[smitty1]

Other than severe dry eye my main problem is peripheral neuropathy (hands and feet). In general the pain is mild and tolerable. However if I type or write or do repetitive tasks, I immediately get intense burning pain in my hands and fingers and at the same time a very cold feeling. This is a significant disability for me as writing and typing are critical for my career. I have seen many doctors and have had many tests and all of the test have been negative. The doctors think that Sjogren's is the best explanation at the moment and think it may be helpful for me to see someone who specializes in it. I know that Johns Hopkins and the Mayo Clinic have doctors who specialize at the intersection of neurology and sicca syndrome / sjogren's. So,

1. for people who have been to these clinics or other renowned clinics for neuropathy, was it worth while? I don't want to spend the time and money if they're just going to give me lyrica and tramadol ( which I've already tried) and send me back. Are are there other treatments or drugs for neuropathy that people have found helpful?

2. For those who have tried prednisone or a plaquenil did it help with neuropathy / neurological problems?

Feel free to PM me. Thanks!

[nide44]

There's a doc at Hopkins who's taking on patients specifically for a Sjrogren's study.
I think it was Dr Steven Cohen, if I remember, it was either:
scohen@jhmi.edu or
stevencohen@jhmi.edu
There was a thread regarding this, a coupla months ago.
Try to do a search & find it.

[Raglet]

hi there

I have been on plaquenil for my lupus for many a year, and to be honest it hasn't really done anything for my PN, or for my lupus/ sjogrens come to that. But, my doctors insist that I keep taking it incase it is doing something, so it goes into my daily pill box.

I do know that some have great success with plaquenil - just not me!

cheers

raglet

[daniella]

I would suggest you try to fax over your records for them to review and to see what they feel? I know in the start I faxed them to Mayo and may again because I have so much more conditions now but they can review them. I am not sure of Hopkins. I am not sure if you have been to any pain clinics in your area but that may be a starting point as well. I do think Silverlady who also has both went to Mayo if I recall and so you may want to email her for thoughts. I too have severe dry eye in addition to this and it is horrible. Good luck in your hunt for care

[cyclelops]

After months of chasing down records and sending them to Hopkins, flying 1200 miles one way, I left there without even a blood test!

Since I came home, more testing was done on me and I have an ANA of 1:1280, (still negative on SSA, and all the specific tests). I have an elevated CD4+ count. The docs here are continuing to work on what is going on with me.

I wish I had taken my money and flown to the Bahama's not to Hopkins Sjogren's clinic. Now perhaps they have a new doctor there now at that clinic...Hopkins is excellent. If they want to fly me out and pay my bill and work me up, fine, but until then, I consider my trip out there a freaking waste of money. I brought along a slide of my salivary gland, with the pathology report, which was shoved in my face by their doctor 'very busy, have other patients to see'. That slide sat in their pathology lab for several months, while I am thinking it is being read. It was not until I inquired, was I told they did not have the original report, and could not read it. Well, of course, they did not have the original report....it was almost shoved up my nostril. I requested it back, and it did come back, so some one does know how to use the mail service there.

From what I have read of what other members got at Mayo, it was at least a week of testing. Make sure you go some where that has an autonomic testing center.

That said, the new trend in autoimmune diagnosing IS, if you do not have the specific disease antibodies, such as for Sjogren's, or scleroderma or the several dozen others, you are simply not diagnosed....or you get the seronegative diagnosis, which depending on which doc you see holds water or does not hold water.

There are many seronegative spondylarthropathies that should be explored. Sarcoidosis does not get its due as far as a possible diagnosis. Sicca Syndrome comes with many, many diseases, including a malfunctioning neuro system. I assume by now they biopsies your minor salivary gland to see if it is inflammed. That can be done nearby and sent to Mayo for reading....or any other place you choose. Mayo read mine.

I think more autoimmune diseases are NOT diagnosed than diagnosed. You get all these abnormal tests and the docs seem to not know what to do. Some of this is due to the treatments being so darn toxic. (Plaquenil is one of the least toxic and did squat for me but make me itch hideously all night). I suppose we could have tried a lower dose. Do your research on the TNF blockers. The key is to find a drug that helps not hurts, and I think the rheums are very aware of this.

It was also helpful for me to have the T Cell panel, which is not a usual test, but it indicated my T lymphocytes were running rampant.

My salivary gland biopsy is full of lymphocytes to the max. It isn't scored. There are more lymphocytes than normal tissue. Gosh, I would like to see my eyes, they are worse.

Once you get diagnosed, your issues are not over....then you have to choose treatments.

It is like being on a merry go round. I hope they find the answer and you can get off.

Which brings me to a new issue I will post on a new thread regarding IVIG....I need a techie to answer this question.

[Chris Donato]

Originally Posted by smitty1

Other than severe dry eye my main problem is peripheral neuropathy (hands and feet). In general the pain is mild and tolerable. However if I type or write or do repetitive tasks, I immediately get intense burning pain in my hands and fingers and at the same time a very cold feeling. This is a significant disability for me as writing and typing are critical for my career. I have seen many doctors and have had many tests and all of the test have been negative. The doctors think that Sjogren's is the best explanation at the moment and think it may be helpful for me to see someone who specializes in it. I know that Johns Hopkins and the Mayo Clinic have doctors who specialize at the intersection of neurology and sicca syndrome / sjogren's. So,

1. for people who have been to these clinics or other renowned clinics for neuropathy, was it worth while? I don't want to spend the time and money if they're just going to give me lyrica and tramadol ( which I've already tried) and send me back. Are are there other treatments or drugs for neuropathy that people have found helpful?

2. For those who have tried prednisone or a plaquenil did it help with neuropathy / neurological problems?

Feel free to PM me. Thanks!

How do I send you a reply?
My husband has the exact symptoms you have!
I am hyperventilating to have found someone else in the world with Sjogrens and PAD1
Help!

chris (wife)

[Koala77]

Originally Posted by Chris Donato

How do I send you a reply? ...

Hello Chris, and welcome to NeuroTalk.

In answer to your question... if you want to reply to a thread, you're doing it just right.

If you want to reply to some-one privately, then click onto their user name (on the left of your screen, and above any avatar they might have). You will then get a drop down menu.

The second option on the drop down list says 'send a private message to.....'

If you click that one, you can send whatever you want, to the person that you chose.

I hope that helps.