I've been having progressively deteriorating small fibre neuropathy, that has over the last 5 months finally started hitting the soles/heels of my feet. A month and a half ago, I hit the point where I needed walking aides to be able to travel to/from work and not trigger severe-migraine level pain that would continue for several hours. The diagnosis of Small Fibre Neuropathy was confirmed via the only test that the Australian Health department considered necessary to provide - the Qualitative Sensory Test. Objective (instead of Subjective) tests were viewed as too complex/requiring too much skill to prepare and analyse for a condition where (and I quote) "there are no studies demonstrating that there is any benefit to the patient to be able to confirm a diagnosis of Small Fibre Neuropathy".
So the outdated subjective sensory test where they check whether you can feel cold/vibration is all there is.
It has already damaged my hands badly enough that they are unusable at all without nerve pain medication. Even with pain medication I've had to make adjustments and find work-arounds for remaining issues that will trigger off severe pain, and there are activities I simply cannot do anymore (like use a computer mouse, hold things for more than a couple of minutes - e.g. when shopping, put pressure/weight through my palms, etc). Because of that, I cannot use a walking stick...and I cannot use most crutches. I also won't be able to use a manual wheelchair if the damage to my feet continues until I hit that point. I cannot put sustained pressure/weight through the palms of my hands.
I found a type of crutch that lets me use my elbows/forearms to transfer weight through, so from the beginning of August I've been using those to get to/from work. Even with those, I've already had one day where every time I had to stand to go to the ladies pain would shoot back up to 7/8 out of 10 (migraine levels). Seated it'd drop back to a slightly more manageable 5/6. I'm working with my Pain Management specialist as much as possible, and we've been testing another pain medication slowly titrating the dosage up...and that seems to have pulled me back from the "almost needing a wheelchair" point to just in pain point again.
In mid June, my Rheumatologist wanted to try to stabilise the nerve damage, and (due to funding issues with the health care system here) sent me to another Rheumatologist with one of the main teaching hospitals who also works with the hospital's Lupus clinic in the hope that I could get access to Rituxan.
While waiting for that appointment, I've still been plugging away with Plaquenil, Celebrex, and pain medications only. Pretty much Plaquenil is the only thing that is an attempt to modify the immune attack on the nerves. Nothing else has yet been tried...no methotrexate, no other immune suppressants like Cellcept or Imuran, not even prednisone. Just pain management.
I had that appointment yesterday. The verdict: because my ESR was not high (when it was tested 18 months ago), and there is no major organ damage, there is no Objective evidence that Sjogren's was doing anything at all to me. She then proceeded to scold me telling me that I couldn't keep simply adding more and more pain medication, and should look into non-medication ways to deal with pain. And that she doubted that Plaquenil could be doing anything at all to help me so I should stop it. She implied (though didn't actually say) that I was making the whole thing up to get access to pain meds.
I've spent 23 of the last 25 years dealing with pain and fatigue without medication, because it took 22.5 years before my GP thought that maybe he should check whether there was anything autoimmune happening. The fact that it took him so long to check also counted against me...if there was something really wrong I would have been diagnosed earlier.
I've just completed an online Chronic Pain Management course run by Maquarrie University here - and every skill/technique covered in the course was one I'd already been using for at least 20 years.
She's run another full set of blood tests, but basically told me that if they do not show a high ESR now I should stop all Sjogren's treatment as there is absolutely nothing to treat. She held the test result in her hands confirming the loss of cold/vibration sensation consistent with length-dependent small fibre nerve damage, commented on something else on the result sheet, then told me that since there was no objective evidence there was nothing there. Evidence I cannot supply her in Australia because there is no objective test available here to confirm small fibre nerve damage.
Dawnmist,
Wow! Talk about "Catch 22!" I think you are being treated so unfairly!! I've had doctors treat me badly but I had the option of ditching them and finding another.
I think it's ridiculous that they won't test you for small fiber neuropathy. Doesn't say much about your healthcare system! Do you have any means of getting another opinion? Never give up! Do you have a patient advocate? You need someone who can go to bat for you.
Even a family member. I'm sorry that you are being ignored and your pain is not being acknowledged as real. That really ticks me off. I wish I could go to the doctor with you!! Can you take a friend or family member with you the next doctor appointment?
Hang in there.
