Skin Biopsy Showed Autonomic (sm Fiber) Neuropathy

[arizona girl]

... will think about all of this. I'd love to see what you all think about my findings and thoughts, as I prepare to go see Dr. Grubb at the end of the month. I really want to make the most of that visit, and not leave anything out.

So, I met with Dr. Levine last wednesday, he showed me the pictures of my nerves and said I had less then I should have, he also told me that my sleep is being disrupted about 13 times an hour, I'm getting no stage 3 sleep, mostly I'm having significant drops in oxygen during rem. I was PMS and did have a bad nite during the study. Thankfully I do get some good nites. Oh if you have sleep apnea you are not to take any central nervous system depressants. So, what do you do when you have pain keeping you awake?

He said that there is a 30% chance of improving this with IVIG infusions, not great but better then nothing, he also wants me to go back to sleep center to do cpap. So, I'm waiting to see if insurance will pay for all of this. They have paid for most of the testing. Hope they pay for treatment. It is a relief to know that all of those scary tests for cancer and stuff came back normal.

I'd say that the neuropathy has caused a lot of disruption with my autonomic symptoms. I get elevated BP/HR and a low grade fever just from talking or being on my feet. Interesting I'm not hypotensive on standing, I get orthostatic hypertension. Only get hypotensive less then a minute before a presyncope episode occurs, then I get so sick and loose control of my legs, next thing I'm kissing the ground and can't get up. These episodes usually take an added stressor to trigger them, which I've gotten very good at avoiding. I already have mild left ventricular heart dysfunction. So this really appears to be effecting my cardio vascular autonomics. None of the beta's or BP meds have helped. They either make the hypertension worse of drop my HR and BP to low when I sleep. These episodes have been happening to me since I was a kid.

Interestingly when I googled the sleep stuff, I found that my hyperinsulinemia/pcos/metabolic syndrome or diabetes (don't have) are strongly associated with sleep apnea and daytime hypertension. My take on the studies is that the sleep apnea may lead to these problems. I do know that though my blood sugar is normal, mine is higher at nite then during the day, it should be reversed. So maybe the neuropathy is making it hard for me breath during sleep, or maybe the high insulin is causing the neuropathy, though most diabetic neuropathy is caused by high sugar, which I don't have yet. So which came first sleep apnea, high insulin or neuropathy? I also read that the apnea can cause nite sweats, which I have been having on/off for 20 years. The sweats get worse during the second half of my cycle. Well all my symptoms get worse during the second half.

I also have digestive issues, but the free perforation of my colon last year doesn't really fit with the typical gastro problems. So, I think that may have been a result of the abdominal trauma I got during a bad car accident. Don't know if the trauma could have bought on the neuropathy. I did have lots of trigger points and muscle spasms from the accident which I've spent that last few months treating w/myofacial release at my chiropractors. About 80% of that type of pain is gone, I do still have the typical burning pain in the arms and legs that neuropathy causes.

The only other thing that I think may be underlying this is that I have a small adrenal nodule, 1 abnormal ACTH stim test, f/ups were normal, and positive titers for the cytomegalo and HV66 viruses, had mono, have positive PPD for TB, no active disease, endometriosis, and I was exposed to fogging chemicals for inch worms in the 1960's when they would fog the neighborhoods in long island. Also things like EDS and MS have been ruled out.

So that's my body in a nutshell. Please feel free to pick this apart. Thanks everybody!

[daisy]

I also am not hypotensive while standing but like you get the orthostatic hypertension. There are times I can go low while standing but more often lately, I go high. My understanding is that I probably have the hyperadergenic form of POTS but we haven't definitely confirmed that. I also too go really high with heartrate and bp while talking.....very inconvenient. I hate that - that's one of my toughest symptoms to work through. I mean, we have to talk don't we?

All the best to you with your upcoming appointment. Hope you get all the answers you're looking for

[janiedelite]

When I went to Mayo, they diagnosed me with small fiber neuropathy based on quantitative sensory tests. My hands, feet and face burn all the time, and the burning spreads inward to my whole body with stress, heat, or activity. When I did the TTT, they noticed that my supine BP went from 130/70's to 160's/110's just while talking about everyday issues. My norepinephrine is mildly elevated on standing, so the neuro gave me the diagnosis of mildly hyperadrenergic response to neuropathic POTS.

