I thought I'd update with this link and a question about seronegative SjS. I've been told by my new rheumatologist that I don't have a connective tissue disease because of my negative autoabtibodies. For a year my rheumatoid factor was a low positive and this coincided with full on RA symptoms five years ago. But the RA was non erosive - might have been chased off by Methotrexate and Hydroxichloraquine which I took for two years. Finally I became allergic to both. Now taking nothing and RA has never come back.
But the clinically diagnosed small fibre neuropathy has progressed to include both arms and legs and my face. I'm told I have Raynaud's, am hypothyroid (supposedly well controlled although I'm not sure I agree) and my blood pressure has gone steadily up so I'm now being treated for hypertension.
My eyes are very dry, my scalp itches and crawls and my feet and ankles are increasingly numb, as are my gums and lips and nostrils.
My mouth isn't particularly dry but this seems to be the only moist part now. I realise this is unusual and is why Sjogrens isn't being suggested for me. I'm not in much pain usually these days but find the numbness is now giving me disorientation problems and I'm using a cane because I often feel the ground is like quick sand if this makes any sense? My nose crusts and bleeds often with dryness. I no longer sweat at all and have lost my sense of taste and smell to an extent - apart from a bad taste often. All these symptoms, particularly the dizziness,improved dramatically while I was on steroids and I'm now suffering from reflux and constipation despite very wholesome diet and drinking masses.
So I've self diagnosed with seronegative Sjogrens because I read this article and it struck the strongest chord with me: http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/
I had a lumbar puncture last year and the only thing that showed up were these paired Oligloclonal bands. This would tarry with my fluctuating inflammation levels and high total protein levels. The thing that flags up for almost all my symptoms is Sjogrens but my rheumatologist seems unprepared to acknowledge this without a positive Ro and La. Should I ask for a lip biopsy or change rheumatologists?
I also have microscopic haematuria.
I don't want any further immune suppression if it won't help because I've tried four so far and had horrible allergic reactions to them. Nor do I want to go back on steroids after six months of these. But I don't want to keep losing sensation and end up with increasing spatial problems. I will see a new neurologist sometime over the next few months and need to know what tests to ask for and how to slow down the progress of this small fibre neuropathy so I don't end up losing sensation completely and completely losing my sense of balance just because of my negative autoabtibodies.
It is VERY possible for you to have sero-negative Sjogren's with your symptoms (even though you don't have dry mouth). The paired Oligloclonal bands are associated with autoimmune disease, so that even more points in the direction of connective tissue disease (like MS, Sjogren's, SLE, etc)...regardless of what your doctor says (IMO). I would suggest you see an immunologist...as they would be best at determining the significance of the paired bands.
That being said, you may be disappointed in what you learn because ALL the possible connective tissue diseases would address the problem in the same sort of way...immunosuppressants, steroids, Plaquenil or other DMARDs, or possibly Rituxan...none of which you wish to take or can't take. That only leaves you with alternative and/or natural treatments...which you won't get from a regular doctor.
Personally, I would go the immunologist first and then request a lip biopsy (which the immunologist may order), just to rule out or confirm the Sjogrens. The paired bands is the one key piece of this puzzle that has been positively identified and must be explored. I think it will lead you to your answers...but then you will still have to address the treatment side, which will include the above mentioned options that you don't want to take.
BTW, Julius Birnbaum (who wrote the article in the link) has stated in other articles that up to 40% of patients with Sjogren's are sero-negative. You might try googling his name for other articles to find this statement to show your rheumy. Maybe he will believe a doctor at Johns Hopkins that patients don't need a positive Ro & La to have Sjogren's.
Thanks very much for your considered reply Anita. Firstly to explain; it's not that I don't want to try any more medications - it's that the ones I've tried have either given me severe GI problems or Pancreatitis (Imuran) or Anaphylaxis. So I can't try them again. I haven't qualified for Rituxan because my RA symptoms have upped and gone. If the synovitis returns then I would be offered biologics under NHS guidelines - but only ones for RA not for neuro presentation of Sjogrens. I asked my last neurologist about IViG but he said this is only available for people with inflammatory neuropathies affecting the CNS - not "a patient such as you". This was despite my paired 'o' bands and highly fluctuating CRP and ESR.
