[DejaVu]

Hi!

I have been looking all over for an appropriate forum for dealing with/learning more about my various neurological "conditions."

I have a few autoimmune conditions and a few that also get into neurological issues/diagnoses, etc. I feel way too overwhelmed today to name them all.

Most recently, I have had a re-activation of neuropathy. The exacerbation had happened very quickly and has been quite intense. (This appears to be motor, sensory and we are wondering about autonomic...we are just starting all of the new work-ups.)

I have never had neuropathy hit me (exacerbate) this quickly.
I have had fairly advanced neuroptahy before... with docs recommending plasmapheresis treatment, etc. Yet, I had eventually "healed" much of this...with time and nutrients as outlined in J. Senneff's Books, etc.

Neuropathy was rather severe at that time. We'd done skin punch biopsiies and a sural nerve biopsy, etc., etc. The docs told me I might not be able to walk in less than a year, etc. The entire experience was miserable. I was in so much pain, etc. You all know the drill! That was 8 years ago now.

(I did not do the plasmapheresis and I guess I was lucky I had healed at that time. I am not recommending others do not follow their physician's advice. This was just my personal decision at the time.)

Three years ago, I was evaluated for neuropathy and there were no signs (nor symptoms) of this at all!

I was sooo happy!
I have many of other conditions to deal with, which cross-over between autoimmune and rheumatologiacl/neurological. (Glad that one was "at rest!")

I realize, especially after reading some ...before posting..that many here have it worse thatn I do. I feel a bit like a "whiner" right now. (Whichi is not my "noprm." Yet, I have had so many years of this and have been so impaired by the pain and the weakness...yet again...I am a bit 'frustrated, sad and frightened," to be honest.

Oh...let's see...female...and "over 30." (LOL!) Married.
I'm sure I will share more..with time. I cannot write a lot more today. I am trying to use that "jammed up" left hand!

Thanks for being here! Just need a shoulder today, I guess..from those understanding first-hand. (Many people have no idea of what this pain is like until/unless they have experienced it. Neither do they know what it is like to suddenly loose function of limbs/systems... unless they have been through it. It feel better today, k nowing I might actually touch bases with someone else kowing what it can be like.)

Glad to meet you all! Sorry to meet you this way.

Thanks for letting me in the door!

With Hope for All,
DejaVu



In February of this year, I was suddenly "hit hard" with something that had attacked my nervous system. I'd started some form of a movement disorder first...it seemed to be an actual "akathisia" rather than restless legs. All docs had agreed with it most likley an akathisia. this was "overwhelming!" It was severe.

Then..I'd started to have the burning, swelling, severe pain, tingling of PN in my legs. This had happened so quickly... it was up to my knees (both legs) within three days. WIthin another 4 days, I'd started with this in my hands, which then travelled upward through my arms. (This neuropathy attack was ascribed to a reaction set off by Depakote (by all doctors involved). Some people have a sensitivity reaction to certain meds. Depakote can cause such reactions, along with other meds. Depakote can also cause a med-induced lupus reaction.

I'd had severe left hand impairments just two weeks ago, when I'd finally seen the neurologist. (This left hand extreme weakeness (unable to use) and all of the other symptoms mentioned.) Tests were ordered.

Although tests were ordered two weeks ago, none have yet been scheduled. (They system is overwhelmed!) The neurologist wanted to see me as soon as testing was completed.

Yet, testing is not being scheduled yet...and I am getting more and more intense symptoms.

I had started overly intense weakness in both legs over this past weekend. It has been 3-4 days of that! I can barely walk when I get up, etc. I do regain some sensation and some strength when I ice my low back for a few hours! (I have been asking for a scan on my low back for over 2 years! I ahve even been demanding it...the answer has been no...despite my getting tough about it.)

I do not live in an area where people can simply "dump docs." I do live near a teaching medical school/hospital. Some of my docs are very good (and are also researchers). I have the neurologist considered the best in this area and also listed as a neuropathy specialist. (He is not the doc denying the spine scan.)

There are not enough docs in the area to just change them.. it is a matter of "working with them," if at all possible.

My neurologist knows me and my "case" from long ago.

I am beside myself today. I don't usually get down and out. It's not my most frequent state of mind.

Yet, my Primary Care Doc had to "fight" with scheduling at the Neurology Clinic to get me in to see my Neurologist in a timely fasshion (otherwise, it was going to be 6 mos.). I did get an appt and now the testing is not being done on a timely schedule. I feel I am deteriorating rapidly this time.

I have deteriorated very rapidly just within the past month! I have deteriorated within the past two weeks!

The docs had thought this process would stop the longer I was away from/off of the Depakote. I have been off of the Depakote for over one month now (and was only on it for two weeks!)

The last time I'd developed neuropathy..it did not happen this quickly and...this is very frightening, excruciatingly painful and...frustrating in trying to get some help!

I have called the Neuro's again today...because I don't want this to continue to progress so quickly if I can help it!

I have never felt like I need a wheelchair as much as I have just over the past two-three days!

(I realize I may/may not get a phone call returned. Unless things have changed drastically, the phone tag goes on forever. I hope and pray things have changed!)

And then...we all know..there are no super good options for stopping neuropathy in a hurry! I mean...we all need better options, don't we!?



This

[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.

[Monica de Lara]

Hi Deja Vu.

Welcome here!!!

I also have neuropathy due to autoimmune causes. I have received steroids and IVIG. I am stable now fortunately, but i understand your situation and i am sorry you are going through it.

People are very kind and caring here. I have learned a lot here. Just wanted to say Welcome