Kathy
My husband did go with me...and was just as disbelieving and dismayed by the appointment. His opinion was that she had made up her mind before even entering the room.
And it's not so much a problem of not allowing me to be tested, as simply not supporting/providing the only test that would have been able to give her objective proof (a skin punch biopsy, where they process the sample in a way that dyes the nerves and physically count the number of nerves left in a millimeter of skin) instead of subjective proof.
I'm so sorry to hear what you're going through.
I don't understand why the doctor is taking ESR as a relevant measure for Sjogren's. It's not part of the diagnostic criteria for Sjogren's. Many people with Sjogren's don't have an elevated ESR.
http://www.sjogrens.org/home/research-programs/healthcare-providers/diagnosis-criteria (http://www.sjogrens.org/home/research-programs/healthcare-providers/diagnosis-criteria)
BTW, these criteria are for diagnosing Sjogren's for people who may participate in medical studies. Many doctors use a lower standard in actual care.
I don't know your medical system, but to ask the obvious questions: can you see someone else, or appeal, or in some way get around this person who isn't being helpful?
I grumble and mutter under my breath at her on your behalf!
In the states we often use IVIG for nerve issues. Sometimes there are to be special circumstances letters (I don't know what the legal name would be) written by the doctors and submitted to the board that oversees the use of IVIG in this country. It would be nice if you could see an immunologist who might be able to be more proactive about your issues. I have never had an elevated sed rate in all the years I have been ill. Some of us never do. The doctors get too hung up on blood work sometimes. They should be treating the symptoms. Good luck and keep us updated on how you are doing. Irish
Thank you for your support.
I did at least ring my existing Rheumy's office when I got home from the appointment yesterday - he isn't there on Mondays, but I thought I could at least ask for an appointment with him again as soon as possible. The clinic reception asked what had happened, and I gave them a description of what my Rheumy had sent me there for, and what had actually happened. They then said that it sounded like something that needed to be passed on to him as soon as possible rather than having to wait for an appointment, so they would pass the word on and get him to give me a call today to discuss what I should do next.
I got a phone call back from the clinic reception today. He is exceedingly unhappy with what happened at the appointment, is going to talk to them in person and set the record straight the next time he is working from the same hospital (I know he is there on Fridays, but I don't know whether he is there on Wed too - he's at the clinic I've been seeing him on Tues/Thurs). Then he'll give me a call.
Warmwaters - she basically said that ESR was a measure of inflammation, and that without some externally visible objective measure of inflammatory activity from the Sjogren's, it wasn't active. I'm positive for all of ANA, SSA, SSB, and the second form of Ro, so she could not say there was no indication that I had Sjogren's. But her argument was that if there was no inflammation as measured by the Sed rate and no "major organ damage", there was clearly nothing needing immune suppression or modification type treatments and their risks. And proceeded to abuse me for being there in hope of one of the more expensive treatments, when there was clearly nothing needing treatment anyway.
Irish - IVIG is pretty much limited to life-saving treatments here. Myasthenia Gravis qualifies...Sjogren's doesn't (except in "extreme circumstances" - which seems to be things like when it causes heart/lung damage). Most neuropathies are actually explicitly listed as not qualifying/not recommended at all. From what I've read, we actually have to import some IVIG in order to meet the needs of those who are approved for it - so I can understand why it is limited to the people who can benefit the most from it, and can agree with that decision even though it leaves me out. As for blood work - definitely. My Rheumy decided that Plaquenil was appropriate to try when Celebrex had proven that the tendon pain and muscle fatigue I got were eliminated by anti-inflammatories and thus were not caused by fibromyalgia. If the "test of the pudding is in the eating", that pretty much proved that despite unremarkable inflammatory measures (CRP up a bit, SED not) a significant portion of my pain/fatigue was inflammatory by nature. So did the fact that I've had between 2-6 bouts of tendonitis or bursitis or plantar fasciitis per year since I was about 16 (unexplained - unless decided it was just posture/laziness/etc) - and every single time that my GP actually bothered to send me for an ultrasound to check on it, the inflammation was identified & verified by that ultrasound. I must admit that after 20 years of having "hot sparks" in my shoulderblade tendons non-stop, it is still a wonder to me for those sparks to be simply gone now.