Re the immunologist - I haven't got the option on seeing one unless I do so privately - which won't be easy where I live. However in another work related context I did come across a senior professor of immunology so I could possibly ask her to recommend someone as she lived here until recently. I do feel the need for answers is overwhelming and also I want to know what my status is in autoimmune terms so that I can manage it myself better if it worsens.
I did see a maxillofacial consultant recently and he said very much they same as yourself but felt a neurologist was key. He never mentioned Sjogrens or examined my face/ mouth because he said he'd read my last neurologist's report re paired 'O' bands and high CRP/ PV and explained that I have a clinically diagnosed small fibre neuropathy which is affecting my face now. He said the fact that steroids helped my dizziness/ disorientation showed that something autoimmune is responsible. So I then cheered up but since then all I'm offered are drugs such as Pregabalin and Norotriptyline - which my rheumatologist says in all they can offer me. I refuse these because coming off Cymbalta triggered a whole host of infections last year including pneumonia and sepsis. I've tried Gaberpebtin and Amitriptyline - not good. And anyhow I am not presently in much pain - just dizzy and full of weird heat and chills and numbness - so these drugs wouldn't help me at all.
Sorry to rant here - but I'm so frustrated with it all. Thanks I will definitely look up Julias Birnbaum's other articles. However in the UK rheumatologists take their criteria from EULAR - which is somewhat different on certain diagnostic specifics to the ACR. But I'm going to keep trying and will print off the relevant articles as you suggest. Mat
Your infection issues (whether directly or indirectly from the Cymbalta) is yet another reason to seek out an immunologist. Highly unusual for an antidepressant (SSRI) to cause an infection, but if your immune system isn't functioning properly then an immunologist is the doctor to see.
I understand that some of the medications you can no longer take, but the steroids helped (particularly with your current symptoms) you without incident. I am NOT for long term use of steroids, but use during flares, etc is typical practice for autoimmune conditions.
It would be great if this person could suggest an immunologist that you might be able to see. If they can find or confirm something definitive, then wouldn't you be eligible (afterward) for more care with immunology through NHS? Not only would the immunologist be appropriate for looking into the paired bands AND the autoimmune side of the problem, but might be able to shed light on the unusual infections from Cymbalta (which might open doors for other medications that will be helpful for you).
Rituxan is slowly being approved as an appropriate treatment for certain autoimmune conditions, so if they find something specific in you, then maybe you would be eligible...even through NHS. I just feel (as you do) that further investigation is warranted to find out what the heck is going on. Even the best treatments out there need to be implemented ASAP for best results. I'd hate them to sit back and watch you get worse without looking more into this.
Thanks so much for your support and advice Anita. I am composing a letter to my current rheumatologist explaining that it's more practical for me to move to the larger hospital in a neighbouring health area. I've decided to try to get someone else to review all my symptoms and test results and hopefully be less dogmatic and antibody focussed. I will be registering with a new GP soon too so I will speak to them about seeing an immunologist about my paired o bands.
I admit I'm slightly giving up hope because I live in a relatively small country and once a rheum has made a decision it's hard for their colleagues to contradict this. I'm hoping that by moving everything to a new, much larger teaching hospital with an international reputation - they may see a bigger picture through team work across the specialisms. Maybe the neurologist will refer me to an immunologist in this hospital? I do hope so.
I'm not really sick presently but I'm just so tired all the time. Just navigating on foot without tripping up, eating food that I can't taste properly, half smelling, not sweating, dry eyes and nasal passages, cold aching legs and semi numb, cold feet, gums, lips and ever itching crawling scalp. It is all just not so great. ::) :(
I think your plan is an excellent one. I fresh new set of eyes/opinions from multiple doctors is the right way to go.
Thanks so much Anita. You've been so helpful - i really appreciate it. Mat x
Hi mat
I'm reading your post and fill like its my words, I'm also a male 34 yo, 2 years ago all those symptoms came and the main issue for me is the neuropathy thing: itching, small numbness on right feet for the Last week, dizziness.....
The thing is I went to 3 different reum and made 4 Emg/cnt tests and after the Drs see me and see the good Emg results they sending me home ...
