Happy New Year - flare of SFN and baffled by something muscular?
 

Hello - I haven't been here for a while as so much has been going on and I'm now a month into another immunesuppressant med for my Sjogrens - Mycophenolate Mofetil/ Cellcept. So far I've had no adverse side effects but not much improvement either. As anyone who knows me too fron the Sjogrens World forums will know - this is only for a trial period of five months. I can't tolerate the Gabapentin family and am told if this doesn't work I'll not be offered anything more unless my organs become involved. My neurologist is very against drugs for me full stop and they all defer to her so it's a miracle I've been able to capitalise on lack of multidisciplinary togetherness in order to get to try a last disease modifying drug.

In addition to the usual SFN everywhere (currently flaring post Christmas/ New Year period) and disequillibrium, I also suffer fro a very high pitched tinnitus and dismotility plus severe GERD and palpitations.

All this I deal with in an ad hoc way and sometimes things do really work. Zantac/ Ranitidine taken regularly in place of PPIs has given me great relief recently for example. Keeping busy, resting, drinking a lot of water and avoiding unhealthy food and all alcohol has helped - as does making myself walk the dogs daily and keeping eyes moist.

But the one thing that I cannot get a handle on is the crushing weakness in my limbs while resting. I end up lying awake feeling like a prisoner in chains. It seems to be the opposite of RLS where I feel unable to move about at all, can barely lift the duvet or move my pillows for weakness/ leaden-limbs. My wrists and ankles plus calves are particularly pathetic and this induces a kind of panic in me because I then feel trapped. Once I break the spell and make myself move it improves - but then the sense of turning to stone starts up again as soon as I'm still and it's worsening all the time. I get very little quality sleep now because of it.

I had nerve conduction studies with EMG recently but nothing showed up at all. In fact my nerve and muscle responses were very healthy indeed I was told. So what on earth is this weakness about can anyone explain? When I do wake there's a feeling of tingle and warm glow all around my upper body and my finger tips seem to give off electric shocks. My doctors are mystified and I'm exhausted by this longstanding and steadily worsening symptom. Anyone else have this or know what it might be?

I get this as well. The weight of my own body when I wake up causes so much pain from the pressure on my skin and deep through to my muscles and bones. I feel so weak and hurt so much like one would it they did 2 days of extreme fitness bootcamp, slept on a cold flat rock, and then caught the flu. The weakness is amazing. My arms and hands are so weak that I can't hold my cell phone above me to check emails. I try to shift into different positions but it's all awful so I wind up getting up to get through the horrible pain of moving to achieve the ability to function and get the little one ready for school. I have to be up and down constantly all day. Can't stand long, use my arms long, or be in any one position for more than 10-15 min. I feel that this is due to such poor oxygenation of the muscles and nerves. I also get the tingle and warmth in different areas of my body at times, more at night though. I get random shocks all over, but the ones in my hand happen almost anytime I try to hold my fingers straight.

Healthgirl have you got any confirmed diagnosis yet that you can attach your symptoms to? Have you had EMGs or anything at all to base this idea of lack of oxygenation around? It does seem to make sense but have any doctors confirmed this and explained what can cause this bizarre and extremely unpleasant set of symptoms?

Do you have any kind of sleep apnea? I was thinking that my breathing at night seems to dip low and perhaps I should speak to my gp about getting a referral to a sleep clinic for an assessment if lack of oxygen is doing this?

Ps I was just reading up and discovered a disease called Charcot-Marie-Tooth Disease - never heard of this before and it's inherited. My late parents both suffered from weakness and both died suddenly and prematurely so ill never know now if theirs might have been similar to mine. It does seem to describe these symptoms perfectly but I think it would show up in EMG by now as I've had this for six or seven years getting progressively worse. Still the idea begins it may be similar to ours?

I think with CMT, you develop very high arch and curled hammer toes as the disease progresses, but this would probably have been noticed already in our twenties. It is not autoimmune, it's genetic. I think this is why the neurologists do the heel walk test to try to rule this out.

I am actually going to post an update right after I answer. As far as oxygenation goes, I don't mean oxygen breathed in, I am meaning oxygen necessary for mitochondrial function and cell health.
I attribute the malfunctioning breathing to that cause in the first place, which I'm sure contributes to the overall problems, but think it wouldn't be the case with out the autonomic dysfunction in the first place.
I have some kind of bizarre thing thats been happening for 3 years now where as I'm dozing off I wake up with either a harsh myoclonic jerk in a limb or my whole body and other times its with heart racing. I don't think I have obstructive sleep apnea, but I do have a problem where I wake up with a quick gasp type of involuntary in breath and then I fall back asleep or it keeps me up. My doctor said its because of my nervous system and its like a "reboot". Any way these "happenings" used to be scary, and now they are just annoying.