All I can do is hope that he can sort things out...and that I don't now need to wait another 3 months for a replacement appointment. I'm struggling badly enough now, and the changes from the SFN have been rapid and relentless. I cannot help fearing that I'll hit the limit with what my Pain specialist can help with soon, and at the moment I'm on the cusp of not being able to get to work via public transport if I need to walk a little already.
And the only "treatment" that really works for SFN is "find the cause...and treat that". Is it mad, that I almost wish the SFN was caused by being a coeliac or a diabetic/pre-diabetic instead...because then I could have some capacity to treat the cause of the damage myself by diet alone, and not have to risk relying absolutely on the whims of "special"ists like her?
I always advise finding doctors at a major University Medical Center. Read their resumes. Where they went to medical school, did their residency, and fellowship is important. Their areas of interest are also important.
There are few really competent caring doctors skilled enough to deal with our Immune Disorders.
You are at your wit's end, Dawn.
For NONE of my myriad conditions has 'find the CAUSE, treat the CAUSE' worked. I have only been able to treat the symptoms. For me the cause is a completely disordered Immune System which has attacked me for 74 years. Now I am deteriorating due to that attack over so many years.
This is your path, and sometimes we rage against our path, but our rage only hurts ourselves.
We need Patience, Persistence, and Acceptance. And humor 8)
My amazing Immunologist says: We use the tests we have, not the tests we need.
The same thing applies to treatments and medications, Dawn.
You are bright, you are motivated, and are at your wit's end. I'm so sorry.
We are here for you.
Hugs, Elaine
We are all here for you and understand. My sed rate has always been elevated...and the doctors still don't believe half of what I tell them. It drives me nuts when others act like I am making things up.....seriously....who would want this for themselves. Hang in there, we care.
Just FYI, my ESR is usually normal range unless I have an infection, but I've still got Sjogren's and my rheumy still treats it. I've had nerve damage, so it's pretty clear that it's "active" even without an elevated ESR.
Glad you're making some progress on making the system work.
I've had one result a few years ago when I had a serious inflammatory attack on the area around the right Sacroilliac joints where I had an elevated ESR (mind you, that's also the only time I ever had a blood test while having an inflammatory issue), but otherwise it has been low/none. CRP has usually been a little elevated - but not high enough to indicate viral/bacterial infection.
My rheumy was also treating based on symptoms/experiential evidence. He had no problem using the results of the test that confirmed length dependent small fiber neuropathy, or the Neurologist's formal diagnosis of the same. That's why he'd sent me on to try to get Rituxan in the first place!
It was only if that test result, and Neurologist's diagnosis based on those test results, were excluded from my diagnostic picture that left things "without evidence" of anything much occurring. And the only reason she thought she could get away with it was because the test is a subjective one - they ask you "can you feel this...this...this...", with random order to the actual intensity of change. And the only reason I can see for excluding a subjective test is if you've pre-judged the patient as dishonest. And using her own words, she had "no objective evidence" that I'd lied at any time. The fact that it was the only test available was flat out ignored.
I'm aware that ESR is a measure of a side effect of inflammation, and not a direct measure in and of itself, which is part of why I was so shocked that the consulting Rheumy insisted that if it wasn't positive there was no inflammation and no disease activity. I'm also aware that not all types of inflammation will cause it to be elevated - the clinic where my Gynaecologist works at published a study earlier this year where they had discovered another indicator that gets elevated due to hormonally-created inflammation that doesn't register in the Sed rate, but was highly reactive and predictive of the levels of pain those hormonal changes were creating for the person affected.
I did ring and request the name of the person I saw, so that I can put in a formal complaint over her behaviour in the appointment. Other than that, I'm still waiting for word from my Rheumy about what the next step should be (I don't really expect to hear back until late Fri afternoon). I'm now more angry about what happened and less discouraged than I was since my Rheumy is going to try to sort it out, but waiting in limbo is hard.
I am so glad that you had your husband with you. The doctors sometimes back down when confronted about their professional behavior when they remember there was another person in the room. So good to take someone with you. Good luck to you with this. We sure support you and are anxious to hear that this goes well for you. Irish
Dawnmist, I can't believe what you've been through. Glad your Rheumy is going to try and sort things out for you.
As another Aussie, I'm wondering which hospital treated you so badly :(
Aussie mum: Monash Medical Centre, Outpatient Clinic, Clayton, Vic.
