioceptive issues in around 1990 and in 1999 I had an ear surgery on my deaf ear that involved drilling out the nerve where it enters the brain. This resulted in total deafness (I was hearing nothing useful anyway and I lost 1/2 my balance. I had some vestibular rehab and that helped. I did amazingly well for someone in my age. Now I have the autoimmune balance issues, etc, the loss of 1/2 my balance and the benign vestibular balance issues from the calcium deposits in my good ear.
I can still drive without any problems for some reason. My neurologist explained to me why I can still manage to drive and I don't get it. However, when I get where I am going after driving a couple of hours I am just wiped out. I have to stop quite often during drives also. I am so wiped out because of the stress on my body from working so hard to maintain everything when driving. I finally figured out a way to explain this after 17 years. I feel like I have a carpenters level in my head and I am trying to keep the bubble right in the middle.
Quote from: irish on August 27, 2016, 06:43:22 PM
I don't know if I mentioned on this thread but keeping our strength in legs, arms, feet and abdomen go a long way in stabilizing us when we walk and move around with proprioceptive disorder. Using therabands and passive exercise are good when you can't do the active exercises. Irish
Also, I started having these proprioceptive issues in around 1990 and in 1999 I had an ear surgery on my deaf ear that involved drilling out the nerve where it enters the brain. This resulted in total deafness (I was hearing nothing useful anyway and I lost 1/2 my balance. I had some vestibular rehab and that helped. I did amazingly well for someone in my age. Now I have the autoimmune balance issues, etc, the loss of 1/2 my balance and the benign vestibular balance issues from the calcium deposits in my good ear.
I can still drive without any problems for some reason. My neurologist explained to me why I can still manage to drive and I don't get it. However, when I get where I am going after driving a couple of hours I am just wiped out. I have to stop quite often during drives also. I am so wiped out because of the stress on my body from working so hard to maintain everything when driving. I finally figured out a way to explain this after 17 years. I feel like I have a carpenters level in my head and I am trying to keep the bubble right in the middle.
Irish that's a brilliant description. It's exhausting for us keeping that builder's levelling device in place at all times - not crashing into things if we look up, not losing balance if we turn - nothing is taken for granted anymore. I might have to show my husband this thread so he understands better because his tendency is to point at things to show me or get annoyed when I'm always looking down and bump into people or fail to notice lights changing etc. I'm sleeping like a log just now - through the day and then at night too. It's just mental exhaustion I think!
No one can understand this unless they have gone through it. I would guess that it doesn't help much for anyone to try and help us. We have to learn to take it slow and look at the world in a different way. I always feel so congested in my head and when the congestion is really bad it seems like my balance issues are worse.
Weird thing that it is, we learn to get around as the years go by because we use our other senses. Visionis so important to me as I have only 50% hearing in one ear and totally deaf in the other. I always have to watch when I cross the street cause with deaf side I could get taken out by a bus. lol Irish
Quote from: irish on August 28, 2016, 06:31:55 PM
No one can understand this unless they have gone through it. I would guess that it doesn't help much for anyone to try and help us. We have to learn to take it slow and look at the world in a different way. I always feel so congested in my head and when the congestion is really bad it seems like my balance issues are worse.
Weird thing that it is, we learn to get around as the years go by because we use our other senses. Visionis so important to me as I have only 50% hearing in one ear and totally deaf in the other. I always have to watch when I cross the street cause with deaf side I could get taken out by a bus. lol Irish
Sorry Irish, I'm grateful to you for describing yours, but I disagree that I just have to accept and learn to live with feeling permanently out of kilter. Mine is slowly progressing from episodic to constant and I don't yet know the cause - apart from like Sjogrens - but not which aspect.
My feeling is that mine doesn't relate to my ears as much as it does to the slowly progressing SFN. If the SFN or possible Dysautonima or even PoTS relates to my version of Sjogrens then there is still a chance that treating this at source could help the rest. I'm not ready for resignation yet! But it's taken me a huge battle to get this far and I've now had people say here how much better they feel on medications such as IViG and Rituximab. So the fight for treatment is going to be my next one I think.
Doctors were telling me to accept the idiopathic nature of my small fibre neuropathy a few years ago but I didn't, so now I've landed officially with a diagnosis of Sjogrens and I hope and expect the relevant treatment for a neurological presentation of this to follow. I'm in warrior mode just now having been massively fobbed off over the years!
Quote from: Dawnmist on August 27, 2016, 07:07:17 PM
In terms of treatments for various systemic effects of Sjogren's, I found that Brazil did a literature study a couple of years ago, and put together a list of treatments that should be attempted for each. The link is http://www.sciencedirect.com/science/article/pii/S2255502115000759
I found it very interesting reading, particularly as they specifically recommended treatments for controlling SFN rather than the "ignore it and it will stabilise on its own" approach. I had been looking for information on what I could do to try to stop/slow down the progression of SFN for me, because it is on the edge of putting me in a wheelchair for travel outside the home (I am already on crutches). However, it has a fairly comprehensive set of treatment recommendations, so I would recommend reading it/taking it to an appointment with specialists that were ignoring symptoms that you felt should not be ignored.
