[DejaVu]

HI!

I had posted my history with neuropathy on my intro, thinking it would post here. I am so tired...I cannot rewrite it all today. (It is on "new member" board.)

I want to see if a moderator can move a copy of that intro over to this forum?

Basically...severe neuroapthy several years ago. Sensory, motor and autonomic (sx. of autonomic). Docs had prescribed plasmapheresis. (I did not do that. I took a nutritional route. I am not recommending people not take their doc's advice. It was a personal decision/choice/chance I'd taken.)

All signs/symptoms of neuropathy had been elimiinated...eventually and no sign could be found by neurologists three year as ago.

Just had a recent "exacerbation!" Hard hitting and rapid advancement. Involved feet/legs and hands/arm, including all of the pain/sensory sensations and weakeness. Both legs became extremely weak over this weekend. Severely so. All has occurred over approximately 4-6 weeks, with the worst occurring over the past 2-4 weeks. Saw neuro 2 weeks ago and things have advanced since then.

Neuro had ordered tests two weeks ago. No tests have been scheduled yet by his office/neuro testing unit. Any follow-up visit with him is awaiting the completion of testing. Yet, I don't think it is wise to allow this to continue to get worse (rapidly) while waiting for "the medical system" to "sort itself out!"

Have contacted neuro. Awaiting response.

Have other conditions autoimmune and/or rheumatological that also cross over into neurological area, as well. Will elaborate on those more soon.

I am very tired. I wish the other post had "landed here!" I will try to write more later on.

Thanks for being here and for letting me in the door!

Hope for all!

DejaVu

[Chemar]

Hi and welcome

i copied your intro post on the New Members Forum over here for you and merged it in above

all the best
Cheri

[BEGLET]

Sorry you have to deal with all this so suddenly - but you will find lots of knowledgable people here... there are "stickies" listed with lots of information too at the beginning of the site which are very helpful too., and I'm sure many members will post..

From the very rapid onset you are having - (and your experience before - did they diagnosis you with GBS? or CIPD? ) ... they are usually treated with plasm. or ivig, and can spread very quickly, and the automomic symtoms can be very serious.... It sounds like you have a neuro on your side - but please, if the symtoms continue to spread (e.g. any trouble breating, etc.. and your neuro cant help you right away - it may be worth going to ER - which I know is a nightmare - but again - spreading so rapidly it sounds like you need to be checked out right away and if needed - treat you quickly.....

Sending good thoughts - and again, just encourage you to push your doctor - emphasizing how quickly this is spreading and poorly you feel.....

Take care...

[DejaVu]

Hi!

Thanks Cheri for moving and merging!

I'm not sure how I had messed that up so! ( I am very tired and in pain.) Yet, I don't see an option for fixing it, so...I will leave it and hope it can be deciphered where it was broken up? I think it will work out okay? Thanks so much for your help!

Thanks kmeb for you words of encouragement and important remnders! None of us wants to go through the ER...or through any of this...do we? I don't want to. Yet...!

Previously, they had not determined the exact cause. For awhile, they'd thought a porphyria was involved; yet, that was ruled out eventually. Then..they'd ruled out other causes.

They'd ended up diagnosing "an immune-mediated inflammatory process of the CNS and PNS" at that time.

I've since been diagnosed with antiphospholipid antibodies (Just 3 years ago.)

I have been disabled with CFS with abnormal brain scans for many years and then..had started obtaining a collection of autoimmune illnesses.

A also have a spndyloarthropy...just in the midst of determining whether ankylosing spondylitis or psoriatic (without skin manifestations). Also have asthma, hypothyrois, etc.

Have osteoarthritis, too, throughout. Yet, have kown large osteophyte in cervical region, at last MRI (3 years ago, "osteophyte" was not far from spinal cord.) (I currently suspect disc problem/other inflammatory problem in low spine..I think that has been the case for at least 2 years ow.. I have to constantly ice it.)

Yes, it would be nice if Neurology Clinics were not so overwhelmed and could be a little more helpful in being available to the person with any exacerbated neurological illness? I kow what so many people go through...all too often.

It's so difficult anyway..and then to have to keep pushing so hard to get any movement from the Neurology Clinic is... additionally disheartening, in my experience.

At the same time.. I must admit.. I am afraid of all of the available treatments. (I hate to admit that. Yet, it is true.)

Still waiting on Neurology. That may be the case for awhile..maybe even days.

Thanks again!

[Brian]

Hi DeJaVu and welcome to this forum, i agree fully with kmeb, i would not be waiting to hear from anyone, i would get myself to the hospital ASAP and get the medical attention you need now.
best of luck
Brian

[mrsD]

you seem very articulate about PN.

Since everyone is pointing to Depakote...I'll point some more====>
Depakote depletes l-carnitine from patients. Some people have died as a result.

Also given the increased interest in mito damage --triggers--and autism and possibly other neuro things, first off for you I'd get some L-carnitine or acetyl-l-carnitine and start with 1 or 2 grams a day.

You can have serum carnitine levels drawn as well, if you choose.
Depakote also messes up zinc metabolism. Lowered zinc can set off viruses into replication in the body. Fast progress implies perhaps a viral trigger for you.
Depakote also lowers folic acid. I'd supplement that as folinic acid...the activated form works better.
Depending on what other drugs you use, you may have addition problems with nutrient losses. If you post those I can look that up for you.
It would not hurt to try high dose CoQ-10 as well, since it also helps with mitochondria functions. As the research heats up in the autism world, I think we may see the overflow here. Perhaps mitochondrial malfunction is at the heart of some PN. I know it is for HIV and chemo patients. Their more dramatic reactions to their drug therapies may be a hint for many of us!

[DejaVu]

Dear Brian and mrsd,

Thank you for your responses!

I had written a detailed reply and have lost it somehow!
I have been juggling that with talking with the Neurology Clininc's nurse. She is now talking with the doctor.

I am keeping all advice in mind!

mrsd, I had written a detailed response and I have lost it. I will have to rewrite it. I thank you so much for all you have shared and will rewrite the post tonight if I am able to do so!

I must go, as my Dh just came home and I need to take a break from this position, too. I will hear from Neurologist and will repost in awhile!

My best to each and every!

Thanks again!

[LizaJane]

Deja Vu, your symptoms and course sound very familiar to me. I used to be on a forum with women who had silicone breast implants, and they developed connective tissue diseases which took many different forms, as yours does.

But I don't really understand your decision-making. It's so unusual for doctors to recommend plasmapheresis that I'd think they see a good chance of response to it, and a good chance of disabling illness without it. So if I were in your shoes, I know I'd get the procedure, happy to have bad antibodies removed from my system.

Antiphosphlipid syndrome can affect the cns and pns. I'm not sure labelling the spinal arthritis spondyloarthopathy adds anything (I've been told that, too, and it didn't change things, plus I think it was wrong), but knowing about the antibodies is awfully important.

I'm glad you have doctors who are willing to take you very seriously and be aggressive.

In terms of healing, there's a lot to be gained from all the advice here on supplements and nutrition. But anything which powers your mitochondria is important--they have to do a lot of work to regrow long axons. So, carnitine, in whatever form you choose, and CoQ10 can help; carnitine being the more important of the two.

Sorry you are going through so much.