Turns out the person who did that is the head of the Lupus clinic there. So I suspect that I'm not going to get anywhere with that hospital even if my Rheumy does manage to sort things out.
I did speak with my Rheumy yesterday. He won't have a chance to talk with them until Monday, but he wanted to know what I felt had happened at the appointment. He was absolutely appalled at some of what she had said, and kept apologising to me for the treatment I'd received - and I kept trying to say that I knew that he had been trying to do his best for me and wasn't at all to blame for someone else's behaviour.
I also let him know that the Resident that I started the appointment with had sat quietly in the background and witnessed the appointment, and the name of that Resident. My rheumy is keen to talk with the Resident too - it gives him a chance to get a view from me, from her, and from an observer - which if the Resident actually does tell him what happened honestly (as I hope he will) will cut through the "her word against mine" type issue. He will then give me a call back to discuss what to do from there.
My husband wishes he'd thought to take an audio (or video) recording of the appointment for evidence.
I'm from Sydney Dawnmist, but I've heard of Monash. Isn't that one of your top hospitals??
Sadly, life experience has shown me that the arrogance of some doctors is often far greater than their ability.
I hope your Rheumy gets some answers or can refer you on to another Dr who can help you.
I love what you said Aussie mum about the doctors arrogance in relation to their ability. Irish
Quote from: aussie mum on September 17, 2016, 02:57:47 PM
I'm from Sydney Dawnmist, but I've heard of Monash. Isn't that one of your top hospitals??
Sadly, life experience has shown me that the arrogance of some doctors is often far greater than their ability.
I hope your Rheumy gets some answers or can refer you on to another Dr who can help you.
Yes, Monash is one of our major teaching hospitals. Hence why it has a specialist Lupus clinic, and why he had tried to refer me to there in the first place. There are a few other hospitals that might have the ability to do it - the Alfred is another major hospital here that I would expect could handle the same stuff.
Arrogance is definitely right with how she behaved during the appointment.
I am seriously considering asking my Rheumy to organize to get a skin punch biopsy kit from Therapath in the US - the difficulty being the refrigerated shipping back to Therapath so that the sample arrives within 5 days or less from when it was taken. No-one could then reject the test like she did - it's the only truly objective test available. >:(
My Rheumatologist contacted Dr. Julius Birnbaum by email to ask for advice on treatment options.
He responded that there really was no need to do the skin biopsy, as the symptoms & sensory testing plainly showed that I had SFN, so all I'd get by doing it would be pain at the biopsy sites.
He also recommended that I really should be getting IVIG, as it was the only thing that really showed consistent improvement with SFN.
So my Rheumatologist referred me back to the Neurologist that had confirmed the SFN diagnosis, and he confirmed what I thought I had understood about the state of IVIG use in Australia. There are only a very few neurological conditions that it is approved for, and SFN is not one of them.
So despite it really being one of a very few options for actually treating the SFN, it is completely unavailable.
Rituximab is also completely unavailable - that was blocked by the head of the Lupus clinic at Monash two months ago (which was when I started this thread).
I've deteriorated to the point that I need to use a wheelchair to get to work now. If I try to do it using my crutches, I'm in too much pain when I get there to be fit for work - and it can take 4-6 hours for that pain to start to settle down. A powered wheelchair at that - my hands won't tolerate pushing a manual chair.
So this weekend I'll be celebrating my 40th (a month early but it's impossible to get people together for a party in mid December) in a wheelchair - and it looks like I'll have potentially another 40 years (+/-10) in a wheelchair to look forward to.
I was walking 10,000+ steps a day at the beginning of June this year. It only took 4 months to progress from walking freely to needing a wheelchair. Pain management is scrambling to find something that will help get the pain under some control again, as it has broken through everything I was taking. And the medications that I knew had some chance to actually help treat the neuropathy instead of just masking the pain it causes have all been denied.
Dawn I am traveling a similar path, SjS supposedly under control, but increasing neuropathy on the whole left side of my body. The neuropathy diagnosis is official as of yesterday, but I won't know the type (and maybe potential cause) until I see my neurologist on Friday.
My progression has been fairly sudden as well, coming on over the past six months or so. I began having ocular migraines, myoclonus, and increasing nerve pain all at the same time. I would not be able to get through the day without Gabapentin (and I've developed a much higher tolerance for pain than I used to have).