The dryness is not so bad until now but the neuro thing is extremely hard...
Are your Emg results also good?
Can you suggest another test?
Thx
Hi - I'm actually a woman of 53 - sorry if my name gives you a different impression!
Do you have the paired Oligloclonal bands too and are your CRP, PV/ ESR and other inflammatory markers always raised and often high? If so I would ask why bother with an EMG - not sure why they would use this rather than looking into autoimmunity or even, dare I say it, malignancy? Mine have gone up quite high again and I'm having a colonoscopy on Thursday and also a lip biopsy for Sjogrens.
I'm quite worried about Multiple Myeloma but my Bence Jones has just shown negative again. If you have lots of inflammation then I would push for answers. If you have symptoms but no other signs in your blood or spinal fluid then I'm not sure what to suggest. If you haven't had blood tests for inflammation or B12 or immunoglobulins or autoabtibodies done then I'd ask for these to be done. If you want to risk it then you could ask for a lumbar puncture. Mind was fairly horrific (7 attempts to tap) but it was worth it to get something showing at last in the form of these paired o bands. I'm feeling lousy just now and my CRP is 19 and my PV is 1.98 which is high so my inflammation levels reflect the way I'm feeling as usual. Hope this helps.
I would also make sure that the immunologist follows up on the microscopic blood in your urine. I bet that doc will check you good for Lupus also. Hope that you find some help. It is miserable to be miserable all the time. Good luck. Irish
Hello,
I had paired Oligloclondal bands when I had my first lumbar puncture and was told that any infection of any kind over a long period of time in past could have caused this, so it is entirely and utterly non-specific and does not suggest, even vaguely, any diagnosis of any kind.
ESR and/or CRP are not indicators of disease activity in Sjogren's, and in themselves are inherently non-specific for Sjogren's diagnostic purposes. For one single example, I have severe Sjogren's and my crp and ESR have never been elevated to any meaningful degree in 12 years. ESR and crp are more active in Rheumatoid Arthritis, and not so typically in Sjogren's.
You have a lot of symptoms of diabetes. Have you had routine A1C tests for long-term glucose monitoring that can be used to detect and definitively diagnose Diabetes? If not, you need routine A1C's as this single test could potentailly solve your big mystery and lead to massive relief and proper symptom treatment if you do have Type II Diabetes.
You also have symptoms of neuropathy, fatigue, heat, and cold that could suggest a hormone imbalance - have you had those whole systems tested by a good endocrinologist?
You could have a brain tumor. You could also have bladder cancer.
Just wanted to mention here that "Seronegative Sjogren's" in the linked article being discussed means that the patient is seronegative for the SSA or SSB antibodies, however, they must have a positive lip biopsy. The article says it clearly enough to make that point:
"However, more than 50% of patients with neurological manifestations of Sjogrens may not have autoantibodies. In patients who have neuropathy and compelling glandular symptoms of dry eyes and dry mouth, negative blood tests for SS-A and SS-B antibodies do not exclude the diagnosis of Sjogren's syndrome. In the context of sicca symptoms, further diagnostic studies are warranted, including a Schirmer's test, and a minor salivary gland biopsy."
If the article was saying that you could have "seronegative Sjogren's" with no positive lip biopsy, then the minor salivary gland lip biopsy would not be warranted, would it?. Julius Birnbaum (who wrote the article in the link) has stated in other articles that up to 40% of patients with Sjogren's are sero-negative, and invariably these patients have a positive lip biopsy - this is simply his definition of what "seronegative Sjogren's" is, one that is shared by Rheumatologists worldwide as is defined in each of their own publications.
Thanks SJSman (and Kitt for reposting). Firstly I was given this great link by someone on the NeuroTalk forum: http://www.clinlabnavigator.com/oligoclonal-bands-in-csf.html
When my lumbar puncture was done I was not ill with any long or short term infection. Of course it is non specific and I'm not going to request a repeat because it took the doctor 7 or 8 attempts to get tap and was pretty painful. But if you look at the table I've linked to you will see that there are a number of conditions, including Sjogrens and Lupus that are associated with paired Oligloclonal bands.