I forgot the name for it, but the ENT said my nose is inflamed leaving me small areas to breath through and I do notice in the early 3 am morning hours it becomes very difficult to breath so I get a poor nights sleep due to having to remember to keep my mouth open to breath. I think you said you take an allergy med, so maybe you have this problem as well?

Oh yes - I've just got that far now with my research! My arches are high but not like that nor the clubbed hammer toes etc. My neuro tested heel toe abd said there was clumsiness but not concerningly so. Still maybe some of the neuro muscular mechanisms behind it are similar - only autoimmune? I'm just not scientific enough to be able to comprehend but have to instead rely on my Sherlock blood hound instincts when I focus in on symptoms!

Haha, I'm a detective too. Wish there were some smart docs who would be willing to put their brains together and crack the case. I'm so tired. Seems they are all interested but too busy to spend more time to do any research or discuss possibilities with colleagues like doctors used to do in the old days before it became a big business.

This is so similar to what I experience nightly that it's almost a joy to read your description - awful as it is that someone else is going through such similar stuff as me. I too have these sharp intakes that wake me, severe palpitations and presently, bad SFN pain throughout my peripheries. I don't get the lightening bolt pain anymore though at least - used to hate that. I do get muscle or nerve twitching spasms in random parts of my body that can go on for hours. The other night the sole of my right foot started to vibrate and there was same twitching under the skin. It often effects a buttock or an elbow or a muscle or nerve directly above my right eye in my forehead. It's not painful but it is very disconcerting and again, it affects my sleep.

My nose is often dry and inflamed too but I do breathe through it rather than through my mouth because I'm a serious bruxist who apparently grinds away her nights. I'm on my third bespoke mouthguard in two years now. Yes I sometimes take antihistame to help me sleep and breathe through nose better. But this worsens the sicca so I try to pace it carefully and only take one a few times a week.

The neuro thinks I have mild ganglionopathy relating to Sjogrens but she doesn't seem to think the awful leaden limb fatigue is related to this or the SFN. It was my first truly weird symptom, predating the RA type pain by a year or two so I've had this limb fatigue for about seven years now - getting slowly worse. I use pillows to prop up my arms and legs but it's like carrying too heavy a burden to lift?

It's got really bad lately and my neurologist says think my Sjogrens would not explain it. Maybe it's vaso spasms from secondary Raynauds, as a previous CTD professor explained it, but I get no visible colour changes if so.

So you think it's all part of autonomic neuropathy with you and your neurologist confirms this too? Mine says there are no tests she can do to confirm ganglionopathy or my SFN (she won't repeat the skin biopsies - which were negative a few years ago) but she's prepared to go by my description alone. She says there is no other way to monitor it than to be guided by me. She is very anti medications apart from Pregabalin - which I refuse to try.

I find this lack of evidence for presumed diagnosises troubling but that's where I am at as can't afford to seek private assessments.

In this respect I'm very thankful to live in Scotland where the healthcare may be very underesourced but it is free at the point of delivery and I don't have to pay a penny for mine, apart from through my taxes. And it isn't big business here - although there's an element of this with Big Pharma of course but it's highly regulated by the Scottish Medicines Consortium - which is internationally highly regarded. I'm still so tired though - even with a formal diagnosis I can trust. So you have all my sympathy and thanks for your input / shared research X

haha, I'm a grinder too. The antihistamines help my nostrils too, but also dry me out. The more I talk to you, the more I think the SS is probably part of my deal. I get the ridiculous twitches as well and have raynauds. Do you have orthostatic intolerance? My neurologists don't know what to really say about half of my symptoms besides that "it is all part of the neuropathy". They just add it to their notes to look like they are doing something when they dont really know what to do. I am also not on any daily meds. I did have to take 1/2 of a diazepam last night to help with my miserable muscle crap, and as much as I hate it... it saves me from horrific cycles of pain and autonomic problems that get out of control. It also helps with the burning pain. It turns out that it does something to mast cells.

I do the same with Zopiclone which I treat myself to once or twice a week. It just gives me some brief oblivion. But didn't know that Diazipan can do sometime to the mast cells. Maybe I should swap this for Zopiclone as this gives me a terrible taste next day. My late mum used to take Diazipan for sleep. It does get kind of desperate doesn't it but I try to muddle along. I don't have orthostatic intolerance I don't think - but I do have disequillibrium and lose my balance often. Also I have tinnitus which is relatively new and penetrates my head despite many other loud sounds. Hate it all but the weakness/ leaden limbs is definitely the scariest symptom I suffer and the only one I and my doctors seem unable to account for so far.

