[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

[Alffe]

Hi DejaVu and welcome to Neuro Talk. Here is the link to our PN forum..http://neurotalk.psychcentral.com/forum20.html

These forums are great for finding support and making friends. I'm so glad you have joined us.

[Chemar]

hi
I copied your intro post over to PN forum for you and merged it with the other post there so you will have it all together.

welcome

[DM]

Hello DejaVue and Welcome to NeuroTalk. *love your user name*

Thanks for the great intro and don't ever worry about the door here at NT not being open. Doc John has provided a place for you, me and all the other great members to come to for info, advice, laughter and of course, venting, when we feel the need. So, please make yourself at home and glad you found us.

[Darlene]

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

[AfterMyNap]

Hi DejaVu! Welcome to NeuroTalk!

[dorrie]

Hi Dejavu! Welcome to Neurotalk!

[DejaVu]

Hi Allfe, Chemar, daisymay, Darlene, Cindy and dorrie!

Thank you so much for your kind welcomes!

I have been a bit dazed since my more recent neuropathy exacerbations and feel very cognitively "cloudy."

I can see I has, somehow "disorganized" my post? (Ooops!) Yet, I guess the pertinent information is there!

I am not usually so cognitively cloudy; this happens with exacerbations. I am sure you all understand...have been there, done that!

Please forgive me, as I did not realize this thread was here and at the PN forum.

My failure to respond to your very warm welcoming posts was not intentional!
I'd just realized this post was here, too!

Thank you so very much for you welcoming messages!
I deeply appreciate them...and each of you!