Yes thank-you so much Dawnmist - I have now read it and will print it off and try to use it to help me fight my corner with the neurologist.
When I was in a different hospital last year, waiting to have my lumbar Puncture and other tests - there were three people having IViG for their various rare inflammatory neuropathies. When they described their symptoms I was struck by how minuscule these seemed compared to my far more diffuse problems. Their balance was largely unaffected and their neuropathic problems were contained to one body area or limb. They suffered fatigue sure - but not like mine. They hadn't had to cope with the many invasive tests I have suffered from either. So if they can meet the stringent funding criteria why should a Sjogrens person like me not be able to? If it is tried but doesn't work then that's another matter but surely worth a go rather than, as you say telling us to "ignore it and it will stabilise". Why would we do that if there are treatments that we know about that could stop us from having to use canes, crutches or a wheelchair?
I am 73 years old now and ha e been on the IVIG for 10 years. I am on a heavy dose of Octagam and have been on various other products during these 10 years. I would imagine that I would be much worse with the ataxia, proprioceptive disorder if I wasn't on the IVIG.
The IVIG is given for neurological autoimmune problems with good luck it seems. I would pursue a neurologist who would be willing to treat you this way. I started out at age 21 with health issues that came
and went and just continued to plague me. I finally decided that I had to have autoimmune because nothing else made sense. The docs just told me it was all in my head for years.
I was in mid to later 40's when I started having the proprioceptive disorders and what I considered to be some CNS issues. This was during the time my teeth were going to heck and long before I noticed any dry eyes. I had a slightly dry mouth since in my mid to late twenties plus the weakness that I now know was myasthenia and started at age 21 years after a head injury. (stress)
Moral of the story is that nothing goes by the book and chronic is the word for my autoimmune plus it has gotten worse as years have gone by. However, I have been on prednisone for 10 years alternating doses for my myasthenia and other part of the autoimmune issue and the IVIG is probably what has kept me in better shape than I would have been without it.
Years ago I had more trouble with my ambulation and bright lights, etc plus staggered like a drunk at times and was worse in many ways. I know that the IVIG helped plus when I was put on prednisone 10 mgm every other day for maintence of myasthenia gravis I noticed in a week or two that my balance and ataxia issues improved some. So, I hope that you can get started on some treatment to stabilize you. Good luck. Irish
Thanks Irish. I'm 20 years younger than you and if I can avoid some of the pitfalls you've had to endure then I'd really like to. Both my parents dropped dead at 73 but there's no guarantee I will too of course and of I don't I'd like to try and endure my quality of life is as good as it can be 20 years from now. Take care. Mat
Quote from: anita on August 27, 2016, 05:53:00 PM
Proprioception issues most definitely can get worse, as nerve damage gets worse...not sure why she would say that. Some people have minimal problems, while others have significant issues and must look at their feet in order to walk (like me)...then there are others with really bad issues that cannot drive or walk because there is NO spacial awareness at all.
Did she do the proprioception test with toes, ankles and knees (while your eyes were closed)?
Here's a good wiki article on proprioception:
https://en.wikipedia.org/wiki/Proprioception
My guess is that neuro said this to me because she had read the previous rheumy's letter saying that i had no connective tissue disease (negative autoantibodies while on steroids) and any possible previots RA was now inactive, therefore any SFN has to be mild and caused by previously active RA.
She did a Romberg test which I failed by falling to the left and she did various basic nerve tests and said I had some toe/heel clumsiness about which she was "not too concerned about". She asked my GP to test my fasting glucose levels (fine) and said she would check out my previous brain MRI of 18 months ago and see me again in six months (mid October). She suggested that it was my ongoing shared treatment plan with neurology and rheumatology that was her main concern. So far this has been a matter of pass the parcel back and forth so yes it's important for me too!
It doesn't sound like she tested your proprioception...it is a very specific test that you would likely remember. You lay flat on your back with eyes closed, while the doctor moves your big toe up or down...you have to tell him whether the movement was up or down. Not being able to sense this movement indicates problems with proprioception. If you cannot determine the direction of toe movement, then the doctor does the same with your ankle (moving it up/down, while you try to identify the direction of movement)...then the knee. Very easy test you can have your husband do.
But it clearly sounds like you have proprioception issues...the test just confirms it.
I agree with Irish about the IVIG. I believe it helps the proprioception issue...if not improving them, than at least keeping them from getting worse. I have been receiving IVIG since 1996...so 20 years (with a break for a few years after a severe reaction). I too think my proprioception issues would be worse if I hadn't been getting the IVIG...and I even think it has helped them slightly. I really hope they consider IVIG for you...there is many documents showing how it helps with SFN from Sjogren's.
But I also agree with you as not to give up and just accept this is what you have for the rest of your days...fight and get treatment and retrain your brain to compensate for this loss. The brain has the ability to compensate for loss of nerve function in many areas...you can learn how to manage this with practice finding what works for you...then you may get better with it over time.