Hi Matt, like Health girl I have exactly the same as you describe. I have had awful tinnitus about the time of onset. I have abnormal heart rhythms and my stomach is getting it badly now. In addition to the heads to toe Sfn I have consistently told my neuro of this debilitating weakness when I'm sat down that is so intense it makes me feel like I'm trapped in my body and won't be able to move. Although walking about is hard work it kind of alleviates this. Lying down helps a bit. This problem has continued to worsen and frightens me immensely. It is intense and does feel like full body paralysis. I feel strong internal tremor like sensations when the weakness is at its worst. As you may have seen from my other posts, I also have noticed significant changes to my legs and hips and bum in the form of atrophy. Atrophy of what I don't know. All my tests are one back k clear, e.g, nerve conduction and MRI. I've seen the best Neuromuscular expert in the country, he heads up the Queens Square neurological centre in London. Even he has said that sometimes no explanation for these symptoms can be found. It's devastating.
The exact cause of my neurological problems are unknown. I have recently posted about CMT as I felt I had symptoms of type 2. But as I have full body autoimmune problems already I am thinking it surely has to be an autoimmune mechanism that is causing damage in the same way cmt can.
I had the schemer test yesterday and my eyes aren't dry enough. My rheumatologist is at least trying.

Mat, could you tell me if you are having treatment for the R.A? Is the cellcept supposed to be for all of it or just the sjogrens?
I ask as Cellcept has been mentioned for me but the neuro won't try it based on simply what I am reporting. The suggestion is I start entanercept (biologic) and for the A. S I have in the hope it manages what's attacking nerves. I'm holding off until I've made mind up about muscle biopsy. I'm too scared to have it which is why I keep going on about it in my posts! Your symptoms seem so very similar to mine bar the atrophy.

Hi Mat52, and Healthgirl, and JoannaP79,

You all sound like perfect examples of my Immunologist's saying, "We use the tests we have, not the tests we need."

Once we get to the advanced stages of Immune Disorders, each of us may exhibit different problems, and probably problems that have no diagnosis at this time.

I was tested for CMT last fall, which is a genetic condition causing neuropathy. I knew I didn't have it, but it was the only genetic condition I hadn't been tested for so the specialist was so hopeful.

Doctors want to find a diagnosis that we fit into. If we don't fit, it is very difficult, for all involved.

It takes a while to understand that NOT fitting into any existing diagnosis does NOT mean that we don't have serious, painful, disabling conditions. It just means that the diagnosis doesn't exist yet, nor does the test, and sadly probably not the treatment.

However, it is possible that treatments for related conditions can be helpful. Certainly anything that alleviates pain and discomfort should be used.

I am now experiencing almost constant seizures (mild mostly), and trembling, and shaking hands, which have no diagnosis at present. Earlier I had two EEGs and one overnight sleep study with an EEG, and nothing has shown up on them.

The Medication I'm taking for the seizures is Depakote, which hasn't helped at all at my current dosage of 1250 mg/day.

To top it off I have the first UTI in over 4 years, so I'm sick. "It's always something".

Do keep us posted on this forum. Isn't it wonderful that people with highly unusual conditions/problems/symptoms can meet and share here.

Hugs, ElaineD

Hi Elaine, sorry to catch up on your news through this thread - I spread myself about on various forums and only really commit fully to one - a Lupus forum which is ironic as I've never been diagnosed with Lupus!

To clarify - I do now have a solid diagnosis of Sjogrens based on being ANA positive, having high inflammatory markers, paired oligloclonal bands and also a very positive lip biopsy. I also have longstanding Hashimoto's. But the way my Sjogrens manifests has been primarily neurological with SFN and disequilibrium. The neurologist blames most of my symptoms on Sjogrens but doesn't seem to think that the weakness is part of this. I do because I think I have an immune mediated SFN. Whereas the the dryness is life long so I don't know whether it's Sjogrens or thyroid related but for me it's just part and parcel of life and doesn't cause much hooha for me in the classic Sjogrens way. The weakness does - it scares me and I find the twitches around my body and disequillbrium hard going too. In my case I don't think I have an immune deficiency like yours because my immune system is frantically overactive most of the time, even on immunesuppressants. Also my IgG, IgA and compliments are all raised rather than low.

Yes I love this forum too and never cease to marvel at how so many of us get through the day!

