Had My 1St Skin Biopsy Today (Without Numbing It) How Many Had One?

[RichGotsPots]

I saw a Neurophysiologist in NJ today for the 1st time and I checked him out before hand that he does skin biopsies and by the end of the visit he asked if I wanted one and of course I jumped at it haha i also asked to have it without lidocaine or numbing. He said he never did that but sure. It felt like a really bad pinch but i played a game on my ipad and it was over in less than 3 minutes. He took on at my right ankle and one on the top of my foot. He knew a little about pots and about a nyc dr who specializes in it. He was originally from England. He also noticed that I can't feel temperature on my shin.. Anyway of the last couple of years I've heard a lot of ppl say they got biopsies and Mayo reports as much as 50% have sfn so I figured I'd poll for some numbers

[arizona girl]

Hey Rich, Glad you finally had it done. Just wanted to let you know though that the biopsy for sfn is to be done just above the outside ankle and the outside of the upper side thigh. By doing both these locations it checks for length dependent neuropathy.

If you google Levine, Saperstein and small fiber neuropathy skin biopsy. You will find their medical abstract on sfn skin biopsy. You might want to show this to the doctor in the event he is looking at something else. Sorry I'm not good at putting links in these posts.

Keep us posted. I'd also ask them what lab is doing the pathology. It will take some time to get those results back. Hopefully you will know something sooner rather then later.

[RichGotsPots]

All I know is he does skin biopsies often. He only did top of my foot and side of my ankle on the right side for both not the hip. I'll google it. He said there isn't much average data to compare in other locations of the body..

[Katybug]

I hope this brings some answers for you. I know you've been turning over every rock out there. Is your breathing any better than it had been?

[Angela]

Saperstein is my neuro:) I like him a lot so far. I brought him info on dr. driscoll but he read it and wasn't into dr. driscoll theory at all....never had skin biopsy but he did autonomic testing on me which didn't show anything irregular. still dx'd me with hyperpots based on vitals and symtoms he witnessed. Overall, I am glad that I got his second opinion of my dx other than the ep i went to who called me "pots girl".

[arizona girl]

Hi Angela, I see his partner Levine, who I was referred to after a failed TTT. That referral wouldn't have happened had I not asked the magic words after a normal emg, "Well, what about SFN".

Levine at the first visit orderd sfn, sleep study and other labs to rule out carcinoid and such. My skin biopsy and sleep study were abnormal the rest thank god were normal. He started me on pheresis, on which I improved until I got an infection and anemia. At that point he ran a Total Quantitative immunoglobulin" and we found out I had hypogamaglobulinia/cvid. I then qualified for ivig. The first ivig product was awful for me carimune. I'm on privigen now and the chronic low grade fevers are gone and infection rate has improved. I do get rocephine shots when I get one now. I still have autonomic issues, but they are better.

So how do you think this plays in with what your finding with the new protazoa doc? Did saperstein offer you any treatment plan?

They do such a good job with skin biopsies there, it be a shame not to have them do one. It was a relief for me to know that I had diagnostic proof of the autonomic dysfunction.

How'd your move go. I'm going up to scottsdale this week to f/up with a natropath that works with my rheumy.

[Angela]

Hey AZ Girl,

I actually didn't know Saperstein did skin biopsies, he never mentioned it. He had the lady who works there do the autonomic testing on me, the valvasa manuever, sweat test, and one other test that I can't recall at this time. All came back normal but I wasn't as symptomatic that day as some. I know I have a hard time trying to blow up a balloon so the valvasa coming back normal was a little surprising for me. He checked my blood flow and a couple other things on this weird computer thing he had...pretty high tech I thought. He also checked a little into EDS, noticed I have some hypermobile joints but others are the opposite (I can't straighten out my elbows:)) so we kinda let that notion go. I havn't been back to see him for several months as I am managing my symptoms at this point without adding on medication. He is the 3rd neuro I have been to and my favorite so far and I am impressed with their setup. I have also been to an EP and cardiologist of course but stopped going to them as it was a waste of money to me and the EP was not very communicative as far as I asked him to contact Saperstein before putting me on any meds and he never did. I was always in his waiting room (the EP) for over an hour for a 10 minute consult.

I know Dr. Fry has had some discussions with PNA (not sure what docs specifically or what their reactions were). But he has been invited to do lectures all over the country for different types of doctors, addressing the diet and how it has shown to help significantly with autoimmune and chronic illnesses.

My move was over a year ago, I have been in Phoenix for 10 years now but was renting, I bought my first house last November. I think the stress involved with that was what sent me into my worst pots flare I have had so far.....but I am slowly feeling better. Also think the antihistamines helped, along with klonopin for my adrenal surges. My previous pots flares I was undiagnosed and I just worked my way out of them without meds.

