[MAT52]

I am in an autoimmune shadowland presently. Diagnosed with RA four years ago but now with mostly neurologic and neuropathic symptoms - nothing has yet shown up in my blood or by MRI, Lumbar Puncture, blood or nerve conduction so it is classed as idiopathic small fiber neuropathy. I also have TMJ and my face goes numb and I'm often dizzy - can't swing my eyes round without feeling I might keel over.

Is it possible, despite a clear brain MRI to still have MS?

[Starznight]

Yes it is possible. MS lesions can be in the brain, or the spinal cord or both. It is 'usually' in the brain as if there's much that's usual with this disease, but can appear anywhere in the central nervous system. If you or or your neurologist believe you might have MS, often times a spinal tap will also be done despite a clear MRI to look for the presence of O-bands (oligoconal bands) in the spinal fluid. The o-bands are only found in about 80% of people with MS, so it also isn't a definitive test either.

All of that makes getting an MS diagnosis quite difficult, it really likes to hide well sometimes. However, my fingers are crossed for you that it's not what you have and if it is, that the doctors will discover it quickly, and that you find answers to whatever is going on soon.

[MAT52]

Originally Posted by Starznight

Yes it is possible. MS lesions can be in the brain, or the spinal cord or both. It is 'usually' in the brain as if there's much that's usual with this disease, but can appear anywhere in the central nervous system. If you or or your neurologist believe you might have MS, often times a spinal tap will also be done despite a clear MRI to look for the presence of O-bands (oligoconal bands) in the spinal fluid. The o-bands are only found in about 80% of people with MS, so it also isn't a definitive test either.

All of that makes getting an MS diagnosis quite difficult, it really likes to hide well sometimes. However, my fingers are crossed for you that it's not what you have and if it is, that the doctors will discover it quickly, and that you find answers to whatever is going on soon.

Thanks very much. My spinal tap was contaminated by trauma (took 7 attempts) so not entirely reliable I was told but the neurologist seemed to think the O bands they examined made MS unlikely as they matched the blood taken. I have reached the stage where I would even be relieved by a diagnosis of MS to be honest.

Having a face and mouth that is often numb and tingling or very sore, long standing dizziness, longstanding and widespread peripheral nerve pain (small fiber) which makes my legs crawl with wet sensation or else burn at night -with RA symptoms which have disappeared - is making me feel as if I'm in the XFiles and it would just be a relief to know what it was.

I do have confirmed autoimmunity so I wonder if I might just have mild overlap with RA and MS rather than one disease badly perhaps? Seronegative lupus is another possibility as is Vasculitis or Scleroderma. None of it is great really but a name would help me psychologically I feel.

Thanks for your help. Mat

[NurseNancy]

if you look up McDonald Criteria you'll see what the drs have to look for to make a dx of MS.

sometimes it takes a while for lesions to show up on an MRI.
the waiting and testing can be difficult if these don't show up right away.

keep a sx (symptom) journal to track dates and sx's. it may help the dr to see what is going on.

keep us posted.

[MAT52]

Originally Posted by NurseNancy

if you look up McDonald Criteria you'll see what the drs have to look for to make a dx of MS.

sometimes it takes a while for lesions to show up on an MRI.
the waiting and testing can be difficult if these don't show up right away.

keep a sx (symptom) journal to track dates and sx's. it may help the dr to see what is going on.

keep us posted.

Thanks very much. I will look these criteria up. I live in the place (a group of Scottish islands) with the highest MS rate in the world. I do therefore trust that my neurologist knows what to look for. But it's good to also know what the small minority of MS sufferers who don't fit the criteria show. I just got print outs of my test results from the neurology tests in January. The CSF results and all results are within normal range as far as I can see apart from the O band screen which has nothing beside it - presumably this was because of the contaminated fluid.

Album, glucose and protein levels were all within normal range and cryoglobulin was negative so not Lyme. He must still be concerned about my symptoms though because he said he was going to speak to my rheumatologist.