The Cellcept is for the RA type pain I have with my Sjogrens officially but I only got it because the rheumy registrar failed to read my neuro' letter telling him I shouldn't be taking these type of drugs! Then it was too late for him to completely backtrack as I'd started so he wrote that it was a four month trial as usually these neuro symptoms in seronegative Sjogrens would only be treated with the Gabapentin family - which I won't touch again! I have already had severe reactions to Methotrexate, Sulfasalazine,Hydroxichloraquine and Azathioprine so no more options will be offered after this he tells me. Unless I start getting organ involvement or Lymphoma in which case I will meet the NHS criteria for Rituximab. Hope this explains!

I didn't qualify in the Schirmers test either - nor on the salivary one. This was a year and half ago when I was still on steroids though.

I've been reliably told by optometrists that this Schirmers is now thought primitive and redundant by eye doctors because many with dry eyes will produce some tears just because of the sheer discomfort. Certainly my rheumy team and my neuro aren't interested in how dry my eyes are now that my ANA has swung positive, immunoglobulins raised, inflammatory markers high and very positive lip biopsy. They tell me that I have a systemic connective tissue disease that they believe is primary Sjogrens.

Sometimes my eyes are very dry and I only score very badly in the tear break up and Rose Bengal tests for eye dryness but they never ask for proof from opticians or send me to eye doctors - they are happy to be led by my account of state of eyes and lip biopsy result alone I think.

I would not let them rely on Schirmers alone to rule Sjogrens out now. I know some with SS have only mildly dry eyes but severe neuropathy that can present like MS. I'm in Scotland and this is the fourth but by far the best Scottish hospital I've attended. Hope this helps.

By the way has anyone told you that you probably have ME or Fibromyalgia yet I wonder? When I have asked about these symptoms on other forums I'm often told that this is what others get diagnosed with when describing the limb weakness? I wonder if this is doctors being lazy and refusing to acknowledge an immune mediated SFN even when it's staring them in the face?!

I was just told by a the new rheumatolgogist that I saw at Columnia in NYC that the shirmer test is outdated and the dye tests are the only way to see if there is damage caused by sjogrens type of eye dryness.

Thanks Mat. I have nothing else that points to Sjogrens which is why they won't go there. No positive Ana, no official dry eyes or mouth. My eyes are drier as the last schirmers two years ago caused significant watering whereas this time it didn't despite the discomfort. I'm thinking of finding someone privately and begging them to do it. It's hard finding anyone who will agree to it, and all the best consultants say they won't do it. I have so many tests I still need to tick off. You all know how it goes.

Fibromyalgia was the first name given by some random rheumatologist assessing me via work. This was when I first became affected and realised I couldn't keep up with my job. I get so annoyed by the fibro term as it really seems to be code for 'something causing pain or discomfort in your tissues somewhere somehow'. I read the online report stating that a large proportion of fibro patients actually had Sfn. ME has also come up. I have met other ME sufferers as part of a local group. When they describe their symptoms they sound like full blown autoimmune issues.

That's really interesting, thank you
I'm now going to Google the dye test. This has never been brought to my attention nor the perception of the schirmers test. Can someone explain why experts in their profession just don't know or tell you of these things. If this was my job I'd want to know everything. I don't get it. On a more forgiving note my rheumatologist did say she had never come across someone with sfn let alone with full body wide presentation like mine.

Ach it's so sad isn't it? One day I bet most will be found to have autoimmunity if doctors keep checking. But they so often don't once they have landed their "all of the mind" labels.

So here's what I think you should do if you are in the U.K - or maybe anyehere depending on whether Sjogrens is taken seriously: Avoid the Schirmers and ask an optometrist or eye doctor to test you just for tear break up or Rose Bengal. The Schirmers sucks - it's just no good.

Then, whatever the outcome, find out what your inflammation levels are doing - this is cheap and easy to do along with your full blood count. If there is anything that suggests that you have inflammation (in my case inflammatory bloods and spinal fluid - which the rheumatologist no.2 still managed to ignore!!) then find an oral consultant/ dentist who can perform a lip biopsy. This is the only way you will get a confirmed diagnosis of Sjogrens or exclude it finally.

But you need to have a good reason to go through all these invasive investigations for a diagnosis because even if Sjogrens is confirmed through lip biopsy, bloods and CSF - they may not offer you any treatment beyond antidepressants or anticonvulsants. I was lucky to be misdiagnosed with RA five years ago but I've had to fight hard every step of the way to get the right diagnosis and hopefully an effective treatment. Most people with Sjogrens aren't as "lucky" and can't or won't persevere as I have. Best of luck, Mat

Certainly, they gave you the Cellcept for more than just RA pain. It is an immunosuppressant that covers many symptoms in the autoimmune disease process...including neuropathy/SFN, Sjogren's symptom mgmt, and even goal of remission!! Here's a couple articles about the use of Cellcept.