Re bladder cancer - thanks but I had a cystoscopy earlier this year and my bladder was healthy. I an to have a colonoscopy tomorrow. I do have undercarriage issues in my woman parts from bearing large babies, each with episiotomy which has left much scarring - nurse felt this was compounded by likely Sjogrens related dryness as pretty severe atrophic changes have taken place long after my early menopause. I've been put on oestrogen pessaries now.
I have already been tested for diabetes. My late father, uncle and grandfather all suffered and died from a rare type 1.5 late onset diabetes so I am highly aware of the risk in my case. The only test done in UK (or offered to me) has been a fasting glucose test and mine was negative/ within normal range a few weeks ago. A private endocrinologist I saw a few months ago (for this and my hypothyroid bloods which did not seem right to me) explained that these symptoms I have been having would only be found in end stage diabetes - and so far I'm not even pre-diabetic so this is a non starter. I am going to be seeing an NHS endocrinologist soon so will ask to be regularly monitored for this as well as my Hashimoto's hypothyroidism. But I'm assured that none of this accounts for my high CRP, ESR/PV which are all rising again despite no sign of infection or illness or active RA. I'm to have a colonoscopy tomorrow. My GP believes this might be a very relevant investigation but I'm not so sure - although I've suffered from chronic constipation since Christmas and probably have polyps, haemorrhoids or fissures now.
My new rheumatogist has requested an ultrasound of my salivary glands and advised me to have a lip biopsy. As you state SO EMPHATICALLY - this will finally rule in or out Sjogrens. I'm very much hoping that I get a positive reading, but not expecting one. The rheumatologist has echoed my previous chap in saying that he thinks the only connective tissue disease I may have is Vasculitis - and this can be very hard to diagnose. My RA is no longer active in my joints so the only other thing that might otherwise explain all my signs and symptoms is a malignancy in the form of Multiple Myeloma. I have had two negative Bence Jones test results so far and I don't believe I have cancer because my inflammatory markers have fluctuated along with symptoms for at least five years and I think I would be much sicker or dying by now if I had this type of blood borne malignancy. But, as my endocrinologist says, nothing is ever set in stone 100% with these diseases. However if my lip biopsy is negative I will strike primary Sjogren's off my list for good.
PS I should explain that I have not yet had a lip biopsy. Only my autoantibodies and and Schirmer's have shown negative so far. My Rose Bengal tear flow was very low a few years ago showing Sicca. I use eye drops and ointment and the Sicca is now only mild.
Hi Mats,
I was only trying to help in suggesting things you could possibly have. I see that you are deep into the fight of trying to figure it out, and it appears to me that you are making really good decisions. You do research and develop a theory about what could cause your symptoms, then try to get tested for whatever it is, then if the test result is negative, start the whole cycle over and move on to the next most likely thing that you can find that might explain your symptoms.
I am tired now and may have missed this, but having a head and neck MRI can sometimes provide clues to a diagnosis that might otherwise be missed. It can't hurt, however, I had a heck of a lot trouble getting one from my uncaring doctors in the cost-minimization HMO that I belonged to at that time years ago. In the end, my MRI provided the clues that eventually lead to my Sjogren's diagnosis. Brain MRI results can provide clues that could potentially lead you toward many different conditions that might explain your symptoms, that might otherwise be missed. I wish you all luck in the search!
And yes, the correct definition of what "seronegative Sjogren's" is, and what criteria must be used in a correct diagnosis of Sjogren's - meaning a correct understanding of what Sjogren's is and what it is not, are very important to me as you gathered lol.
Thanks for clarifying. Yes I had a brain and cervical MRI at the same time as nerve conduction tests and lumbar puncture last year. The only thing that showed up was some arthritis in my neck - which was not impacting on my spinal cord in a way that could explain my widespread small fibre neuropathy apparently. My RA has been blamed for damaging my small nerve fibres permanently when it was active.
But I'm very unusual in that my rheumatoid factor has gone from being weakly positive five years ago, to negative - and I no longer meet the criteria for seronegative RA because I have no eroded or swollen synovial joints. I was on injectable methotrexate, Hydroxichloraquine and Sulfasalazine for two years so this aggressive DMARD treatment might have nipped it in the bud in time apparently.
