Glad to Find This Forum!
 

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.:eek:

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.:eek:
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!:D

I was sooo happy!:D
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.:(:confused::eek:

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!:grouphug:

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!:confused: I have deteriorated within the past two weeks!:confused:

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!?:grouphug:



This

New Here
 

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.):confused:

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!":eek: Hard hitting and rapid advancement. :eek: 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.:eek: 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.:confused:

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.:confused:

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!:D

Hope for all!:grouphug:

DejaVu

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

DeJaVu
 

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...

Thaks!
 

Hi!

Thanks Cheri for moving and merging!:D

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!:D

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...!:confused:

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. :eek: (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!:D

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 :)

Welcome...
 

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!

THanks so much!
 

Dear Brian and mrsd,

Thank you for your responses!:)

I had written a detailed reply and have lost it somehow!:confused:
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!:winky:

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!:)

familiar
 

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.

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 :)

Hello to All!

Thank you, Liza Jane and Monica de Lara for your responses and your warm welcomes.

Monica, I am glad you are in a "stable" place with neuropathy.:)
I so deeply hope this remains stable for you...forever.:)

Liza Jane, Thanks for you extra input. I do appreciate it.
The plasmapheresis "offer" was approximately 8 years ago now.
The doctors involved had "stepped in " on my case, although they were to be in the area for only a year or two. They had worked me up for may different types of illnesses and had "diagnosed" two different illnesses, givng me tons of documents on each and telling me to tell my other docs that each of these diagnoses were correct and were finalized.

The first was a porphyria. They had called my primary care and had said "definite diagnosis" and had placed a note in my chart, stating to treat me for porhyria if I'd had a relapse/exacerbation, etc. Also had noted to treat me immediately with...I forget the name of the substance right now...IV substance. I was given lots of information on this and had the labs re-checked, etc. There was no conclusive evidence of this. Two consults (from two different neurology centers) had "tossed" this diagnosis.

Next, they had decided I'd had Fabry's. I did not have Fabry's. Yet, they had put that through my chart(s) and had called around to my docs to confirm that, as well. Two consults had also given an opinion of no Fabry's.

Then, they'd apologized and... had told me I needed plasmapheresis immediately. This was after they had done two skin biopsies and a sural nerve biopsy. They'd told me the sural nerve biopsy was abnormal. The skin biopsies were abnormal. When asking for the pathology report for the sural nerve biopsy, the report had read no abnormalities noted. So while the skin biopsies were abnormal, the sural nerve biopsy was not. They'd continued adamant it was abnormal. The pathologist had responded that he had never written a report of abnormality on the sural nerve biopsy.

I had allowed the testing because it had involved a good pathologist and a good neurosurgeon, not these two "questionable characters." I had figured I could take good testing results anywhere.

Again, I'd asked for all lab results and testing results so I could go for the second opinions on the plasmapheresis they'd told me was life or death...no time to waste. I'd also told them that if I'd needed plasmapheresis, I'd prefer to have that done in a medical center that does it a lot and there is one or two that do this much more frequently than the hospital I am near now...all within 250-300 miles. (The docs had admitted plasmapheresis was done maybe 3 times a year at this local teaching hospital.)

The neuro docs here went haywire. They did not want me to get another opinion. They did not want me to have plasmapheresis done elsewhere, although that was in my best interest...to have it done in a place where it is more routinely done. The "resident" finally took me aside and told me they wanted me to have the plasmapheresis done here because they'd wanted the all they'd filtered out captured here for their lab and for their research.

I had made appointments for consults and the biopsies/ records kept being obstructed. My primary care physician had become involved because one neuro was actually keeping biopsie (skin) the report on pathology to himself. He would not place then in the chart and kept saying he would do do, once he 'd retrieve then from his lab. This went on and on. Then..the hospital became involved and the guy had taken off with some biopsies. He was chased down...says he does not have them. However, the biopsies had disappeared with the doctor. The resident had admitted to the fact that the doctor he was working under was trying to do research on me without my knowledge/consent.:eek:

The "kicker" was when the resident had told my mother, at church one Sunday, to please tell me not to worry about their pressure for me to have plasmapheresis because they had found another patient who would do this with them.?????:eek: That was before the reports had started to be withheld/disappearing, biopsies disappearing/misplaced, etc.

(If a patient needs a heart procedure, a doctor does not tell a patient s/he does not need one now that they have someone else agreeing to the procedure.:eek:)

Something was very wrong about their "offer" to do plasmapheresis.
Now, if another neurology center had the information in order to confirm this was definitely the thing to do, I would have had to have more strongly considered it.

That was a nightmare of an experience, as I do not think these guys had my best interests in mind.

If I were to ever need plasmapheresis , and I could make the trip, I would choose to have this done at a center approximately 250 miles away. they are very experiencd with this procedure.

I was never able to give all of the "evidence" to other neurologists for a second opinion on the plasmapheresis. We could never gather all of the information. We could recover the pathology reports; yet, some of the skin biopsies had never made it to pathology! (I was never a knowing/consenting participant in any research with these doctors. I have participated in research before, at another facility and I k now what the paperwork looks like for agreeing to participate in research.)