Having failed to tolerate (severe reaction) four immunosuppressant drugs for RA now - they will not want to start me on the newer biologic drugs if there's any possibility that I have MS because these can cause or make MS much worse I believe.

Again many thanks.
Mat

[MAT52]

Results from January - MRI of brain shows signs of small vessel disease normal for my age 52 (bit depressing that! )

CSF; albumin level 229 (0-380)
CSF: glucose level 3.1 (1.7 -3.9)
CSF: protein level 362 (0-700)

Cerebrospinal fluid level IgG 34 (5-64)
CSF appearance Visible
CSF oligoclonal band screen - (blank space)?

My tap results were partially contaminated by trauma so not sure if this explains the blanks?

Serum cryoglobulin level - normal
EDTA blood -Treponema pallium - Negative
IgG level (blank space)?
Venous blood Borrelia burgdorferi IgG negative

Serum ACE level 37 (8-52)
Plasma glucose level 4.9 (3.7 -5.6)

The neurologist told me a few weeks ago that something in these had flagged up as probably autoimmune or infection but I can't see what this could be from these results. Any ideas anyone?

Presently my white blood cells and lymphocytes are a bit high and so are my liver enzymes but the anaesthetist said this is probably because of the Prednsilone and not a worryto him re my surgery

[Starznight]

It could have to do with the albumin and igg levels. Even if they're both with in the normal if the ratio is off then it could mean infection. Sort of like how you can have an increased risk of a heart attack even if your cholesterol levels are all within the 'healthy' mark. If your ratio of good to 'bad' cholesterol is off, is too far tipped towards bad, it's just as bad as if you had high cholesterol.

[MAT52]

Originally Posted by Starznight

It could have to do with the albumin and igg levels. Even if they're both with in the normal if the ratio is off then it could mean infection. Sort of like how you can have an increased risk of a heart attack even if your cholesterol levels are all within the 'healthy' mark. If your ratio of good to 'bad' cholesterol is off, is too far tipped towards bad, it's just as bad as if you had high cholesterol.

Thanks very much for this explanation. Yes this makes sense now you mention these readings. More recently my liver ALT has gone up quite high and so has my GammaGT. I had assumed this was due to the steroid but I had pancreatitis as a drug reaction last month and before that, pneumonia, so it's been a lousy year. I am very freaked out by the increase in parasthesia/ neuropathy in my legs and arms and the dizziness as I drop steroid doses.

My rheumatologist has just emailed a brief update to say that he and my neurologist have spoken about me and will be referring me to a colleague specialising in Vasculitis. Vasculitis is a possibility but wouldn't explain the dizziness and numb tingle in my face I feel.

[tkrik]

These are just my thoughts. Obviously, I'm not a doctor so keep that in mind.

When did the numbness and tingling start? Did it start right after you or during the time you were on antibiotics? If so, what antibiotic were you on?

Vasculitis can cause some dizziness, numbness, tingling, pain, etc. Hopefully, the specialist can help with that. There are other autoimmune disease that can cause neurological symptoms as well. In some people, RA can have neurological symptoms.

Lesions may or may not show up on MRI. Some lesions are too small to detect or are there but not in that particular slice on the MRI. MRIs are 1/4" slices and a lesion could certainly be hanging out in between the slices. But, it will eventually show up in another MRI. As my neuro said, damage is still taking place behind the scenes and may not show up for a while. Hence the reason he wants all his MS patients on some sort of DMD.

Some medications that are used for RA can also be used for MS. My neuro listed them off for me but I can't remember what they were other than methotrexate and Rituxan (which is a biologic). It's just something to keep in mind as there are crossover medications that you can take.

Your blood work looks normal but as Starz mentioned, the ratio of things can be out of sync and be causing a problem.

Keep in mind, some diseases take a while to be diagnosed. The answer will eventually come. Just be patient, keep a symptom log with the date, how long the symptom lasted, did anything bring it on and did anything relieve it, etc. It will help keep you on track and you may see a pattern emerge.

