[MAT52]

Hi. I've come here at the advice of a friend who is ahead of me with her neuro issues.

This is a long and sorry tale but I need to learn more and this seems to be the best place to come to find others in similar boats.

I have Hypothyroidism, a confirmed diagnosis of Rheumatoid Arthritis and have had these nerve symptoms for about five years altogether. This started with deep heat surges in my peripheries - especially in my wrists. I thought this must be a faulty menopausal symptom. However as it continued I also developed polyarthritis with red hot coal sensation in the soles of my feet and after nine months, when it settled in my hands, I was diagnosed with seronegative Rheumatoid Arthritis and put on Methotrexate, having already tried steroids and a DMARD my GP prescribed and had an allergic reaction to it. The strange heat continued and then the pins and needles started in my peripheries.

After two years on Methotrexate with Hydroxichloraquine I was taken off both in case they were causing my neuropathic symptoms. However they steadily worsened and I was having lightening bolt pain in my hands and feet and elsewhere on a daily basis plus cold wet sensation in my legs, aching on inner sides of my ankles and up my shins rather like funny bone pain and burning pins and needles in my feet and hands. My medical team dragged their heels and I stayed off the immunesuppressant drugs for about 8 months and then my rheumatologist decided it was just a mild small fiber neuropathy probably - (I think he was thinking it might be fibro or in my head) and put me back on both drugs. I had to come off both for severe side effects after four months but during this time I was also put on a Raynauds drug by my GP - and the combination worked very well for my RA symptoms and for the neuropathic pain.

But once again I had severe tolerance issues so had to stop all three drugs and since then - 8 months ago - the neuropathic pain has been terrible. My Rheumatologist continued to be dismissive and said my RA was quiet and non erosive so told me to stay off immune suppressant drugs and hasn't seen me since for review.

Meanwhile my GP referred me to a neurologist - who felt I had an advanced SFN by this time and that it was progressing. So two weeks ago I was given MRIs of my brain and cervical spine - all clear apart from some neck arthritis, nerve conduction tests EMG - also clear - and a lumbar puncture followed by serum blood tests for Lyme and many other things.

The special blood results are still not back but my GP explained that my lumbar puncture has shown high levels of Immunoglobulin - which he says confirm that I have an immune mediated small fiber neuropathy. Apart from a high ESR and CRP and raised Rheumatoid Factor all my autoantibodies have been negative to date - apart from Peridoxase Thyroid Antibodies which were raised when I had them privately tested two years ago.

My thyroid bloods, B12, full blood count shows nothing else amiss apart from inflammation. As well as the nerve pain - which now goes right up my legs and arms I have sweating issues - either don't sweat at all or suddenly sweat inapropriately. My toes go bright white every night and I wake three or four times a night with burning limbs which I try to cool down using cool water or even standing outside in the snow! The wet sensation in my legs is now up above my knees - which also burn and throb but no sign of redness or swelling.

As well as three RA drugs I've also tried Amitriptyline for three years - came off because of severe heart palpitations eventually, Gaberpentin for 3 scary weeks and now take a low dose of Duloxetine/ Cymbalta 30mg.

At the neurophysiologist's suggestion I looked into Erythomelalgia - a rare flushing/ burning condition - and read that Asprin can help. So with my neuro's support I am now on Asprin for two weeks and it does seem to have made a big difference to the pain although the pins and needles are still raging. It is making my tummy hurt though despite taking with meals and adding Ranitidine. I am to drop down to 20mg Duloxetine on Friday to see which drug is helping, if either. Failing this my neurologist has suggested I start Carbemazepine. I've read up and don't much like the sound of this one.

I would like to get back onto trying immune suppressant drugs I think - but as my RA has disappeared and I only have lower backache - thought to be wear and tear arthritis - my two consultants are more interested in treating symptoms than in getting me back onto disease modifying drugs apparently. This worries me. Ideally I would change to a new rheumatologist but I can't because I depend on the NHS and live on a Scottish island.

Sorry this is SO long! But anyone's experience of Carbemazepine and also of immune mediated idiopathic SFN would be really interesting to read. Thanks!

[Kitt]

Welcome MAT52.

[Lara]

Hello MAT52,

Welcome to the NeuroTalk Support Groups.

I see you've found the General Health forum, but there are others more specific that might be of help to you as well.

For a start you could do a full forum search for posts using the keyword = Erythromelalgia .
* It needs the correct spelling to bring up the posts.

Peripheral Neuropathy Forum

PN Tips, Resources, Supplements & Other Treatments

Arthritis forum
For both Osteo and Rheumatoid arthritis.

Autoimmune Diseases Forum

At the top of all the forums are what are called the "Sticky" threads and they have useful websites and resources there as well.

You've found a great place here to find support and information.
take care there.

[Feck]

Hello, MAT52. I wish you well.

[Darlene]

MAT52,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[MAT52]

Many thanks to those who have welcomed me. Sorry not to have responded sooner but I thought I would receive an email notification as with other forums I use? Then a friend from another RA forum just explained to me that this forum doesn't send email notifications so I came back on and found these! It seems a very good site in so many ways that I will put in the effort to learn how it works now. Thanks! Mat

[Lara]

Hi again,

You can set that up in your User Profile.
User Profile is top left of screen just under the NeuroTalk logo.

It's not set as default as some people don't use it I suppose.

If you go to your User Profile then to Edit Options in Settings and Options and you'll find the settings in there.

FAQ: NeuroTalk FAQ/Help


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[MAT52]

Thanks Lara - I did as you suggested and hope to get email notifications now.
Take care,
Mat

[Lara]

Hopefully that works.

A few people here have mentioned their notifications end up in their spam box though, so it's always worth checking there if you don't get any. It depends on the spam filter.

[MAT52]

Thanks Lara. I did it and your comment just popped up in my mail box! Mat x