Mayo / Johns Hopkins neuropathy

[smitty]

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 (see e.g. http://www.ncbi.nlm.nih.gov/pubmed/9109867).  So,

1. for people who have been to these clinics or other renowned clinics for neuropathy/neurological problems, was it worth while? I don't want to go 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!

[Stillinlimbo]

Yes, please give us info, as I was thinking about MAYO clinic too.y
Can I catch a ride with you ?
Cathy

[Kimi]

I have been to the Mayo clinic for other things and have been really impressed with them and the whole experience. But as with any clinic you go to do your home work first (as you are already doing) and research the Dr as much as you can ahead of time. Be picky and get just the Dr you want and feel is going to be the best for you. I am lucky and only live a couple of hours away from there so a return visit is not that hard for me to do.

When you come to the Mayo, know most visits last at least 3 days. (some can last for weeks) First day you will see the Dr and that is a good hour long talk and exam. Then they will have you go come where else a couple of hours later to pick up your seclude of tests, x-ray, other Dr they want you to see and such. Those appointments may take days to complete.  I suggest getting a hotel close enough to walk to the clinic. Most of the hotels I have been to seem to have wheel chairs there to use if needed plus shuttles to get you to the clinic. Those don't always run at times that work for you this is why walking dist is a good thing.

Do plan to go back when you can to rest at the hotel  or use the resting rooms and areas at the clinic.You will be amazed at how tiring all this is even though you are sitting around most of the time.  DO NOT be late for any apt or they may not be able to get you a new one in a timely manner. My apts were mostly a couple of hours apart so we just went to the  next area and waited. They have tables with puzzles to work on and I always bring a craft.

The staff and volunteer's there are top notch! I can not say enough good about how friendly, kind, helpful and comforting they are! Some f the Dr'e I have seen are great and some are pompous jerks. Thankfully the staff makes up  for them.

Wear loose comfy clothing and good walking shoes! Do not feel strange if ya need to use a wheelchair if ya get tired. They will even have some one come to push you where ya need to go if needed.

We always bring a backpack or smaller suitecase that has a handle and wheels so we can pull it along with us. All medical records go in there as well as water bottles, snacks and things to do while waiting (bring a deck of cards!). Some people even put in a small pillow which I would do next time too. Dress in layers too even in the summer. One area will be really warm and the next cool.

Know this does not help as far as Dr's but if ya come to the Mayo it will help!

kimi

[irish]

Being a Minnesota native I think that I would be more apt to want to see Dr.  Julius Birmbaum who has a sjogrens clinic at Johns Hopkins, I believe. He should be in the archives under the neurological topic. Maybe if you do a search you can find info on him.

He had started the topic and done a lot of posting for a while. Explained about his sjogrens clinic that he had started and seemed very knowledgeable and willing. If need be maybe one of the moderators would have more info for you.

I have been to Mayos many, many, many times and they told me I didn't have sjogrens - really bad luck and not a very good experience. You just have to do the investigating and make your own decision. Irish  

[Kimi]

You are right about investigating and making your own decisions. I know my experiences at mayo have been good but yet I have heard horror stories too. This is why researching the Dr and seeing who you really want to see is so important. I also never go to any Dr with out my "LIST". LOL I start writing down things weeks ahead of time and ask for what ever test i really think I need done. If the Dr will not listen to me or do tests I know should be done, like the TSH antibodies, I try not to go back to them. We really do have to be our own advocate don't we???

Kimi

[Stillinlimbo]

Does anyone live in Killeen, Texas and know of a good neuro there?
Cathy

[hoping]

Have done Mayo and also was not impressed with the neurologist.  Also often saw the fellow in training for majority of visit.  Do your homework.  Was told I do not have SJS by Mayo because lip biopsy was not blossoming with inflammatory cells.  Yet it had what I've read in medical journals quailifies as positive for SJS.  Confusing.  I am seriously considering JH.

Karin

[Kimi]

I saw an endocrinologist there and was happy with Dr Hay who I saw. I do have to say the staff was great. Kimi