[issie]

I had testing done both at the AZ Neuro's office that Angela and AZgirl speak of and also Mayo Clinic in AZ. I thought that it was a little more detail oriented at Mayo. They have the same equipment at both places for the QSART - and my biopsy was done at the AZNeuro's office - which I thought they did a good job. But, for the TTT that was 10 min with neuro and the 45 min. one done with cardio - I was impressed by Mayo. Just a little FYI info. I have seen Dr. Levine there too and he wanted me to do either the plasmaphersis or IVIG since I'm also low hypogammaglobulin. But, I decided to not go that route - since I seldom get sick and don't want to mess around with that and cause more issues - if that part seems to be okay. But, we know I have an autoimmune component to my picture.

Yes, Dr. Fry - was supposed to go give a speech in Miami two weeks ago. I keep trying to find something on it - but, so far not finding a write up yet. I know he did a lecture at Mayo for cardio docs a few months ago.

Issie

[Angela]

come to think of it, i think saperstein did do some testing for small fiber neuropathy on his funny computer but it didn't show anything.

[RichGotsPots]

Issie, from What some pll have said IVIG isnt just for immune deficiency things, it helps to rebuild nerve damage as well. Actually the amount they use to rebuild nerve is twice as high a dose as they would give for common variable immune deficiency for example. What the point of finding out out primary cause if we don't treat it with the best meds? I mean there is always the natural route but its a lot longer and harder. For example the raw vegan diet I'm on now and the daily wheat grass juice. That's not for everyone..

[ramakentesh]

IVIG is used in many autoimmune disease that dont respond to conventional therapies (steroids, immunosuppressants, antimalarials)

[issie]

I'd still rather try to make my body support itself. It always takes longer with alternative things ---but, I'm willing to wait it out and see if my body will respond from a more natural treatment then something foreign that might give me some other issues. Most people prefer a pill or something "given" to them ---rather then the effort that goes into lifestyle changes. But, I think unless we get to the core reason for the issues in the first place ---you are still putting on a bandaid at that point. If we can get to the core reasons and try to get the body to function better on it's own rather than something introduced into the body ----then we will be much further ahead in the long run. What I have done or not done to my body (like diet) may be what will make the long term changes. Until I could get my thinking and determination around this concept ---I couldn't make the lifestyle changes. But, once I got to that point and realized it was up to me to make these changes ---no one could do THAT for me ----I'm in a much better place and have the determination to follow it through.

I, however, am doing things that will affect the immune system. I'm not only doing it with diet, but supplements and meds. Just not from other people's plasma - that could cause long term issues for me ----this is not something that I will do.

Issie

[RichGotsPots]

Well, I just wrote this on another one of my posts, but when I was looking into sarcoidosis and small fiber neuropathy I came across a pretty good study by Cleveland Clinic. They found that there was a decent amount of sarcoidosis patients who had small fiber neuropathy so they decided to study just these patients. Two remarkable statements stand out to me in the study. #1 they said patients who had Sarcoidosis and SFN are resistant to prednisone treatment. Which is remarkable to me, because I 1st suspected Sarcoidosis after reading a story on Dinet's regular website about a girl who had breathing issues and pots and after a year finally saw Grubb and both her and Grubb figured it out and treated it with prednisone and the Sarcoidosis went into remission. I spoke with that girl. She still has POTS but its very livable now the Sarcoidosis is gone... So in the beginning I got tons of prednisone and it never did a thing. Maybe I have Sarcoidosis or maybe the same is true for autoimmune and SFN and prednisone treatment... #2 they said Sarcoidosis patients with SFN treated with IVIG had 33% chance of longterm symptom improvement that will be obvious by the 3rd treatment. Trust me I dont want any treatments and I also would rather do it naturally but my breathing issues are unbearable. Running low on options.

[issie]

Rich, I'm still wondering about MCAS for you. So many of us have issues with breathing with this. The GastroCrom also affects the immune system. It has been a big help to me.

Do you know for sure if you have sarcodosis? Slow down and finish your testing and then make a decision as to what to do next. Since you are showing some positive signs for SFN - then you are on a new road to finding things out. It will take a little time ---and I know you want to feel better ---yesterday. But, until you know more of what you are dealing with ---it's hard to do anything else. Hang In There ---your answers are coming.

Issie

[RichGotsPots]

Thnx Issie! I haven't tried gastroCrom yet, i've known about for some time already though. But I kinda of ruled MCAS on the fact that I dont improve even all when I take Claritin, Zyrtec or allegra and not at all with zantac either. Someone I'm close to has major food allergies and I've seen close up what anaphylaxis looks like both mild and very bad. I don't have that type of reaction. What I do have are very usual allergies that don't necessarily show up on my allergy testing. For example when I was younger around 17 I had allergy testing and the dr said I'm allergic to myself. He didnt explain it and I cant find any online info about it. All I know is, if I sweat I can sneeze and I also become weak from it where I can throw out my back. Also I've always been allergic to newspaper, i think from the ink and not from mold, but not sure. And the strangest or worst one for me is I became allergic to dogs and maybe cats. I had a Dalmation growing up and I was fine but around 4 years after we had him I started getting allergic, but I just took Claritin and got a bedroom air filter and was fine. Then I had a cat for 10 years and he always slept in my bed and I was fine. Ever since I got sit I started getting a little allergic to him. And then 4 years ago when I visited friends with dogs I broke out in rashes and got allergic to their dog. Then 2 years ago I got an anaphylaxis attack of my own from someone dogs. My throat started to close up and I was wheezing and all that. That's nothing like my current pots breathing issue. I don't wheeze, my throat doesnt close up... If I do have MCAS Dr. Afrin would be needed to figure it out because the normal mcas meds won't work for me...

