Small Fiber Auto Neuropathy Plasmapheresis

[arizona girl]

Hope you all can help me with this one. Here's where I'm at right now:

After my positive TTT which showed syncope with standing hypertension and tachy, I was referred to a neurologist who then did a skin biopsy for small fiber neuropathy, plus a bunch of other tests to rule out many of the other causes noted on the dinet web site. The only test that came back abnormal was the skin biopsy pretty much confirming the small fiber diagnosis. I then went to see Dr. Grubb in toledo and he also agreed it was most likely autoimmune, even though they may not be able to identify an antibody yet. He also diagnosis hyperandregenic autonomic neuropathy and put me on labetalol an alpha/beta as I go up and down. He also requested a catecholomine test to see if they are jumping when I stand. I haven't done that one yet, but will. My neurologist first wanted to do IVIG. Insurance denied as experimental.

[arizona girl]

Asking again!

So to my question, my next option is the plasmapheresis. Has any one here had this done yet? I guess I wondering how many of you took testing further after your positive TTT? Has any one else had the skin biopsy? If you did have plasmapheresis what was your experience?

My insurance said I don't need prior approval, so now it's seems like this is a real option for me, so I guess I'm a bit scared to do it now that I can. What do you all think?

I guess I'm asking also unless you have EDS or some other diagnosed condition that is causing the pots, what other testing have you all done after your Tilt Table was positive, and/or are you just trying to treat symptoms vs the cause? Am I just a little bit further along in pursuing this then most of you and so there really isn't any advice or opinion? Most of the testing I've had done so far has been mentioned somewhere in the forum or in one of the other area's on dinet.

It could be informative to have a dialogue on this, as maybe more of us might be able to pursue further testing if they haven't already. If it turns out I'm venturing where no one has yet, then I sure would let you all know how it goes for me. If it works it might be another option for some of the rest of you. I'm sure ram and eric would love this topic. Where did they go!!

[Poohbear]

I've investigated it before after one Dr's suggestion but after consulting with some top autonomic specialist they were against it. If you have no trouble with tachycardia, blood pooling or hypovolemia then you might find you do okay with it....otherwise it's a great risk as you are pulling large volumes of blood out of the body. Even though it goes back in.....you first gotta pull it out and know that you would do ok with that type of volume shift.

Good luck to you whatever you decide.

[tinkerbella]

I had a muscle biospy and now they want to do another. I'll know more of what they want they want to do next week.

bellamia~

[futurehope]

I found the following on a NINDS(sp?) website when I googled: skin biopsy neuropathy

Inflammatory and autoimmune conditions leading to neuropathy can be controlled in several ways. Immunosuppressive drugs such as prednisone, cyclosporine, or azathioprine may be beneficial. Plasmapheresis-a procedure in which blood is removed, cleansed of immune system cells and antibodies, and then returned to the body-can limit inflammation or suppress immune system activity. High doses of immunoglobulins, proteins that function as antibodies, also can suppress abnormal immune system activity.

[tinkerbella]

I need to be cleansed right now!

bellamia~

[sugartwin]

I've had a ton of testing done, including holter monitor, full battery autonomic testing and hemodynamics. There might be a few other I'm forgetting. Based on the results, it's clear that I at one point had an autoimmune small fiber neuropathy but it isn't progressing and I suppose I'm just stuck waiting for the damage that was done to heal up. In my case, the cause of my POTS turned out to be EDS, aggravated by a small fiber neuropathy.

I'm sorry I can't offer you any advice on plasmapheresis. Personally, I was dead set on finding the cause of my POTS because it affected so severely that I couldn't go out in public without risking fainting or seizing (or both.) Fortunately I also live in Cleveland so I had the facilities with that kind of capability nearby.

Ideally, everyone would be able to get to the root cause of their POTS. I really think that it's more of a symptom than anything else, and going after a symptom without tracking down the cause is hit or miss.