Conquering Sjogren's | Cellcept

Mycophenolate sodium treatment in patients with primary Sjogren syndrome: a pilot trial

I have experienced the heavy limbs, as you describe (when resting), but I could move them when I tried (which I guess you can, as well). They assumed the cause was the neuropathy. However, it did finally go away, so I hope yours does as well. You'll learn that many symptoms you get with Sjogren's will wax/wane over time. Symptoms may last for days or weeks or months and then go away as fast as they come on. There is no rhyme or reason for symptoms of Sjogren's...it's as if the disease has a mind of its own!! I can only suggest that you continue to use your limbs as much as possible (simple exercises) to keep the muscles strong. You don't want to add muscle wasting to your list of problems from lack of use. So the more they feel weak, the more you should use them to keep them strong.

I don't think the Schirmer's test is 'primitive'...but Scotland's way of performing the test may be...LOL Most ophthalmologists here in the US use the numbing drops to not only keep patients more comfortable, but then they get a more accurate test, since the tears aren't being produced from irritation. Done properly the test can show whether or not the patient is producing enough tears...and it is still an important part of the diagnostic criteria for Sjogren's...both here and in the European community. I'm sure the Schirmer's 'sucked' the way you had it done, but doctors here also perform the rose bengal, slit lamp, and various other high tech microscopic testing. But these tests do NOT show tear production.

I was hoping your update would have said you are experiencing vast improvement in symptoms. Sorry to hear it is not the case. But you are still early in the trial, so don't give up hope just yet. It takes a while to wipe out the immune system, and then for the inflammation to respond to this dramatic change.

Thanks Enbloc. The links are really useful! And I think I am generally doing better just now although I had a flare up of SFN and the rest last weekend that's only just startling to settle again now. My guess is that it is actually starting to kick in and symptoms overall are suddenly all feeling an improvement from yesterday. It's just the wretched night weakness that has seemingly got a bit worse but maybe that's just after a five day flare up of SFN. They do seem to belong together and I appreciate your suggestion that Sjogrens is a very complex disease that brings on mysterious symptoms that come and go. This one is consistently there though so I guess it has more to do with fatigue and insomnia than the rest. I've almost accepted it as a kind of ME really. It would be great if the Cellcept addressed it but my expectations really aren't that high for this particular symptom as it's been with me for so long now and is definitely getting worse.

The Schirmers will have to be the one thing we disagree about I think. I believe the UK (and Scotland) might be ahead of the US on this. I say this because of what I read but also because a friend attends the internationally reknowned Moorfield Eye Hospital in London for her Sjogrens and they have never used the Schirmers and she said they feel it unnecessary to measure her tear production in this way.

In the U.K opticians are often highly sophisticated now and have access to the most cutting edge technology and techniques - and this is the case for the one I'm to see this month - who specialises in autoimmunity because his wife has MCTD. He told me on the phone that Schirmers is only conducted in certain rather antiquated hospital rheumatology departments now because they can't afford the most cutting edge equipment available and haven't moved with the times. He explained that the important measurement is the quality of tears and how well they pass over the surface of the eye. Also measuring how long between blinks we can go etc. In the early stages of SS many have rhinitis so tear production isn't the issue for these people - they can't stop and even with anaesthetic drops (which admittedly weren't used for me on the only occasion I was given the Schirmers!) it aggravates more than it solves. My instincts say he is right. Anyway once we are using drops and ointments/gels regularly - the results will be skewed and also many medications we take can influence tear production.

Plus, as you said yourself, symptoms of Sjogrens can wax and wane so the periods of sicca flare are measured more importantly by studying the impact of flares on the eye. Certainly mine improve for quite long periods for no rhyme or reason but are quite horrendous at other times - and this state can last for months with me similarly to the SFN.

Something wonderful I've noticed though - the foul taste which has dominated my life so much recently has gone away! I think probably this is because I've discovered that Ranitidine/ Zantac taken twice a day - works better for my GERD than PPIs such as Lansoperazole for me. But then again perhaps it is related to tear or saliva production and maybe Cellcept is helping with this where nothing else has? I guess the test will be if I stop taking Ranitidine for a while and also how my PV is when I get it checked in a few weeks time. Reluctant to push my luck on this one though and I fear oesophagal damage a lot.