However, as my other symptoms have continued to wax and wain I have been on a very hard and twisting journey to try and educate myself and understand as many autoimmune and related diseases and comorbidities as I am able to, as a non-medic and non scientist. One of the things I have learned on this journey is that the disease criteria, which you obviously feel represent you and others with Sjogrens well, can never be 100% reliable. Of course I understand why we need criteria and have a reasonable grasp of health economics too. But there will always be a small, perhaps minuscule, amount of people who do not meet any of the criteria but still do have the disease. After all no one actually tells our cells what criteria they have to comply with in order to meet certain targets. And there are always crossovers. So I might possibly have a rare form of Sjogrens which mainly affects my peripheral nervous system so far, and a non erosive form of seronegative RA which makes my inflammatory markers raised or high simultaneously to seronegative Sjogrens. This may be very unlikely but it is not impossible.
For example I found out about this forum from someone who is thought to have Sjogrens as cause of her very rare autoimmune ganglionopathy. Her lip biopsy was negative and her mouth and eyes are only just starting to become dry many years after the small fibre neuropathy/ ganglionopathy were confirmed. As two rheumatologists have explained to me - rheumatology is a very inexact area of medicine.
So, having been using this and other health forums for a number of years, I have come across people who have many, if not all of the clinical manifestations of Scleroderma or Lupus or Behcets or Sjogren's, but because they do not meet the criteria in autoantibody terms, they are left undiagnosed and untreated while their bodies deteriorate painfully and horribly - and yet they are unable to get the support they need - each set of failing organs ir joints or dying nerves or central nervous system is treated in isolation as a problem. Terms like "functional" or "psychological" are applied to the more unquantifiable/ idiopathic symptoms. Acute or chronic symptoms such as kidney failure, heart failure, atherosclerosis, Pernicous Anaenia etc are not put in any wider context. This is because the international medical community have not yet learned enough to explain the sufferer's dire symptoms or make a connection between multiple symptoms and one overarching disease process. So rather than blaming themselves there is a tendency to for doctors to blame the sufferer - until one day Ulcerative Colitis (for example), is recognised as a disease of itself rather than as a manifestation of an anxiety disorder.
I speak here as someone only partly in the shadowlands, having been diagnosed with RA five years ago, having acknowledged autoimmunity and never having been given a diagnosis of ME or Fibromyalgia or IBS - (yet!). But I do feel tremendous empathy for those who suffer in the shadowlands without a diagnosis simply because their bodies have had the temerity not to comply with any specific disease criteria.
I'm sure you don't really need this rant but you have accidentally trodden on my own pet ants nest with your own passion for sticking to SjS criteria. I do respect this but disagree with the rigidity. I do hope you feel less exhausted soon. I'm confined to home (and nearby toilet) today, fasting and drinking laxative in prep for tomorrow's colonoscopy. Not much fun!
I don't know. I had a consultation with a oral medicine consultant this morning and she knew so much about it. She said my ANA is now a clear positive of 1/320 plus IgG is high and this leads my rheumatologist and her to advise that lip biopsy and ultrasound scan of salivary and carotid glands should be done over the coming weeks to rule Sjogrens in or out. If not the ANA and previous history of RA means that I may have MCTD. Sorry to write so much yesterday. I was feeling in abject terror about the colonoscopy - which was exceptionally painful but revealed only two large haemorrhoids. Best wishes, Mat
Good heavens Mat, please don't tell me they do colonoscopies over there whle you are awake? Glad they only found hemerrhoids! You say a possible MCTD diagnosis if lip biopsy is negative. Did they do the anti U1RNP antibody test yet? For MCTD a An ANA and high titres of anit RNP antibodies is needed for diagnosis. The RNP being specific for MCTD.
http://rarediseases.org/rare-diseases/mixed-connective-tissue-disease-mctd/
Hope this gives some insight.
Ha ha yes the NHS can't spare beds for long enough that patients recover from anaesthesia. I got a minimal sedative and pain killer administered IV, a lot of young female endoscopic nurses only, and a clean bill of health for my colon and rectum bar the haemorrhoids. I'm still feeling it badly - it really was horrifically painful even compared to child bearing large babies and a very flawed lumbar puncture. Never, never again. And I'm fairly sure no one will query why I've gone from healthy bowel syndrome to default position of constipation in six months now that bowel cancer has been excluded.