Giving up is not an option, is it! Irish
Thanks Irish and Anita. Having come this far with your support and experiences of IViG, I won't give up. Because primary Sjogren's is relatively rare (affecting half a million in the UK out of a population of 65 million) this means that in Scotland it's not often seen and the bigger gun RA/Lupus/ Vasculitis treatments are felt to be largely unnecessary for the dry eyes, mouth and "mild" length dependent SFN of Sjogren's. He told me I'd tried them all the main DMARDs apart from Mycophenolate.
And I think IViG will be for the neurologist as an option so Rituximab would be offered before this as the rheumy kept mentioning it - for if I do have CNS or lymphatic involvement or my SJS is affecting other organs. The neurologist probably did check my toes with eyes closed and seated - but I can normally answer correctly to be honest. My toes and feet feel cold, pale and clammy with lots of powdery white skin I can draw on like a chalk board - and are affected by Raynaud's in winter. But if I think very hard I can usually pass the propriception test you describe. That's why she said my balance problems were more about my confidence than about SFN causing serious propriception issues. And this is why I have come to the idea of the disequilibrium being due to Dysautonomia because the SFN also affects my hands and wrists, mouth and face - giving me a sensation of being vaguely stoned all the time. Maybe mild propriception issues with Dysautonomia - which might also explain the strange type of constipation and extreme temperature responses to hot and cold foods and drinks, heart palpitations, swallowing issues.
Plus I think I'm always rather dehydrated even though I drink loads of water. I have wrinkly skin on fingers and all my markers suggest very thick blood. Maybe this could be affecting my balance too?
The only things the rheumatologist didn't refer to was my RA, apart from telling me that he felt my former diagnosis to be a very understandable mistake and explaining that connective tissue diseases do all tend to overlap a great deal. I did try to tell him that my hands and feet are increasing painful in a way that to me suggests RA. But he was too preoccupied by my swollen lymph gland, night sweats and disequilibrium and then ran out of time. Rituximab is licenced for use for RA in Scotland but not yet for Sjogren's. So it would have to be an off licence use. But I can't fold my knuckles anymore and writing this is hard so I think/ hope that's an RA card which I should keep in my poor old hands for now ::)
I hope that they consider IVIG. It is easier to tolerate, less side-effects, and most importantly...more effect for neuro involvement (lots of documentation).
The Cellcept (Mycophenolate) may be an option for you as well. It is also pretty easy to tolerate and quite effective for Sjogren's and even neuro involvement. I used it for a short time and had good results with the neuro pain/symptom. But I had to stop due to a bad infection (being immune deficient made matters worse for me).
If you search this forum for Cellcept, I think you'll find many here have used it.
You are still at the starting gate, so more tests have to be done and then to see more doctors. I'm just so happy you finally have a Dx and seem to have doctors that are taking interest in this and want to help you. I just hope they move this along quickly for you...as Sjogren's neuro damage can be permanent if not treated promptly.
Any word on the MRI scheduling ?
Hi Anita. I learned yesterday afternoon that my CT with contrast of thorax down to pelvis is to happen on Tuesday afternoon. They haven't yet given me a date for brain MRI but I'm assured it will be within the next week or two. I'm fretting about the possibility of Lymphoma more now I admit. I have had an unexplained mystery vaginal discharge now for many months. Briefly it turned to severe yeast infection but now that has gone but the non itchy odourless out pouring continues unabated. What with the equally mysterious constipation and the swollen lymph gland in groin I'm having a bit of s worry fest I admit! Will be glad when these latest investigations are over with and results are conveyed.
For what it's worth, I had labyrinthitis very badly last year, it went on for several weeks, and started with me walking along a road and feeling I had to stay near a wall or I might fall over. Crossing a road was awful as I felt there was nothing to give me my bearings. Anyway I got medication for the labyrinthitis but also I found some exercises online which I think really helped, the main one I did was standing in our kitchen and focusing on a point out in the hallway, then walking towards it twisting my head slowly from left to right and back again, always focusing on the same point. Then I'd do the same thing back to the kitchen, focusing on some point in there. The first time I did it (only a couple of times) I had to go and lie down afterwards! But I kept at it and gradually managed to do more little walks back and forwards, eventually I could do quite a lot and I could also move my head faster.
It doesn't feel nice the first few times you do it but I think it did help me. Maybe get someone to stand nearby to begin with if you're frightened of falling?
Thanks. I'm not denigrating the awfulness of Labyrinthitis, but my disequilbrium has been gradually worsening over a period of two years now. I was given exercises to do by my old physiotherapist that sound very much like the ones you describe. I did them for months to no avail. Maybe the neurologist will refer me for neuro physio when I see her in October. Various friends have suffered from Labythintis so I've had descriptions and I believe it's far more dramatic than mine - but usually short lived. Mine has only progressed to the point where I seem to lose my balance if I
move my head, just as the other neuro symptoms have changed or small fibre neuropathy has ceased to be painful and is now more tingly and crawling numbness everywhere. I should find out soon enough so will come back and tell you what turns up or doesn't. X