Oh yes and while I am on the subject of inflammatory markers - the PV seems to be a blood test that is more sophisticated and is slowly replacing the older Sed Rate/ESR, which people from far flung places often speak about?! (just teasing!). PV is thought to be more reliable because it doesn't change according to age, gender or body weight as ESR does. Any thoughts?

I thought you might be interested, as a PsA sufferer yourself with a very high sed rate, to know that a former doctor friend of mine with PsA told me that PsA is the disease that causes a very high sed rate/ PV rather than the Sjogrens lack of moisture, as I've previously been told by my rheum.

This distinction is important to me because the young rheum registrar told me that they won't be able to monitor the effectiveness of the Cellcept by looking at my blood test results because Sjogrens bloods don't reflect active disease. But I'm convinced that mine do fluctuate according to disease activity/ SFN and should be part of my clinical monitoring.

I think, from reading posts here and on the Sjogrens World forums and several SS Facebook groups, the international medical world is being very slow to acknowledge Sjogrens SFN and ganglionopathy/ dysautonomia as an immune mediated/ inflammatory neuropathy. To its credit at least my new hospital haven't relied on saliva production tests or Schirmers or nerve conduction studies or even my formerly negative skin biopsy result, to diagnose Sjogrens and allow me this trial of Cellcept. The vast majority of Sjogrens sufferers everywhere don't get offered disease modifying treatment apart from Plaquenil - and this is defintely not just UK sufferers - it applies to the majority of Sjogrens people the world over. I count myself as lucky to get this opportunity where others are not investigated for Sjogrens unless their autoantibodies represent them or they have a positive Schirmers. For this more enlightened view I thank my lucky stars!

You are very lucky based upon what you've reported about your experience...that has taken a long time to get to where you're at. I only hope you get to continue your treatment or try something else if this doesn't produce the results they are looking for.

I have been on the Sjogren's World forum and here for years and most with just Sjogren's symptoms of sicca and some mild organ involvement get Plaquenil, but anyone with neuropathy or major organ involvement gets Cellcept, MTX, or some other immune suppressant or IVIG...without having to fight for it. But the 'vast majority' of Sjogren's sufferers don't have major organ involvement or neuropathy....so you're right. Those only get Plaquenil because that is all they need. You are one of the few I know that has to fight to get treatment when there is clear neuro involvement. Plaquenil does NOTHING for neuro involvement, and doctors know this, so must treat with immune suppressants or IVIG.

The ESR test isn't used as often any more. CRP is the gold standard for inflammation markers. However, my rheumy knows that PsA and Sjogren's shows more often in ESR vs CRP, so runs both. When I have a major flare of PsA (and a joint is in full flare/swelling) the ESR is off the chart, yet CRP not so much. So it's obvious that the ESR does reflect inflammation in certain conditions more so than others. The PV isn't used as often here either...unless we run it under another name.

So how does the UK measure tear production? The Rose Bengal, slit lamp, etc do not determine tear production. I have heard of people having the Schirmer's like you had it done...it was not done properly. Frankly, I don't know if the ophthalmologists would use the Schirmer's if they had their way...but Rheumatologists still have it as part of diagnostic criteria across the globe for Sjogren's. Maybe this needs to change. The gold standard for Sjogren's is NOT the Schirmer's (this is just a tool to gauge tear production) or even the blood markers. The gold standard is the lip biopsy.

Everyone is different and many patients have blood tests that follow their symptoms/flares. Just like you ,I am the same way and my blood tests will reflect flares/inflammation. Maybe they will make it part of your monitoring.

Thanks Enbloc. Up here in my northerly world they still use ESR in the doctors surgeries and the hospital mainly relies on CRP. Like yours my ESR can go fairly high - but high for me would be about 62- 80 as has also got down as far as 17 when I take steroids or DMARDs. It was 54 last week and this is medium high for me. I look at these results and try to figure out what might be causung the rise from 32 the previous week. So I'm assuming that the flare of SFN was responsible but also wonder about there being an inflammatory component to my lower GI problems - and the fact that the GTT was also up at 64 in my liver function tests. So I know my normal range and use the patterns to confirm what I'm feeling up here in the north. My CRP is always slightly raised usually sits between 5 and 13 (normal range 0-5) and when I have something like a yeast infection or joint pain it goes up to 13-30. The Pancreatitis and sepsis made it soar up to 160 on five occasions. I think it's a good test for infections but like you it doesn't reflect the SFN flares in the way that the ESR always does