I too have difficulty holding things, smashed a glass dish several weeks ago because I thought I had it in my hand when pulling it out of the cupboard, but apparently did not. I frequently drop things and my husband is certain it's due to lack of feeling in my hand.
FYI it is possible to have neuropathy apart from Sjogrens. When I told my rheumtologist about my test results he said let's see what type of neuropathy it is before determining a possible cause. I don't always agree with him, but have found he and the neurologist to be best at treating me to the degree that they are able (and that is limited).
I feel your pain, literally and otherwise, wishing you strength.
Quote from: SjoGirl on November 09, 2016, 04:50:56 PM
FYI it is possible to have neuropathy apart from Sjogrens. When I told my rheumtologist about my test results he said let's see what type of neuropathy it is before determining a possible cause. I don't always agree with him, but have found he and the neurologist to be best at treating me to the degree that they are able (and that is limited).
I feel your pain, literally and otherwise, wishing you strength.
Thank you, and wishing you the same.
In my case, it's one of the classical types of neuropathy that can be caused by Sjogren's, so there has been no doubt about its cause. They did double-check early on that there wasn't another condition causing it (diabetes, coeliac disease, etc), and all the alternatives (except genetic) were eliminated.
Knowing what's causing it is no help though, because an auto-immune related neuropathy means that there isn't really anything I can do to help control it. If I was diabetic, I could at least
try to halt its progress by being very strict about glucose control. If I was coeliac, I could again try halting it by being very strict about avoiding gluten. If I was an alcoholic, trying to give up alcohol would help (I don't drink anyway)...but what can I do to stop my immune system from eating my nerves - other than eat right, exercise, etc - all stuff that I was already doing and clearly hasn't helped all that much?
At this point, all I can do is accept that I will be disabled for the next few years at least, and likely for the rest of my life, despite the existence of medications that might have been able to prevent that. I know that there is some research happening now about nerve regrowth, nerve pain, etc - so maybe sometime in the future it will become possible to reverse some of it. If there isn't though, or if I continue to be denied - its "only pain" afterall (yes, that is a quote from one specialist) - I need to just accept it as what will be.
Heck and I thought my Scottish neuro and rheum were being harsh in their attitude to neurological manifestations of Sjogrens?! Mind you much the same applies here and I do usually have a very high ESR and raised CRP. But this will vary from person to person - so my low ESR might be your high one. For your interest it says on the Arthritis Research UK site that people with Sjogrens often have a very high ESR and CRP, but this is because they have Sjogrens - which can concentrate the blood and protein levels. This is different apparently to having high levels of inflammation, and therefore is not useful as a measure of disease activity with Sjogren's, as it is for RA and Lupus. So your ESR may be be high for you but regardless, it should and be used to determine whether your Sjogrens is active or not.
I had a second, very pedantic rheumatologist who told me in January of this year that, apart from with RA, seronegativity isn't recognised anywhere in Scotland. When I tried to query this he went and got me the sheets for diagnostic criteria for Lupus and for Sjogrens. I pointed out that I'd been tested by him last year when I was still on steroids, having spent 2 years on Methotrexate, Plaquenil and others. He said this would make no difference to my autoantibodies and then leant towards me and said emphatically "you do NOT have a connective tissue disease. You may or may not have had RA but it is now inactive anyway". He just shrugged about the widespread SFN and disequilibrium and said it was not his problem as not caused by a rheumatic disease in my case.
Six months on, in a new hospital and off steroids, I was found to have a +ANA plus raised IgG and IgA and the usual very high sed rate. On this basis the new rheum advised a lip biopsy which came back very definitively for Sjogrens. Both my neurologist and new rheumatologist say it fits entirely with Sjogrens.
The last rheumatologist, who told me I did not have a CTD at all, and wondered if my consistently high sed rate and SFN might be a form of cancer ("not my area of expertise though") - was supposedly an expert in Sjogrens!
It's good to know I have SS now but otherwise, without organ involvement, I am only going to be offered symptomatic treatments I can't tolerate. And this is despite a very high sed rate. So why is an immune mediated small fibre neuropathy not taken as seriously as other inflammatory responses, when I keep reading that once they are dead, nerves cannot be regenerated? And like you I notice that the emphasis in all related literature says how the main thing is to find the cause of the neuropathy and treat it at source. So for us the cause is known but is still left untreated? Very perplexing I agree. >:(
I'm so sorry you're are going through all this.
