Your Plasmapheresis Test Dummy Has Her Results

[arizona girl]

Well, first I did do the supine/standing cathecolamine test and do have some questions, I'll do a second post on that.

Geez, what a long winded diagnosis name.

After the neurologist and Dr. Gubb came to this diagnosis, neuro suggested IVIG, ins turned down as experimental, his next option was plasmapheresis w/albumin replacement. The worst part of the treatment was the surgical implantation of a tunneled catheter into my right juglar. They must have put my neck out and it was the worst most painful neck and shoulder muscle spasm everrrr! Four days after relaxers and pain killers it calm down about a week/half total of pain.

The Treatments

The first treatment I did have a sudden hypotensive episode and almost passed out lying down. They pushed fluids and I rebounded. Was sick though for the next few days, like what happened after the TTT. After the first plasma though, I never had a problem again during treatment. It was very easy, you just lay there don't feel much of anything, lasts 1-2 hours. Some days I was tired afterwards.

After the 3rd treatment the pain in my hands subsided. I didn't realize how much they hurt until they stopped hurting. The week of the 4th and 5th treatment I had changes in my blood pressure. Woke up hypotensive and dizzy a few days (not the norm for me I usually go up) I don't know how to describe it, maybe like what happens to rama I had this strange pressure in my head and my carotids felt like the size of garden hoses, pushing up, that couldn't get the water out. I also started having irregular heart beat symbols on my BP cuff. Tachy was more obvious. Went and saw my cardio she ran ecg, it was borderline as usual however I was having S waves instead of T waves I usually get. She wasn't concerned as it was borderline and the nature of the treatment.

After the 6th treatment I stopped having really high standing blood pressure. It usually would get up to the 150-170/100-120 range. Stayed lower then 130/90s, until the day before the next treatments when I started creeping up to 140/90s. Except for a few sudden spikes when talking, I maintained these numbers through the rest of the treatments 10 total. It also seemed like my BP/HR weren't dropping as low when I was sleeping. I use to have pretty wide swings supine/standing. Those are closer together now. Heart rate however has been higher standing and I can feel the tachy more now that the BP is lower, but my baseline HR is higher then it was, so that might explain the higher tachy. It's wierd when both were high together I didn't always feel the tachy, but then I had no idea that I had tachy until one doc had me start doing the poor man's tilt at home. When I saw what the readings were I was like whoa no wonder I feel tired when I stand up.

The other changes I noticed was that I was able to finally get a deeper more refreshing breath, my finger nails are growing, my skin color and texture look better, gut was eliminating more, but still had lots of bloating, I have lots of painful lumpy/fibery tissues under my skin most noticable in the arms, legs and hips. They seemed to decrease in size and where much less painful. I still didn't feel good when standing, it kind of felt like I had made a dent in the right direction though, but it would take much more to turn it around.

I stopped the treatments and was off for a total of 8 days waiting to see the neuro. Five days after my last treatment everything flared again, BP up, pain up, swelling in hands and feet, etc. I realized then that my pain levels had slowly dropped and then came back with a vengance. I now know how much pain I had been living with and had just gotten use to. Oh I didn't take any BP meds at all and after the spam subsided I only took advil and darvocet a few times, much less then usual.

Last thursday, saw the neuro, he said that the types of changes confirmed to him that my neuropathy was indeed autoimmune in nature. I asked can you have a rebound after stopping the plasma? He said yes, I said that fast, he said yes again. He then said that as I couldn't stay on the plasma long term, that he wanted to put me on "Cellcept" a anti-rejection drug that dampens the immune system. He said it takes 3-6 months to start working and gave me 6 more weeks of the plasmapheresis.

So did I start moving in the right direction, yes. Don't know if it would have helped if autoimmunity wasn't suspected. Did I have a set back when I stopped, yes.

So my question to you all now is do any of you know anything about Cellcept? I do have concerns that because it weakens the immune system to stop you from attacking yourself, that I could get sick from something else. I have had a positive TB skin test, no active disease, and have also had positive titers for cytomegalo and the HHV6 herpes viruses. I don't know if those are just exposures or if they are lying dormant in my body some where

Please feel free to opine, pick away, or ask questions. Any input from the wise ones on the forum are welcome.