I don't have the breakdown of the ANA yet so I'm not sure about MCTD. But I'd settle for UCTD if it helped me to access more effective medication again. Assuming I could tolerate this of course. I don't like going slowly more and more numb - I keep dribbling my food down onto my front, walking very slowly on uneven or patterned surfaces and generally feeling disorientated and vaguely stoned or drunk.
Thanks for the link.
Hello again MATS,
I am pretty sick today and with CNS Vasculitis Secondary to Sjogren's and then the Sjogren's itself. Bad days can be extremely bad.
Without a positive lip biopsy, I do not believe you will have MCTD. However, with a negative biopsy you may, and probably do, have UCTD. Even though that starts with the word "Unspecified", this is a full on, defined, connective tissue disease - unspecified does not mean that they don't what you have or anything. If UCTD would change by antibodies into Sjogren's, Scleroderma, Lupus, or RA, it tends to do so in the first year following diagnosis, but may in some rarer cases take very much longer.
Ok, so you tested negative for Antibodies SSA and SSB and then asked early on if you should move to a larger hospital and also get a lip biopsy - yes, and yes as Anita said.
If the lip biopsy is positive, you could definitely have a rare form of Sjogren's that causes peripheral Neuropathy. It is extremely rare, and I have one form of this. Then you can move into seeing a Neurologist who specializes in Sjogren's. They are rare but they exist and I am sure there is one you can get to, if you can get approved for it.
Personally, if your lip biopsy is negative, I would not recommend pursing Sjogren's further, but do as you see fit on that, and also pursue UCTD of course.
A next thing to do is to get the A1C Test for Diabetes. The fasting Glucose test only tests your Glucose at the second where the sample is collected, so that test is not very accurate. The A1C test averages your Glucose over a 3-month period and is therefore, what, a billion times more accurate or something. It is common to test low on the fasting testing and then test very high on the A1C test. In other words, A1C catches Diabetes that the fasting test cleanly misses.
It would actually be nice if you have Diabetes, because although that is a huge burden and downer in general, it is highly treatable with only diet plus insulin and can go into complete remission, to the point where some are now saying that Type II Diabetes can actually be cured, with no further need for insulin once diet and weight are attained and maintained.
Here is little secret about Neuropathy that I just picked up today, in reading about Neuropathy so I could think better about your questions and situation. If what I read today is true, this is a possible way to determine if you have Diabetic Neuropathy, or some other form of Neuropathy:
Diabetic Neuropathy is the number one cause of Neuropathy which is why I am going on about this. Also, you have developed high blood pressure which is common in Diabetes.
Here are the secrets which you may already know. I am having trouble typing and thinking here, sorry. Neuropathy is usually associated with muscle weakness. In Diabetes weakness happens more intensely in the lower leg than the upper, and significantly, tends to develop in an asymetrical manner - more on one side than the other at least at first. Weakness tends to be worse in the legs than arms, and develop first in the legs. I don't even know if you have tons of weakness. No huge secret wonder I guess, but at least it is something you could read more about.
As you well know, getting properly diagnosed can take years. I fought like you are fighting to get a diagnosis non-stop for four years straight, without any breaks, although I ran into substantial roadblocks put up by doctors along the way that wasted a lot of time while I never gave up trying to find a way forward. Please keep all of us updated.
Other misc. comments: I absolutely do not believe there is anything called "seronegative Sjogren's" other than what it actually is defined as in all scientific literature: negative bloodwork with a positive lip biopsy (you already know this - this is my ant hill). The facial Neuropathy may be called "Trigeminal Neuralgia", and yes it is found in Sjogren's - but only rarely and it can be caused by other things too. You are being eaten alive by Neuropathy, if you are almost dying from it try Gabapentin, if it doesn't work take more, up to 2100mg/day. Yes, if NHS blocks another Rheumatologist, go for the Immunologist as Anita said, and also no matter what even with a neg. lip biopsy and no Sjogren's try to see a Neurologist. Wishing you all the best. Neuropathy at it's worst, with cramping, gets pretty old pretty fast. If diagnosis warrants this, try generic Cellcept first, and then generic Imuran second - these are different than the other immuno-suppressants in some ways. Lumbar puncture almost painless if done by my Neurologist, however, my first one had me screaming bloody murder until I finally passed out.
