[DejaVu]

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.

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.????? 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.)

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.

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!

[DejaVu]

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.

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?

They'd said they don't want me "falling." 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!
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.

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!

Thank you for all you have shared.

mrsd, You have been an angel to many for many years. 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!

Thanks again to all!

I hope everyne get a good night of peaceful rest.

[LizaJane]

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.

[DejaVu]

Dear Liza Jane,

Thank you so very much for your responses!

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

What a great idea though!
How generous of you to share your "work of art!"

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!

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!