[ramakentesh]

Hi

What were your actual results originally? WHy did they suspect autoimmune neuropathy? What were your symptoms?

Most people test positive to some latent viruses. Unless you tested positive to TB I dont think that medication to supress your immune system will cause too many probems - millions of people take medication for this already in RA, Lupus, AS., Crohns, etc.

[arizona girl]

Hey Rama, I was hoping you were around tonight. I read your post earlier today about aks/pots. Glad to see there is some one else on the forum in the same shoes as you. It's nice when that happens and you can compare notes.

Which results that catechcolaimines?

Don't know if you read my posts in the beginning, but after my TTT was positive, I went back to the first neuro who said there was no one in AZ to treat pots, he made some comment in my records about anxiety. To prove him wrong I gave him my TTT results, he had me come in for an emg which was normal. It would have ended there if I hadn't ask about small fiber, which I read about here on the forum. He then referred me to another neuro at phoenix neurological associates, (they have a web page and talk about their research on it). They actually do the skin biopsy and do the diagnostics. That skin biopsy showed lower then normal small fiber density. The neuro also did a bunch of other tests to try and see if it was amyloid, carcinoid, bunch of other stuff, posted here a while back. All that came back normal. So, when they can't find some other cause, he diagnosed idiopathic small fiber, which means that don't know the cause but suspect an as yet unidentified antibody to the small fiber nerves. The symptoms for small fiber are peripheral neuropathy and autonomic neuropathy, I have symptoms of both, but the autonomic is worse. Dr grubb defined the hyperandrengic response, which is now confirmed as my norepi almost tripled on standing, explains the standing tachy/hypertension. Grubb when I saw him agreed with the autoimmune small fiber the neuro's labs showed and even acknowledged the IVIG treatment as a possibility.

So the plasmapheresis was a test as well as a treatment, if I responded to it, which I did it proves unidentified autoimmunity. I guess there are a lot of neuropathies that are autoimmune, like polyneuropathy, guillian barr. I need to ask him more questions, but I'm guessing from his experience he is treating me the same as he would if I had one of the other neuropathies. The skin biopsy hasn't been around long yet, so all treatments for it are really off label or experimental so far, no standardized treatment yet. I sort of think I may be a test dummy. Also when I first got sick forever ago, I did have a positive ANA for many years. First they though it was mixed connective tissue, treated didn't get better, meds made me worse, then fibromyalgia, didn't get better, then when I lost a baby, found PCOS and was treated for metabolic syndrome due to the very high insulin. Glucophage helped with that. All that stuff though never explained the autonomic stuff and the near faints. I did have an adrenal nodule, I thought might be the cause and when researching that I found dinet and saw that I had so many symptoms of pots. After reading here under mechs/causes I suspected the small fiber.

Well I did have a positive TB skin test, my chest x-ray was negative, did take preventative INH for 3 months until abnormal liver tests stopped the treatment. So, you don't think the other viruses are much to worry about? Do you think you AKS is autoimmune? If I did have just a positive skin test, do you think TB could be an issue? By the way on that catecholamine test it also said I my dopamine was below the range of this test supine/standing both. My epi was about 40 points high supine and didn't change on standing. Do you know anything about those numbers?

Hi

What were your actual results originally? WHy did they suspect autoimmune neuropathy? What were your symptoms?

Most people test positive to some latent viruses. Unless you tested positive to TB I dont think that medication to supress your immune system will cause too many probems - millions of people take medication for this already in RA, Lupus, AS., Crohns, etc.

[ramakentesh]

Interesting. So when you say that you have symptoms of neuropathy do you mean tingling etc?

Aloso do your POTS symptoms wax and wane and do you have any unusual POTS symptoms? Visual snow, etc.

[arizona girl]

Oh I see where your going, I thought you already knew this, sorry! The large fiber nerves control mostly motor nerves that allow you to walk and move. The small fiber nerves are found in your arms and legs and are found in all organs and tissues that control your autonomic functions. Like breathing, sweating, vessel constriction, HR/BP, ability to produce moisture in the eyes, nose, etc, body temperature, gut motility, basically all those functions that our body does autonomically that we should be unaware of. In the legs and arms it is only it is referred to as peripheral neuropathy. Those symptoms there can be burning, pain, numbness in the stocking/glove pattern, but when your autonomic nerves are failing it can also cause your vessels to not constrict causing blood pooling.