Dear SJSman. Sorry you are feeling so bad with multiple problems. As I said yesterday I will rule out SJS if my lip biopsy is negative. I have no interest in pursuing the possibility of having a disease once these are more or less excluded.
And this is why I'm not going to pursue the remote possibility that I have diabetes either. I spent four weeks in hospital with sepsis and drug induced pancreatitis and pneumonia last year. My blood sugar was often tested during these four stays. It was never raised. I'm not quite sure why you are determined that I might have diabetes 2 to explain my symptoms, when you yourself spent eight years searching in order to comfirm that you have a rare disease with multiple symptoms and crossovers?
But here is why I don't have diabetes 2 - yet. I have a long family history of diabetes type 1.5 (Mody) and, as you say, symptoms seem to tarry. So my diet and lifestyle are pretty exemplary and there's little I could do to improve these to shake off diabetes 2 if I did have it. It would be relatively simple to diagnose and treat as you say. My symptoms are multiple and have continued pretty consistently for around six years. Each specialist I've seen has tested me for diabetes and I do think it would have flagged up. I was blood monitored two weekly while on Methotrexate for over two years and three other DMARDs too. Also it would not explain my RA symptoms five years ago, my paired o bands, my highly fluctuating ESR, PV and CRP and high total protein and it would have to be very advanced to explain my symptoms. The other favourite that doctors often wonder about is MS. I don't think I have MS but it would be explained if the lip biopsy was positive.
Now that I have found out that my ANA is strongly positive and IgG and IgA are both elevated I feel vindicated in my pursuit of the feeling that I don't have RA to explain my fluctuating inflammatory markers anymore. All are sometimes found in healthy people too but not the high PV, high total protein or highly fluctuating CRP (between 2 and 30). The rheumatologist is mindful that I these also flag up in this rare form of cancer called Multiple Myeloma, which would explain my sweats/ fevers, widespread small fibre neuropathy and disequillibrium plus pelvic and rib pain and bone ache on my legs. But so would Lupus, Sjogrens or Vasculitis and this is why the clear positive ANA is so important to me. Like you I'm feeling lousy and have disorientation/ dizziness problems born of going increasingly numb everywhere including my face. This small fibre neuropathy is progressing into multiple death of nerves and loss of sensation in my feet and mouth, nose and left eye. Plus I'm exhibiting too many features of PoTS now, from palpitations and breathlessness to swinging hypotension to hyper. I need to track it down and start some treatment that halts it in its tracks somehow - before it halts me!
PS I am grateful to you for taking the time to research causes of neuropathy when you are feeling so laid up with your illness. To answer your question - almost all of my neuropathy is bilateral, with the exception only of my face which has some tingling and numbness riding up from my entire lips and gums to my left eye. Strangely it is my hands and arms that suffer most from weakness. I used to assume it was RA but not sure anymore. I have a right hand night resting splint and use soft pillows to hold them in at night - very comforting. Once diabetes has been excluded and MS - connective tissue diseases such as Lupus, Vasculitis, CREST and Sjogrens do account for a significant amount of the remainder suffering from SFN.
Hello again,
I have nothing but time to burn because I can't do anything but lay around and sleep due to illness. That is why I am on this Forum - am isolated, sick, and have little to do. Hence the long conversation in this case. Still knackered today, another day.
That you have most symptoms of diabetes and do not have it is why people who have all symptoms of Sjogren's need to have their bloodwork tested for SSA and SSB, and/or have a positive lip biopsy to have Sjogren's. That is a perfect analogy. One must be tested to know.
BTW, it is not the neuropathy in Diabetes that is asymetrical, it is the muscle weakness associated with the neuropathy - a moot point now but worth mentioning.
OK, you are on the verge of a diagnosis I think. This is how messy things look just before they break sometimes, we can hope for you anyway.
The big mess of clues you have is why we need doctors who we can trust. However, I am not sure you have them yet. I am confident they will arrive for you eventually - they do exist.