I was never fully informed of all of the possible adverse reactions from a sural nerve biopsy. Never. I was "very green" in this field..I did not know much about it and was beginning to learn. (I was also very ill and trying to make decisions; yet, was also being a bit "used" by these two docs, according to other doctors.) I'd had severe nerve burning in my foot...1000x worse than ever before, for over 4 years, from the sural nerve biopsy. This area still becomes "flared" along with any other flaring and is much worse than it ever was before the biopsy.:eek:

My neurologist came back from leave and these two disappeared. I'd filled him in and he was quite surprised and also upset with all that had happened.
He continues to be my neurologist now. (He has been my neurologist for over 16 years; he was away when these other tow had taken on my case.)

While I "think" most neurologists are trustworthy, always be careful.:)

I am sure other here can share some really good guidelines for making treatment decisions. Due to the level of illness I am feeling at this time, I am a bit scattered. I am sorry.:(

Thank you for your responses!:)

I will write an update next, if I am able to do so. I need to take a break.:(

mrsd, I also have some responses for you.
Please do not interpret my delayed responses as disinterest and/or not extremely appreciative.:)

I am very appreciative of all.:)

Many, many blessings to all!:)

Update and some responses for mrsd and others
 

A Warm Hello to All!:)

Again, I'd like to express my appreciation for all of the warm welcomes, the inquiries, the information shared, etc. I am looking forward to spending time on learning some new information and also in refreshing my memory on other information!

This is quite a site, all put together and held together by a lot of "teamwork" it seems. This makes for a very strong site.

It's extremely heartening to me to be blessed with access to this group.
I only hope I can contribute, in return, in a meaningful way... someday.:grouphug:

Update re: yesterday and Conversations with Neurology

I had decided to write a little update, as many were very helpful with input yesterday, while I was trying to gain some direction from my neuro's office.

His nurse and I had been in touch, three different times since last night.
BY this a.m., it was more clear that I am also dealing with a virus of some sort. This is exacerbating the exacerbation.

They'd told me they want me to remain at home, trying to recover from the virus. They had told me I can increase pain meds, if needed. They'd additionally told me to use a cane at home, if I need help with walking. Once I am well enough to leave home, to use a wheelchair, if I need to, for longer walking tasks (for instance, if I were to go out to the mall or out for something else and the walk is too much).

They will also approve any other method I might need for ambulatory help.(A generlize blanket statement, not sue the nurse can deliver on that one! Lol!) (???) This is okay, I guess; yet, I want them to realize that I have never had to use a wheelchair before and would really like to know what is behind maybe needing one this time?:confused:

They'd said they don't want me "falling.":thud: I haven't had a history of falling? Standard warning for bilateral leg weakness, I guess.

(Additionally, I don't have a wheelchair..so I guess I think about a rental until we know what's going on?)

They had instructed me to cancel my evoked potentials scheduled for tomorrow, as I am too ill right now. They have rescheduled them for May 2nd! (that is the next available appt. for that test.) I canonot get EMG until May 23. They had added the neurologist cannot see me again until June 10th anyway.

I am supposed to keep a close eye on all of this...the symptoms, weakness, etc. If I have any further major changes, I am to call again right away. (I'd just done that.)

This system is so overwhelmed!:Speechless:
I think most are?

I do not have it in me to "fight" with them. I am far too tired and in too much pain. I am more comfortable with my breathing today, for which I am thankful.:)

I will keep a very close eye on things and will not hesitate to call an ambulance, go to the ER with family, whatever needs to be done... in whatever manner it needs to be done...whenever it needs to be done.:Demonstration:

It seems absurd that everyone (or likely the majority) have to wait this long to get some help from the actual doctors? The tests we are waiting on are not anything super extraordinary.

I cannot have my labs ? I was told I cannnot know my labwork results until I see the doctor. The things like the serum and urine immunofixation, etc.??? I get to know these in June? (Seems odd.)

I'd had my first appt. with the neurologist for this episode on March 18th. (After an argument from my primary care's office, as neurology's office had wanted the initial appointment to occur in June! Lol!) Although I now do not have my initial appt. in June and will be meeting with some test results in June, it is still disheartening; yet, I know I am not alone in dealing with this.

It's just that all of my other docs are holding out to see what neurology has to say. (My rheumatologist, my primary care, physical therapy efforts, etc.)

I guess, on one hand, I can count myself pretty lucky that I can see a neurologist and I can have the testing, etc. It just gets so frustrating...especially when everyone is deferring to one specialist and...everything is on hold.

So..we will see what happens over the next few days.
(I do know that the infection rate of MRSE and VRE, and maybe some other things are high right now in this area. I am not sure I have used the exaclty correct acronyms for those. I am having trouble thinking, due to the level of fatigue, etc. My docs are always very cognizant of these types of infections in the hospital and constantly tell me to stay away from the hospital in order to stay as well as possible.)

[B]mrsd[/B], thank you for all of the information you have shared! It is very important information and I am grateful you had taken the time to share so much!