Good luck and feel free to ask us any questions while you are going through this.

[MAT52]

Originally Posted by tkrik

These are just my thoughts. Obviously, I'm not a doctor so keep that in mind.

When did the numbness and tingling start? Did it start right after you or during the time you were on antibiotics? If so, what antibiotic were you on?

Vasculitis can cause some dizziness, numbness, tingling, pain, etc. Hopefully, the specialist can help with that. There are other autoimmune disease that can cause neurological symptoms as well. In some people, RA can have neurological symptoms.

Lesions may or may not show up on MRI. Some lesions are too small to detect or are there but not in that particular slice on the MRI. MRIs are 1/4" slices and a lesion could certainly be hanging out in between the slices. But, it will eventually show up in another MRI. As my neuro said, damage is still taking place behind the scenes and may not show up for a while. Hence the reason he wants all his MS patients on some sort of DMD.

Some medications that are used for RA can also be used for MS. My neuro listed them off for me but I can't remember what they were other than methotrexate and Rituxan (which is a biologic). It's just something to keep in mind as there are crossover medications that you can take.

Your blood work looks normal but as Starz mentioned, the ratio of things can be out of sync and be causing a problem.

Keep in mind, some diseases take a while to be diagnosed. The answer will eventually come. Just be patient, keep a symptom log with the date, how long the symptom lasted, did anything bring it on and did anything relieve it, etc. It will help keep you on track and you may see a pattern emerge.

Good luck and feel free to ask us any questions while you are going through this.

Thanks very much for this response. I understand that none of us are here as medically trained people but it's extremely helpful to learn more from those who's journeys overlap and who have far more knowledge and experience of a particular disease than I do.

I suspect the results I've put up here were through before the ones my neurologist referred to as there are some blanks on the list.

The thing that my friend and I noticed during my recent VC appointment with the neurologist was that he changed his approach towards me dramatically during the consultation. He started out on a default position - listing tests he ran in January and explaining how they showed nothing amiss. We spoke about Cymbalta side effects and how I'd come to try Imuran recently and the ensuing pancreatitis.

Then he got the young doctor to do a rudimentary test on my eye responses and feet and hands and this is wheh he seemed to suddenly change his previously dismissive tune. He said that there was one result from January which had flagged up positive for autoimmunity or infection. I explained that my rheumatologist had agreed that my small fiber neuropathy was probably part of my diffuse RA inflammation. But that until my RA comes back as synovitis I will not meet the nhs criteria for biologic drugs - hence starting a fourth disease modifying antirheumatic drug - Imuran. Once I explained this he immediately said he would speak to my rheumatologist and my friend and I got the impression that something had shifted for him and he then mentioned the Vasculitis professor.

It seems they are all speaking to each other about me now so I guess this is progress. I'm not saying I was misdiagnosed with RA but I think methotrexate chased it off. But the neurological symptoms actually affected me prior to the start of the RA and I have, as you suggest, made a record of them. They went away once I got onto injectable methotrexate and came winging back within weeks of stopping two years later. I don't think this can be a coincidence but unfortunately my drug reactions have all been too severe to put up with (spewing both ends for two days each week after the methotrexate).

I think the RA diagnosis has distracted everyone from the neuro symptoms because they crossed over so much initially. No one has checked out the cause of the dizziness yet. The facial pain, tingling and numbness was dismissed by a maxillofacial surgeon as TMD caused probably by bruxism because I'm in so much pain elsewhere. I agree the mouth, jaw and nose issues aren't arthritic but I don't think it's all down to bruxism and TMJ neuralgia either. Numbness and tingling around mouth and face are rare with TMJ.

Sorry I'm waffling here. I don't think I do have MS thankfully - but nor have I entirely ruled it out and certainly don't think the neuro issues are all part of my RA as previously supposed. I probably have a mixed connective tissue thing going on but the neuropathy and dizziness are far worse than the joint pain is to me.