I haven't tried IVIG. They suggested we start with mestinon, but as hubby and I are still trying to conceive I'm avoiding the heavy POTS meds. I know there are others here who've tried IVIG.

As for meds to control your pain, I see a local neuro who specializes in treating small fiber neuropathy pain. These docs are a lot easier to find than those who treat autonomic disorders! Could you try a tricyclic antidepressant?

I've posted several times about the painful flushing I get while talking too. It doesn't happen all the time, but a stressful even will trigger it and then I seem to struggle with it for weeks. During the flushings BP goes up, I get red of head, neck and chest, the red skin burns, hands and feet get freezing cold, chest and head pain and pressure, and just feel sick and exhausted. The only thing I've found to help is benadryl or pain meds (both CNS depressants ).

I also was in a traumatic car accident in 2006 and had 2 hip surgeries. I also had mono in 2006. The burning started slowly therafter and built up. My mom also has this same small fiber neuropathy which came back just before she came out of remission for carcinoid syndrome 4 years ago. She's on neurontin. I do think there is a genetic trigger in our case, which is triggered by trauma/illness/stress.

Good luck. There are a lot of members here with small fiber neuropathy.

[arizona girl]

Yes daisy, I joke around about finding a job where you can lay down and not talk. I will take it if someone can find me a job like that. Yes, I love social events, but body just wigs out in those situations, not that I let that stop me.

At my last cardio doc appointment they did an ecg, and I had told the nurse that my HR jumps when I talk. A minute later while it is running, she goes you are right your heart rate does jump. So it does it even when I'm lying down and talking.

Thankful, I'm thankful that I don't get that flushing. Your symptoms are a bit different then mine. My BP and HR usually drop when I'm supine. Though during my sleep study HR spiked down to the 40's and up to the 120's, but wasn't continuous. I have yet to have blood norepinhrines and such tested.

The neuro I'm seeing actually specializes in the small fiber biopsy and the testing of it they don't send it out. I think because mine is more autonomic then just the small fiber, he is saying do the IVIG, first. To see if we can stop the progression. My cardio is in agreement. She said to ask Dr. Grubb, what can first the sleep apnea, hyperinsulinemia, or the neuropathy. I was on those tricyclic's when they thought I had fibro 20 years ago, they didn't seem to change anything.

While researching I found that the IVIG treatment is okay to take when your pregnant and may help with multiple pregnancy loss syndromes. You might want to consider it. I'm in Arizona and Phoenix Neurology is one of about 8 infusion centers in the USA.

Best of luck on getting pregnant. I really wanted a little girl. At 52 I think that ship has sailed, though until menopause starts, I think you always hope.

[juliegee]

Wow, Arizonagirl....I hate to hear of all you've got going on, but I guess it's a relief to have some DXes and some answers. I'm confused about something. I will wait for your answer and also google to learn more. Ialso may have to start IVIG but for a totally different reason. I had no idea it was used as treatment for small fiber neuropathy. I have really low IgG and IgA- they are components of the immune system. My IgG (at last check) was 500 (normal 750-1,500.) If mine goes below 500, I'm also going to have to get regular IVIG infusions until it goes back up.

I've never had all of the extensive testing that you've had, but I suspect that my HR and BP also go up if I'm talking. I instinctively try to stop talking with the nurse as she takes my BP so it won't be high. Sitting down (when I'm quiet) it's usually below 90/60. Like Thankful, I get all of that flushing too. Can't help but wonder if we all have similar things going on. I'd love to hear your IgG numbers. Did anyone ever test them?

I hope you get relief soon-

Julie

[juliegee]

Here's a link that list all of the reasons a patient would need IVIG: http://www.americanoutcomes.com/ivig-diseases.php

With just a cursory glance, I didn't see small fiber neuropathy mentioned. Did I miss it? Could you have something else going on? Maybe this is experimental for your condition. Hmmmmmm.