When I'm back near my new hospital they don't monitor me in the same way. The labs don't run the ESR/ send rate - they run a test called the Plasma Viscosity (PV). This is the more sophisticated version of the ESR. It requires better equipment and is sensitive enough to not be altered by factors of gender, age and body weight. They will only run this in the two areas of Scotland I've lived in but as it's more expensive they don't do it as often. It has replaced ESR in many parts of the south of England and London too because of its greater reliability. But like you I know my normal ESR levels so I like it. Some people with inflammatory diseases will feel they are soaring at 30 and they are if there normal is 0-5. So it's like a personal thing that we can use to measure against our pain and inflammation levels. Now I'm being told that it's irrelevant as all it shows is that I have Sjogrens which causes these tests to yield high results got plother reasons ie because of lack of moisture in our blood. I managed to argue that this was nonsense with me because mine fluctuates greatly with pain and comes right down when my disease(s) are better controlled. He looked at the screen and had to admit that I was right so tild hi that I will expect the Cellcept to get my PV and CRP right down if it's effective.

Re the attitude amongst medical community towards Sjogrens in the UK - it's so disappointing and depresssing. So many people aren't allowed to go beyond Plaquenil if they don't have other CTDs or established organ involvement. To me this is waiting too late. But in my own new hospital I'm proving the exception to their previous rule and I'm hoping that if Cellcept works for me then others with primary Sjogrens will also be allowed to try it. Fingers crossed. For me just tolerating it so well is a major breakthrough but I've had 13 months off steroids and 20 months since trying imuran so I'm guessing that it might take a bit longer than it would take for some because of my backlog of symptoms. The tiny nerves that are dead can't be bought to life now and they are many - especially in feet, hands and face - so the likelihood is that I'm stuck with the disequillbrium now. If only they had listened to me sooner - but then moving around hasn't helped.

Oh well it's my birthday today and I'm feeling positive! X

HAPPY BIRTHDAY!!

I agree that so many would benefit if they got more aggressive treatment early into the disease process...vs waiting until the poop hits the fan. That being said, MANY with Sjogren's never develop organ involvement or neuro manifestation...so you don't want to over-treat symptoms that haven't developed yet, either. Hard to call sometimes. But I say if there is any sign of neuro manifestation, this warrants immune suppression or IVIG (if SFN is confirmed). Organ involvement should always get immune suppression right away. So I'm fine with most getting Plaquenil, but ANY sign of this going outside the box of standard Sjogren's...it should be aggressive treatment during that oh so, critical window before damage becomes permanent. And for the most part on Sjogren's World, and local support groups that I have attended...they get this treatment when it's crossed over into organ or neuro issues.

I hope you don't think those nerves are dead, just yet. They haven't even confirmed the SFN...but it certainly seems that you have it. But even though, there is proof that IVIG can increase the fiber density and improve the condition/morphology of said fibers. But your 'window' is fading and they are not giving you the opportunity for that improvement...sad!! That being said, my 'window' closed many years ago...like 20 years!! But I can report improvement in both Poly & SFN pain and even 'some' autonomic dysfunction. Not much autonomic, but still noticeable!! IVIG is the ONLY explanation, as it didn't happen until after I started the higher doses for neuropathy related Sjogren's treatment. It's hard for me to experience something good and know that others (like you) can't have the same expectations...only due to where you live and lack of doctor knowledge and willingness to try. We live in a world where knowledge should be easy to obtain ANYWHERE. There is no excuse for why your doctors can't have access to the same knowledge as our doctors (and vise versa)...not in 2017!! If it was 1960 and there wasn't computer access, etc, I would understand....but not now.

Hope you had a great day on your birthday!!

Let me just add:

I was so happy when you were approved for your trial of Cellcept. I still have hope that you will experience greater improvement with it...as you are still early in the trial and it takes time for the immune system to respond to this type of change and for the inflammation to follow suit.

But I also know we have had many discussions about IVIG...and this is where my hope for you grows deep and where my passion about lack of information (doctors across the globe) fires me up. I know what IVIG has done for me and I know what IVIG has done for many (that I have spoken to) with autoimmune based neuropathy/SFN...and I want that opportunity for you. It may not help, but you should at least be given the opportunity...and it doesn't sound like you will. Hearing you say that your nerves are dead and that you will just have to live with some aspects of the neuropathy isn't fair, and isn't right...not when there is appropriate treatment out there that is widely being used (with success).

I hopes this helps clarify where I was coming from with my last post. You have fought so hard just to get where you are at. I only wish you could fight the system in getting you the BEST treatment out there for neuro/SFN manifestations of Sjogren's...something that can actually improve the condition and density of nerve fibers.

