Promised Update - Possible lymphoma and CNS involvement

[irish]

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

[MAT51]

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. 

[anita]

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

[irish]

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.

[Dawnmist]

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.

[MAT51]

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.

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!

[irish]

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

[MAT51]

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!

[MAT51]

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?

[irish]

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

[MAT51]

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

[MAT51]

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!

[anita]

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. 

[irish]

Giving up is not an option, is it! Irish

[MAT51]

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