I would tend to fall back on a doctor's diagnosis at this point if I was you. They know 10,000 diseases that you have never heard of, and you likely have something you never heard of, or overlooked at some point.
However, given that people who are driven can't sit back and yield control of the diagnostic process to the pros, then here is your homework for today to potentially help you develop a new theory as to what is wrong.
This is a take-home exam if you want to play. In which of the following illnesses that are associated with the presence of serum RF factor can the RF factor come and then go - it is intermittent. Pick the ones that most closely resembly having your physical symptoms and other diagnostic clues. Good luck if you are interested in this. What else did you have to do today anyway?
Other than in rheumatoid arthritis, rheumatoid factor may also be elevated in:
Systemic lupus erythematosus (SLE)
Sjogren's syndrome
Interstitial pulmonary fibrosis
Hepatitis B, Chronic liver disease and chronic hepatitis
Essential mixed cryoglobulinemia
Primary biliary cirrhosis
Infectious mononucleosis and any chronic viral infection
Bacterial endocarditis
Leprosy
Sarcoidosis
Tuberculosis
Syphilis
Visceral leishmaniasis
Malaria
Leukemia
Dermatomyositis
Systemic sclerosis
After vaccination/transfusion in normal individuals[/i]
Sorry to read that you are confined to barracks and bored and lonely. I am in the fortunate position of being neither of these things - and count my blessings for this. There is nothing in this game I don't already know. I was diagnosed with RA five years ago with a weakly positive rheumatoid factor and bilateral synovitis in both hands, wrists and knees. These have gone now and been replaced by the pain of dying small nerve fibres. I am a research-led artist - presently working on art relating to immunlogy. I have very limited amounts of energy but masses I want to achieve so I'm never bored. I use my spoons very wisely these days!
I don't know if I have primary Sjogren's yet but I think i might be closer to rediagnosis than you suggest because of the new positive immunology. I trust some doctors more than others but would never again leave entirely to a doctor to determine what I have wrong and treat accordingly. I've learned this the very hard way through poor doctoring and drug reactions that nearly killed me last year.
And I am a member of many autoimmune communities so I have learned about many disease processes through sufferers and extensive reading.
I'm in my studio trying to work making something just now but my mind is very preoccupied with how to extract my latest immunlogy bloodwork results out of my NHS GP practice - who have it all on their computer data notes but refuse to print it off for me because they say it's their property and they have a policy of not printing out information fortheir patients. Grrrr! So if I've energy/ spoons going spare now - which I don't after the awfully painful colonoscopy yesterday - I should save it for researching my rights. But life is too short so I'm going back to my work! Take care. Mat
Quote from: irish on June 28, 2016, 08:08:25 PM
I would also make sure that the immunologist follows up on the microscopic blood in your urine. I bet that doc will check you good for Lupus also. Hope that you find some help. It is miserable to be miserable all the time. Good luck. Irish
Thanks Irish. I was going to tell you that the rheum said my pee was clear I assumed this meant no microscopic haematuria. But I got hold of his letter today and the traces of blood are still there. It bothers me, now that I have a clear positive ANA and lots of inflammation plus high RBCs, IgG, IgA etc that Lupus us still not being considered - only Sjogrens. Thanks for reminding me to look. Mat X
Oh Mat, what a pain the NHS is! A few years back, here in the US, they decided we had a right to our test results! For example Baylor, where I'm a patient at, utulizes myChart. Everytime we have a test, be it blood or imaging, they release the results and interpertation of the images to myChart. I can log in and print off any results I want. The last time I had a pft test done I got the print out from the doctor for the first time. That one was greek to me and I had no idea what the numbers meant. We can also request a copy of our file for a fee. Sometimes it makes for eye opening reading. I had to have a letter of clearance from my rheumy for my hip surgery and they gave me a copy. On it was a quick history on me. She mentioned on it I had firbromyialgia which she never told me and I could have told her that I absolutely don't have it since I asked a doctor that specifically treats it. It is just an easy out for her for my joint pain I keep complaining about since I have negative inflammatory markers. I keep thinking of ordering a copy of her files since I have been fighting with her for a year and a half about my joints.
Surely there has to be some patients rights in the NHS. I do hope you can find it!