You have MORE knowledge than most of your doctors...just from research. Why can't they do the same??

[QUOTE=en bloc;1233178]Let me just add:

I was so happy when you were approved for your trial of Cellcept. I still have hope that you will experience greater improvement with it...as you are still early in the trial and it takes time for the immune system to respond to this type of change and for the inflammation to follow suit.

But I also know we have had many discussions about IVIG...and this is where my hope for you grows deep and where my passion about lack of information (doctors across the globe) fires me up. I know what IVIG has done for me and I know what IVIG has done for many (that I have spoken to) with autoimmune based neuropathy/SFN...and I want that opportunity for you. It may not help, but you should at least be given the opportunity...and it doesn't sound like you will. Hearing you say that your nerves are dead and that you will just have to live with some aspects of the neuropathy isn't fair, and isn't right...not when there is appropriate treatment out there that is widely being used (with success).

I hopes this helps clarify where I was coming from with my last post. You have fought so hard just to get where you are at. I only wish you could fight the system in getting you the BEST treatment out there for neuro/SFN manifestations of Sjogren's...something that can actually improve the condition and density of nerve fibers.

You have MORE knowledge than most of your doctors...just from research. Why can't they do the same??[/QUOTE

Hi Matt, thank you for info ref eye test and lip biopsy. I'm going to look into optometrists and see if any may be able to do this privately. I didn't think a dentist would do this here in the UK. I will investigate. I'd be worried they wouldn't know what to do with the sample/where it would be analysed.
My ear is usually normal, only slightly raised crp even when the immune activity is rampant.
En Bloc, I believe it is to a great extent down to funding that access to treatment options are limited here. The NHS is increasingly underfunded.

[QUOTE=JoannaP79;1233396]Hi en bloc/MAT,

I'm looking at private ophthalmologists near me. They charge a lot and I will have to pay myself. I am down the go's virtually every week so think I will have to chase this on my own.
To save paying a fortune for a consultation and then having to come back k again for a test could you let me know exactly what the terminology is. Am I right in thinking it's a Rose Bengal Eye Test to determine dryness of the eyes? I won't get to speak to them before I book the appointment so want the secretary to convey this so I can have it all done in the one extortionately priced appointment.

Am I right in thinking dry eyes could be caused by loads of things? And this test just shows dryness as opposed to anything more complex such as mechanisms causing dryness?

[QUOTE=JoannaP79;1235160]I'm really baffled Joanna. Of course you don't need to do this privately? Any high street Boots or reputable optician can run the slit tear break up test or Rose Bengal. I've never even seen an opthamologist - only opticians. In the U.K opticians are mostly qualified to test for sicca and you see them on the NHS and then they can refer you to opthamology if need be. It never has been for me yet though. Try SpecSavers or Boots. Then you could ask your dentist for a referral to get a lip biopsy - also should be possible on the NHS. Just be cunning, calm and convincing with all the healthcare people you come across. That's all I can advise. If tests are positive then spend your money seeing Dr Elizabeth Price in Swindon privately. If the optician thinks you may have Sjogrens. Mine did but dentist didn't. Neuro symptoms can start long before dry eyes or mouth and most people in this boat are seronegative. Good luck. Mat x

[QUOTE=MAT52;1235167]Ah thankyou Mat! I didn't realise I could go to the opticians for this. If I get dry eyes confirmed then that's one step closer to the lip biopsy. I fear without something a dentist won't even touch it. I do have confirmed inflammation via bloods, only very minimal, but they will just say it's the A. S.
Thank you again xx

Thanks I do totally understand where you are coming from. However I'm a realist and can only do what I can do. Cellcept will have to do for now.

I've been flaring away with that lousy deep throbbing pain and weakness/ fatigue in legs and arms for 3 consecutive nights now - okay during the day times although lots of Raynauds attacks. I try not to panic as I lie there but it's hard as the pain is so overwhelming in the early hours and severe sleep deprivation gets to me during the day.

I suppose, with my shiny smooth soles and Raynaud attacks in feet, I am wondering more about things vascular than SFN. It's not the burning pain now and feet are just cold, smooth and numb-ish. The pain seems to thunder through my calves and shins, hands, wrists and elbows. Hope it's just chronic pain/ Fibro but my imagination takes hold in the early hours. Tonight I'm treating myself to my weekly Zopiclone sleeping pill!

Touched by your birthday wishes - many thanks I did have a really nice day. Cellcept going okay - CRP down from 18 to 14,to 9.9 on Friday just past so the pain maybe isn't inflammatory. I wish I knew if MMF/ Cellcept was working but guess it's still early days relatively. X