Paired Oligloclonal bands and seronegativity anyone?

[MAT51]

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

[Tharrell]

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.

[MAT51]

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.

[SJSman]

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.

[MAT51]

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.

[SJSman]

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]

[MAT51]

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

[MAT51]

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 

[Tharrell]

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!