[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!