[erik]

I know little of plasmapheresis. Just read a bit online and it seems a reasonable thing to consider for most any autoimmune condition (obviously since that's what it targets . Nice that it can potentially allow lesser dosage to whatever drug therapy one is on. I guess there are risks, like with anything. Some seem minor, a couple are more serious. Not sure how those weigh out. That's always the hard part, of course!

I've had little or no testing to determine POTS cause. None after diagnosis (pretty recent) and just a couple spot checks for obvious hormone imbalance (thyroid/adrenal) prior. Some day will get more detailed/costly stuff. So far, just trialing meds to see what seems to help symptomatically. If a progressive underlying cause is behind it, obviously I'd love to catch ASAP and I would likely take action even with some risk (my personal leaning, especially lacking family/dependents, etc.) Been pretty low functioning lately so I've had little to add on most topics and have not been able to read thru much information of late, or formulate anything useful in response.

[futurehope]

Sugartwin,

So, now that your search for a basis for your POTS is over, is your quality of life improved? Did the search results contribute towards the outcome?

[dsdmom]

I find it interesting that your doc is ready to do this. Not saying he's wrong - just that it's interesting! I've had a biopsy and other tests also show small fiber neuropathy but I've been to 2 autonomic specialists and neither is really on board with ivig. I think they feel the same way about plasmapheresis.

Of course if something helps, I want to do it! So if you do have luck with it, it may be something I push for further discussion on.

Good luck!

[sugartwin]

futurehope,

I'd say yes, even though knowing what is making me sick isn''t the same as 'getting well.' EDS has no cure, but when I found out I had it, I was finally able to get effective pain relief and physical therapy. Before I was just having POTS+severe pain, and no one was really willing to treat the pain. Those that did assumed it was neuropathic pain, which it wasn't. When I discovered EDS I was able to get that pain treated and find effective ways to reduce it (like not sleeping with my knees hyperextended.) I was damaging my joints without realizing it because thinking I was 'normal' I assumed everyone had the same range of motion that I did.

On the POTS side of things, I discovered that since I had small fiber neuropathy, drugs that treat that tend to take care of a whole swath of symptoms at once, like my light and noise sensitivity, gastroparesis and the violent swings in my blood pressure. Instead of trying to go after each symptom individually, I can get several with a single medication.

Sugartwin,

So, now that your search for a basis for your POTS is over, is your quality of life improved? Did the search results contribute towards the outcome?

[janelle]

Hi, Im new to the forum this is my first time replying so i hope i get it right. I couldn't help but notice the discussion on ivig therapy,

I have just completed my second course of ivig today, it dosn't seem to be helping me at all and i'm worried what will happen next, i have Pandysautonomia. Has anyone else had ivig or pandysautonomia?

[arizona girl]

Hi guys, sorry I didn't respond sooner. Was sidetracked by abnormal mamo, microcalcifications were found and I have to have a biopsy on tuesday of my right breast, should know results by next friday. I needed another problem like a hole in my head. I'm sure they will just turn out to be calcium. No way to tell for sure without taking a closer look. Ahhhhhh!

Anyway thanks for all your replies and thoughts. It looks like my doctor is giving me a treatment choice that is just a bit more then treating symptoms, which he is ready to do as well. His practice does a lot of neuropathy research and also does IVIG infusions as well. The truth is they have really only been able to test for small fiber with a skin biopsy for about 10 years. So now that they can prove it, I guess the way to treat it is still new too. It seems he is applying the treatment plan that he uses with other forms to treat me too. If it works I'm sure it will further support the research and become a standard treatment option some day. My cardio and primary agree. So as soon as I know that biopsy results are negative I'm going to schedule it. I'll let you all know how it goes, if it works it may be an option for some of you as well. I do think that some of you here that haven't been told it's secondary do to another condition should consider getting a skin biopsy to rule in/out small fiber. Once you know something your treatment choices do change some.