I have acetyl-l-carnitine, CoQ10, methycoalamin 1000mcg., OptiZinc (monomethionate15 mg.), N-acetyl-L-Cysteine, Alpha Lipoic Acid and "Advanced Ferrochel" (ferrous bis-gylcinate chelate 27 mg.) in the house, along with other vites and supplements.

I had recalled some of the nutrients I had used before, yet I could not recall the amounts. I need to look for my books by John Senneff. I had used those before and actually did quite well. Maybe there is updated information elsewhere on the supplements and the dosages to take?

I had read some of Roses' website today because my recent B12 was 415. My recent ferritin was only 20. (Nice site, Rose!):)

My doc had called 415 normal. He had advised me to take ferrous sulfate twice daily for 30 days to bring up ferritin level. Yet, I had found the "Advanced Ferrochel, " which is supposed to be much more bioavailable and more gentle on the stomach. (Source Naturals).

I need to get my comprehensive plan together and stick with it, in hopes of healing nerves again!:) I have forgotten lost of info, so I will have lots of studying to do again!:D

Thank you for all you have shared.:D

mrsd, You have been an angel to many for many years. :D I do recall reading some of your posts when you were on the original braintalk forum as MrsDoubtfyre...wasn't that the spelling? (I am trying to recall.)
I had never belonged ot the forums, yet, I had read them now and then!
(Didn't you also design a logo or something for them? Or do I have you confused with someone else?) I do know you have been a tremendous help to so many for so very long! You have a heart of gold!:hug:

Thanks again to all!:You-Rock:

I hope everyne get a good night of peaceful rest.:)

Wow!
 

Deja--That is one of the most incredible and upsetting stories we've heard here, and there are lots of doozies, let me tell you. Wanting to do plasmapheresis because he was doing a study and keeping your slides. I'm speechless.

Except for this: I put up a site where one can make spreadsheets of all the tests you've had: http://www.lizajane.org

I have a feeling you've had lots of tests listed, and can fill out these charts. Once you do, it's way easier for doctors to get a sense of where you're at, and for you to pick up errors and missed abnormalities.

The sheets will open in Excel, and you can save them or hit the download button and download. You can then change the way they look, or what they follow.

Just to see a sample, here's a link to mine. Before you get totally intimidated by it, just know that I've been making doctors give me my lab results for years, and charting them for about 5 years now. There are 6 pages here: if you do look, please click at the bottom to see the different pages. You'll see that I have sheets for autoimmune tests for neuropathy, B12, gluten-intolerance, as well as porphyria and more ordinary problems such as diabetes. My doctors love that I bring them these sheets. Each visit they can throw out the old and put in the new.

http://www.lizajane.org/PN/Users/liz...Feb 8 2008.xls

But you know, it does sound like you have an immune neuropathy which can produce rapid changes in function and pain. Most immune neuropathies are treated with IVIG; some with plasmapheresis. I'm sure you'll find many people here, and on the CIDP board with experience in these areas.

Thank you for your kindness!
 

Dear Liza Jane,

Thank you so very much for your responses!:D

Thanks, too, for sharing your spread sheet!:D
You were so right, I would have felt very intimidated by it if I had not seen yours first! :eek:
Actually, I still feel a bit intimidated by it!:eek:

What a great idea though!:Girl(angel-flying):
How generous of you to share your "work of art!":grouphug:

I will have to get the information together and try to organize it all this well!:)

I appreciate your comments...very much!:)

I am really feeling "lost" in all of this right now..for some reason.
I'd hated having PN so much and once I'd had a reprieve, I must have "dumped all of the info. in my head!" That may be a good thing, if it was information now outdated and/or was erroneous to begin with!:confused:

I think some of the "lack of recall" is a side-effect of the current neuro process (exacerbation) and I also think it's also partially an "emotional block." I was so incensed by all that had gone on before, as if the PN itself was not enough pain... without the "unethical" docs involved.

I really appreciate something you had written in a different thread...about self-advocacy. While seeking justice and all is very important, there have been times when I was far too ill to pursue it all!:(

It was very disheartening to realize that many other docs knew about all that had gone on and had advised me to "report," etc. Not a single one of them had an ethical responsibility to report... even knowing how ill I was at the time...and even while coaching me to "report" and file suit! (Some of them had spoken with the neurologist involved and knew first hand exactly what was going on and had told me so.)

It is very important to be able to do this...self-advocacy!:) Yet, sometimes, it is realy too much for someone acutely ill/impaired. I am not one to "back down" on finding justice and on pushing "ethics." Anyone knowing me would tell you if I can walk, talk, think, I would be kicking some butt on things like this; yet, the neuro docs involved knew I was too ill to nail them as well as I would have been able to when not so profoundly affected by illness at the time. I am also "the one" in my family ...even my extended family to hold someone accountable. (I have one sister likely to do this, too; yet, she now lives a few states away from me. Others in my family...just don't have it in them...even when well.)

I appreciate your acknowledgement that although we all need to be prepared for a great deal of self-advocacy, there are times when we are very ill...too ill to perform in this arena as well as we otherwise would!:)

I hope all are having a comfortable, and even enjoyable , weekend!:)