In my case I also have a hyperandregenic response to the blood pooling in a back up attempt to get the blood/oxygen to the brain. I think if you don't have that back up response you probably go hypotensive right away. So, while I do have symptoms of pins and needle pain/hot or buzzing or burning in the stocking glove area those symptoms are less severe then how my autonomic functions have been impacted. None of them work right in me, I have dry eyes, etc. I get fevers from talking and get overheated or chilled easily, slow gut motility, brain fog, was unable to get a deep breath, don't sweat, except nite sweats on/off for last 20 years, orthostatic hypertension and tachy, supine hypotension/brady, I had very wide swings supine to standing . I do also have syncope under certain triggering circumstances. When that happens it is sudden, sort of unexpected, dramatic in symptoms. As it happens my ears plug, I can't see, I go white, get clammy, nausea, ears ring, then I slide to the ground and can't get back up until my body resets.

I always have most of my symptoms when upright like HR/BP, but some are always there like gut and dry eyes. They also get more severe as a women between ovulation and menses starting. Then I also get girl problems because of the dryness.

I think people hear neuropathy and just think it is numbness and or pain, but that is only one kind of nerve, there are other nerves that can cause other symptoms that aren't just pain or numbness. Is this all clearer now?

My neuro is almost ready to open an autonomic clinic focusing on small fiber nerves, testing like Qsart/quert, he won't have a tilt table yet. He said that while the skin biopsy proves small fiber damage, those other tests will find it earlier. If you go to phoenix neurological associates web page you will see that he deals with several autoimmune types of neuropathy. He called mine autonomic because those where my worst symptoms.

[ramakentesh]

Cool - I actually understand the science but I was more interested in whether you displayed many neuropathy related symptoms on top of your autonomic problems (the POTS part). But thanks anyway.

Have you had a QSART test and was their a definate diagnosis of anhidrosis?

Some research bodies are now suggesting most POTS is a denervation or autoimmune based neuropathy in most cases.

[arizona girl]

Thanks rama, yes that was what I was trying to say the autonomic symptoms are also symptoms of neuropathy. No I haven't had Qsart, the neurologist did the skin biopsy instead which superceeded the Qsart, since it did show denervation. I have the pictures and can see that with my own eyes. I know though that I don't sweat normal. I also have bald patches on my lower legs were no hair grows. The only noticable sweating I do is nite sweats and it is usually just my head and neck areas. My eye doctor tested my eyes and was surprised to see how dry they were.

If the biopsy had been normal, he would have done the Qsart. Phoenix neurological is setting up an autonomic lab minus TTT, and will be doing Qsart. I asked why did he need that if the skin biopsy was enough to objectively prove denervation. He said that it will give them the opportunity to catch it earlier. As far as typical neuropathy symptoms. I get pins and needles all the time and my hands and feet puff up and feel like they have sunburn. At night when I lay down my hands and lower legs/feet will buzz and vibrate. I wake up a lot with part of my body numb. It also happens when I sit to long in the same position. For me the autonomic symptoms are more disruptive as I have gotten used to living with body pain.

Wow, I've been googling a lot where did you find that they are saying they think it is an autoimmune neuropathy? I know Grubb agreed on that with my neuro.

Rama do you think that is the case with your AKS? Have you considered getting a small fiber biopsy or Qsart? I know when I was first diagnosed with mixed connective tissue by a rheumy, many of the arthritis's were autoimmune.

Thanks for the input, you seem to understand and find things the rest of us don't. I hope I understood and answered your question better this time.

Cool - I actually understand the science but I was more interested in whether you displayed many neuropathy related symptoms on top of your autonomic problems (the POTS part). But thanks anyway.

Have you had a QSART test and was their a definate diagnosis of anhidrosis?

Some research bodies are now suggesting most POTS is a denervation or autoimmune based neuropathy in most cases.

[issie]

arizona girl,

Hey, wrote you two PM's. Take a look! Talk to you later. Thanks for sharing you'r symptoms. It helps us all make sense of something so complex!

[ramakentesh]

Yeah thanks. Certainly worth checking out