Pooh, what type of doctors were your autonomic specialists? I've seen a neurologist and two cardio's, one of which is Dr. Grubb. I asked him about the IVIG and he said it is an option, he just didn't like that the infusion is made from many donors. You make a good point about the blood volume. I have never been tested for that, I'm assuming I pool in the lower body, but don't know where. I'm one of the few where my BP/HR go up probably due to the adrenaline surge. I tried to ask the med assistant and she didn't know, I think I should ask the people that do the procedure, they will probably know better. I do know that this is a treatment that is used for many forms of neuropathy and I do have small fiber neuropathy.

Oh Bella, those muscle biopsy's are suppose to be so painful. Please let me know what you find out. Do you know what they were looking for?

Sugartwin, I so agree with you about finding out if at all possible the reason for the symptoms and that pots symptoms are symptoms of something else. As soon as that TTT was positive it opened new doors for testing, as it wasn't "well honey you just have anxiety or fibromyalgia" The thing is now I'm at the, well what is causing the small fiber which is causing the pots symptoms, many things can cause it too. I'm sorry it turned out to be EDS that is a tough one to live with.

You said that your treatments have really helped out with the pain in stuff. If the plasmapheresis doesn't work that is where I will be treating symptoms. I have the same ones that you have, so what are you taking to treat them?

Erik I'm so sorry that your in a bad spell again. Every now and then I get this awful feeling like I'm trapped in side my body and I can't get away, it passes, but it is a bit scary when I'm having a bad spell. I hope treating the symptoms is helping you, if you seem worse though since being on them, give the meds a second look. Inderal was suppose to help me and it made me so much worse, and the fatigue from it made me zombie like. That went away with in a month after going off it. When you get your next good spell and if you have the funds to pursue further testing I encourage you to do it. But, I know that feeling about having to drag yourself to yet another test or doctor. Sometimes you just need a vacation from it. I hope you feel better soon, you do add so much intelligent discussion to the board.

Futurehope/b] Thanks for the info. I too found something similar when googling. So I guess it is a treatment choice. I was just hoping some others here on the board had some first hand experenice with it. You, the forum, and dinet have been such a useful resource. If it hadn't been for dinet I wouldn't have even known what tests to push for. So, I guess I'm surprised that more of us haven't taking testing further, when dinet has provided us with such great resources. It seems many of us just treat symptoms vs. the cause.

Dsdmom, So there are two of you that responded to this post that have said the same thing about your autonomic specialists not treating this way. I ask you too, what type of doctors were they and why do you think they were resistant to this treatment choice?

Pandy I see you did a separate post. I'll respond there.

Thanks again all of you, of course if anyone, that hasn't responded yet has anything add, I'm all eyes, get it cause I can read what you have to say but I can't hear you!

[sugartwin]

arizona girl, Sorry for the late reply! Even though I was sad to learn it was EDS, I'm happy because it means I don't have to hear how I'm just "stressed" or that my pain is imaginary or that I'm drug-seeking. For the most part, anyhow.

In any case, I take Lyrica for my neuropathy, 450mg in three divided doses. Before I even knew what was wrong with me, this medicine gave me a good percentage of my functioning back.

Interestingly, when I was in the hospital recently (for dehydration and hypokalemia secondary to gastroparesis) IVIG was one of the treatments mentioned, but I guess they decided not to go ahead with it.

[Notgivinup]

When I had my second TTT at Cleveland clinic, they also tested me for small fiber neuropathy. I have three tiny little scars on my legs to prove it.

The test came back positive. However no one ever discussed any form of treatment for me/it. I don't know if it was because it wasn't that bad or what, but at the time I was confused and very symptomatic, all I wanted was for my symptoms to go away. I knew almost nothing about POTS back then.

Since then none of the doctors I've seen ever mention anything about it, even when they see what tests I've had. Maybe it's time I research a little bit about it. I don't seem to have any symptoms. No burning or tingling.

I'm not even sure if I'm talking about the same thing you are. Hmmm, off to do some reading.