[tinkerbella]

I just got tested. I'm a bit overwhelmed right now. I just got iron infusions and I think it may have flared my mast cell

symptoms. Then they only took one biopsy when the doc wanted at least 2 to 3 taken. I'm starting to get very tired

of being poked and prodded. I know we all just want to feel better right now, so we can start enjoying life. May we all

find some answers soon that will give us a better quality of life.

Hugs to all ~

[RichGotsPots]

Bella they are supposed to take at least two and sometimes a 3rd one. One on the foot, one on the ankle and some get a 3rd on the hip or shoulder

[tinkerbella]

My doc is calling the lab at MGH and wants me to go back : ( for more Rich. Did you get any answers yet?

[RichGotsPots]

Yes I have small fiber autonomic neuropathy so now I have a few doctors looking for the cause.

[tinkerbella]

Very interesting ~ I'll have to follow your posts. I wish you the best! I think more and more of us are going to show up with this.

[tinkerbella]

Will you get IVIG? My doc told me that is what I could get. Also, have they built up your iron stores yet? They did that first to try to make my heart work better.

[RichGotsPots]

My Neuro is going to order IVIG, wont be east to get it my imsurance. But I'm still looking for autoimmune as the cause probably will get a lip biopsy also to rule out sjogren's and look for sarcoidosis

[arizona girl]

Rich, it is unfortunate but ivig is not fda approved for sfn yet. It is being used off label and in research trials. I was approved for ivig because my total igg and igm's were low. My neuro did have me on a much higher dose then what is used for cvid, and it did help with the neuropathy some, as we reduced the amount I had some creep back of sfn but much less then before I started ivig. My infection rate has improved.

You might want to see if you qualify due to your low immunoglobulins and severe infection rate, if you neuro can't push it through. If you do have a polyneuropathy like cidp then it is approved for that. At http://primaryimmune.org they have a lot of info. You can also qualify if you don't respond to the vaccines, even if your total quant immunos aren't low enough, as this also proves in inadequate immune system. Ruby mentioned those in her posts. It look like she hasn't been online in a while, maybe pm her.

[RichGotsPots]

The problem with getting IVIG for CVID or PID is that the amount of IVIG is much lower per KG then other autoimmune diseases or CIDP.

FDA Approved Uses

The US Food and Drug Administration has approved the use of IVIG for the following 7 conditions:

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

Immune Thrombocytopenic Purpura (ITP)

Primary Immunodeficiency states

Secondary Immunodeficiency in Chronic Lymphocytic Leukemia

Pediatric human immunodeficiency virus (HIV) infection

Kawasaki disease

Prevention of Graft vs. Host disease in an adult bone marrow transplant recipient

The first four conditions account for 70% of IVIG use.

Other Uses

Given the broad action of IVIG, it can also be used to treat a variety of other conditions, in which controlled trials establishing the safety and efficacy are still needed. Some of these off-label uses are:

Neurological diseases: Guillain - Barré syndrome, CIDP, myasthenia gravis, Lambert-Eaton myasthenic syndrome, multifocal motor neuropathy and multiple sclerosis.

Dermatological diseases: Autoimmune blistering dermatoses, dermatomyositis, pemphigus, pemphigoid.

Rheumatological diseases: Rheumatoid arthritis (adult and juvenile), systemic lupus erythematosus, systemic vasculitides, dermatomyositis, polymyositis, inclusion-body myositis and Wegeners granulomatosis.

Hematological diseases: Aplastic anemia, pure red cell aplasia, diamond-blackfan anemia, autoimmune hemolytic anemia, hemolytic disease of the newborn, acquired factor VIII inhibitors, acquired von Willebrand disease, immunemediated neutropenia and neonatal alloimmune/ autoimmune thrombocytopenia.

Infectious diseases: Acquired infectious disease that could be deleterious in low birth weight baby (ie, less than 1500 g), solid organ transplantation, extensive burns and HIV infection.

Respiratory disease: Asthma.

Miscellaneous: Acute idiopathic dysautonomia, acute disseminated encephalomyelitis, hemophagocytic syndrome, multiple myeloma and POEMS syndrome, recurrent pregnancy loss.

[RichGotsPots]

I'm appalled that more people have not had nerve skin biopies..