Hi,
My name is Donna and I am new to the group. There are a few people here that I know from the NYC PN support group - Melody & Glenn. Hi Melody & Glenn! (Let me take this opportunity to say that Melody is probably the best baker this side of the Pecos)

I have peripheral neuropathy in my feet and lower legs. I have Waldenstroms, Hepatitis C and vasculitis. The neuropathy led to the Waldenstroms diagnosis, which led to the HepC treatment, which led to a severe exacerbation of my neuropathy, which led to a sural nerve biopsy and the vasculitis diagnosis.

I was treated with massive pred and cytoxan for the vasculitis. Later I started plasmapheresis and rituxan.

I'm frustrated with my treatment and the response to my treatment and some of the uncertainties as to what is causing what and what might help. With multiple diseases, sometimes it feels that everything goes in circles.

I really want to get another neurology opinion and am wondering if anyone has gone as a patient to Wash U in St Louis?

Thanks alot!

Donna Mae

--welcome to Neurotalk. Good to see you here (and I won't rest until I get all of the members of that support group to visit on a regular basis).

Have you been over to the peripheral neuropathy section of the board yet?

http://neurotalk.psychcentral.com/fo...sprune=-1&f=20

Mel and I, and a lot of other stalwarts, do much of our posting there, and the Useful Websites section at the top of the page has a lot of, well, useful information (and you'll recognize the much of the material from my presentation at the last meeting from one of my long posts there).

I vaguely remember one or two people in the past talking about having gone to Washington University for work-ups, though I believe it was quite a while ago. A considerably greater number have been worked up at Johns Hopkins in Baltimore, or Cornell-Weill in NYC, and some at Massachusetts General in Boston and Jack Miller in Chicago, and Jacksonville Shands in Florida (all neuropathy "centers of excellence"), as well as some at the various Mayo Clinics.

Hi Glen,
THanks. YEs I am browsing thru the PN section. So much info.
I sent an email to the WUSTL head - Pestronk- with a short version and longer version of my situation. Within a few minutes he sent back a two line reply saying they are always happy to see polyneuropathy cases. I thought that was a little wierd becasue I was told I had mononeuritis multiplex. Before I replied, I verified that mononeuritis multiplex is not a polyneuropathy. So I replied that I was diagnosed with mononeuritis multiplex and does he incude that one. Well, no answer from him.

Am I being picky or wot? Why would he limit the type of neuropathy and then not at least answer that yes, they work with lot of mononueritis MP, or even maybe that they could have a different diagnosis.
I just feel that [I]ve been to too many doctors and I dont want to be traipsing around if I cant even communicate with someone or they are so arrogant as to not give the courtesy of a response. Even if it was a duh question - like of course we see them all.

I was looking at Chicago at one point also but I think WUSTL has some unique antibody tests.

I really need advice becasue I am floating.

Donna

Welcome to NeuroTalk:

You certainly have alot on your plate with these medical conditions!

I have to ask...are you worse after the Cytoxan treatment? That is a powerful chemo agent, and can damage your normal cells and the mitochondria in them. Some PN's from chemo treatments arise from that kind of damage.

Hi Mrs. D, (Im sorry that this is so long)
I love your buttercups! I've been browsing through some of your posts and I see you have a wealth of info on drugs, supplements, etc. When I get settled, I want to pick your brain on some stuff.

I cant say I was worse after the cytoxan. (Other than the day after infusoin when I couldnt get out of bed) And even the 80 mg of pred daily (except for weight gain and hi BGs). What was happening to me in Jan and Feb 2010 was that I would wake up in the middle of the night and my ankle would be paralyzed. More right than left. My brain would say "move, move", but there was NO response. Very scary. I stopped the alpha interferon/ribavirin for the Hep C but continued for awhile to get these attacks (although in all fairness, I did have a minor attack like this in Jan 2009 before meds). My neurologist said it was actually nerve strokes. Then the numbness sets in, then the pain follows.

The scary thing is that three days after my maintenance rituxan in
March, I had another one of these attacks. THe doctors, amazingly, are dismissing it. THis is the same neuro who kept telling me the vasculitis is under control becasue I havent had any more attacks. Then when I had this one, her response was - Well, it was a small attack. The rhematologist said - Oh you had a reaction to the rituxan. So what? As if its not big deal. BUt this is a big deal becasue these events are why I need a cane to walk now.

I know that rituxan is used for my lymphoma and for HepC related vasculitis. But I am so afraid that I am having another paradoxical reaction and will get more attacks from it.

At first my doctors (except one - the rheumy) were suspecting the interferon as stirring thigs up in my immune system and making things worse, and when I voiced frustration that there there was lack of agreement, now they are presenting a unified face and saying that its the Hep C that is causing everything and I should go back on interferon.
I know I sound paranoid, but I think there is a reluctance to blame a drug (especially the only drug right now for Hep C. Even the protease inhibitors that were just approved are in addition to interferon, not in lieu of)

INterestingly, my hepatologist is sort of one the fence - on the one hand she is agreeing with the rheumatologist and a researcher at Rockerfeler U that it is the Hep C. BUt she also says to me - I cannot see you giving yourself this shot every week after what you went through.

So you see, this is why I feel that I need some totally unrelated opinions. I used to feel marvelously better right after my plasmapheresis but I cant even say that anymore.

Most days all I can do is get through work and come home and collapse. THen sometimes I have some really good days. I am just so confused.

ANy comments you have would be appreciated. THanks.

DonnaMae (actually I'm usually plain Donna but I think you have another Donna.)

It's GREAT that you know GlennTaj and Melody.... they are wonderful people and are much loved by many!

I see that Glenn and MrsD have given you some great information!

Please feel free to roam around and join in anywhere!

If you have any questions, concerns, comments, or need any assistance in finding your way around the forums... please don't hesitate to ask... someone will always be around shortly to help in any way that we can.

I look forward to seeing you around the board.

Abbie

Hi Donna:

Are you coming to the next meeting?

Today I made a batch of brownies. You would have LOVED them. lol

Don't know what I'll make for the next meeting but they will be nice.

Hope you are having a good day and I shall see you soon.

Take care

Melody

Hi Mrs. D.

Love those buttercups!!!

--the distinction between mononeuritis (or mononeuropathy) multiplex and polyneuropathy is not that important--it is one of nomenclature, not reality.

Mononeuropathy was coined for those who have damage to one particular nerve tract, and monneuropathy multiplex for damage to several, particular nerve tracts. But as things get more systemic, the distinction between polyneuropathy and mononeuropathy multiplex blurs into nonexistence. There's really no distinction between a condition that affects many nerve tracts and one that affects many nerves, unless some have to make it for insurance reimbursement (and I think the categories are more archaic than useful).

It's more important to characterize neuropathies by type of fiber affected--small vs. large vs. autonomic--by type of damage--demyelinating vs. axonal-- or by cause, if one can be found.

Glenn:

Want to know what scares me?? I understood everything you wrote. Now THAT would not have been the case years ago.

I think it's all the time I spent learning about neuropathy by coming to these forums.

Glenn, you should have gone into the medical profession, because God only knows how good you would have been in research.