It makes me mad that Drs say you're making up things like pain.
I've been told it's all in my head in the past also which I strongly denied.
I sure hope you get real help, support, empathy quickly!
Lotus1
Pardon me if I mentioned this before but I am wondering if you ever got a different or new neuro consult after you got the report and info from Dr. Birnbaum. It might help. I do know what it is like to be told it is all in your head and it is not pleasant. My diagnosis was held up by a clinic witih some doctors that literally blackballed me.
I am in the USA and don't know how your system works there, but I hope that you don't give up. . Have you documented your daily activities and how you managed to do them. Also, the next time you go to the doctor can you find a friend who knows you well and has a big mouth.lol You need someone who will stand up to a doctor and tell him how you are suffering and that your condition is slowly progressing downward. These darn docs who think we do this running to doctors for fun and attention. It is terrible!!!!
In the USA we have patient advocates that are employed by the hospitals, some clinics and the county health system. We are able to go and speak freely to them about the health care we are receiving and how and where things are going wrong in our qwest for better health and diagnosis. I wish there was someone like that in your country.
Whatever you do please continue finding different doctors to see. I have had some doc visits years ago when I struggled so for diagnosis and the first word I would say to my new doctor was "help. I can remember sitting in the doctors office being examined and trying not to talk too much or say the wrong thing cause I didn't want to upset the doctor. We should not have to do that when we go to a doctor.l Good luck and know that I am thinking of you and praying for your well being. Good luck. Irish
My normal Rheumatologist did send me back to the Neuro to try to get IVIG, but it simply is barred for most people. Small Fibre Neuropathy is not on the permitted condition list, so there is no chance that it could be approved for that. Sjogren's is on there as "extreme circumstances only" - which from what I have been able to determine means when it's attacking major organs. "Simple" neuropathies that won't kill you - just make you wish you were dead sometimes - have no chance at all.
My normal Rheumatologist is 100% behind me. My Pain Specialist has actually referred me to a second Pain Specialist and together they're trying to find something that will work. My GP is 100% behind me too. My (occasional) Neurologist has confirmed (again) the diagnosis of Small Fibre Neuropathy. It's just the head of the Lupus clinic that has blackballed me - and since Rituximab is only "approved" for use with Rheumatoid Arthritis & Lupus (and various cancers), the only way I'd get access to it with Sjogren's is through that Lupus clinic.
I am not going to give up - but it's not going to be a fun problem to solve.
Thank you for your good wishes, I appreciate them.
Cheers,
Janeene
Sometimes a doctor can write in to the IVIG committee and make a request for infusions based on medical symptoms. I have forgotten if you are in the USA. This probably doesn't apply to other countries. Hope there is something they can come up with. If you have Sjogrens I would think they could apply for it under extenuating circumstances. Small fiber neuropathy is a problem with Sjogrens patients. Good luck. Irish
If you are in Australia as I think you mentioned previously, then it might be worth joining HealthUnlocked for the Australian Sjogrens Syndrome Association HU community and asking there if anyone has successfully appealed or managed to access these big gun treatments for their SS?
I know of two people in the U.K who have primary SS and are on Rituximab but don't yet have organ involvement. I know of one person from Scotland who was able to get IViG for SFN despite not having a formal diagnosis of Sjogrens. I think they were sent to London to have biopsy of their dorsal ganglion nerves though. It seems so unfair when I think of two people I sat with on a neuro ward last year having IViG for CIDP despite the fact that only very small areas of their bodies were affected and all they suffered from otherwise was chronic fatigue which the IViG really helped them with they explained.
Is IVIG administered for numerous conditions at various levels of advancement? Or is this a result of "a" test, then Rxed?
IVIG is administered for various conditions based on the "quality" of the existing evidence at the time of last study (2012) showing that the condition was actually helped by the use of IVIG and the lack of availability of alternative treatments that could be used instead (or the alternatives were contradicted) for that condition.
https://www.blood.gov.au/pubs/ivig/executive-summary.html
Sjogren's falls into the "extreme circumstances only" category, and Small Fibre Neuropathy isn't listed at all.