[arizona girl]

I got really lucky on the testing. I knew all these tests needed to be done after reading up on this website, but not where to go to get them. I questioned my 1st neuro about the small fiber testing when the large fiber emg was normal. If I hadn't been so well informed by this web site, he would have sent me on my way. So the request for the small fiber testing, not the dysautonomia was the only reason I got referred to phoenix neuro. How refreshing to me that Dr. Levine knew about dysautonomia and new that we had to test for a bunch of stuff to figure it out. My cardio vascular workup really could only look at this from their end. Cardio testing included the positive TTT, which really changed everything for me in getting heard anywhere else. This has been the most struggle free quickly executed doctor's encounter I have ever had.

The tests the neuro ordered where: Neuronal Nuclear w/reflex, Angiotensin converting enzyme, immunofixation, immunoglobulins quantitative, sed rate, sjogren's antibodies, amphiphysin antibody test, ganglionic AChR Antibody test, VGKC. The skin biopsy and sleep study. I don't have a copy of any of the labs yet, waiting on them. He only addressed the biopsy and sleep study findings and said you have neuropathy, but we don't know why. Not knowing why didn't seem to matter to him, the positive biopsy, was all he seemed to need to know, to decide treatment. If you google these different tests you can see what they are for. Also if you go to Phoenix Neurological Associates web site, it talks about the many different disorders that IVIG can be used to treat. He also ordered new testing for methylmalonic acid and homosysteine, to see if I have an underlying B-12 problem. My sister has this.

So, I think the two immuno tests above did check my IG's, I just don't know what they are yet. The only time I get red, flushing is in association with heat or pressure, like crossing your legs, red marks left. I have been trying for 20 years to get someone to figure out what's wrong. It almost feels unnatural that since april, all of this has wrapped, so quickly. I'm like no really, really we finally know whats wrong. Not sure all the why's have been answered, but does that really matter, when there is enough now known to go ahead and treat. I have been waiting for the treatment phase for evvvveeeerrrrr!!!

I want to see what Dr. Grubb take is first. As far as the IVIG, I googled it, and you will see it is now an approved treatment for a lot of different conditions. One thing to note is that there are several different IVIG products on the market, made with different support ingredients. So you want the one most likely to not interfer with your particular condition. Like me with hyperinsulin, wouldn't want a product that has glucose as a base. I did also read that if IGA is low that is harder to treat and you can have an allergic reaction from the product. GEEZ 500 is already below the range what are they waiting for!!!

[arizona girl]

Here's a link that list all of the reasons a patient would need IVIG: http://www.americanoutcomes.com/ivig-diseases.php

With just a cursory glance, I didn't see small fiber neuropathy mentioned. Did I miss it? Could you have something else going on? Maybe this is experimental for your condition. Hmmmmmm.

He actually called it autonomic neuropathy. Polyneuropathies are approved for treatment. I think he is a research center for small fiber neuropathy, I believe he said in my first appointment that they do use IVIG to treat it. I hope it's covered because if my insurance dosen't pay for it, I won't be able to afford it.

[juliegee]

Here's a link that list all of the reasons a patient would need IVIG: http://www.americanoutcomes.com/ivig-diseases.php

With just a cursory glance, I didn't see small fiber neuropathy mentioned. Did I miss it? Could you have something else going on? Maybe this is experimental for your condition. Hmmmmmm.

He actually called it autonomic neuropathy. Polyneuropathies are approved for treatment. I think he is a research center for small fiber neuropathy, I believe he said in my first appointment that they do use IVIG to treat it. I hope it's covered because if my insurance dosen't pay for it, I won't be able to afford it.

Very interesting! I learn new things here every day. I'm dying to know what your IgG and IgA levels are. Let us now when you find out. If those are also low, that would point towards IVIG being a real answer for you. My fingers and toes are crossed. let us know how it goes.

Julie

[erikainorlando]

I apologize in advance for my ignorance...but no one ever recommended that I get IVIG. Is this because I only have POTS?

I did get IVIG when I had Guillain Barre. I also had plasma pherisis (spelling here...not right I am sure) but neither one ever helped. I had so many treatments of it at that time. My mom was concerned that I would have a stroke from it so they stopped it...my body finally kicked in and I started to recover ...

Is it considered dangerous?

Thanks!!

Erika

[dsdmom]

Ivig is not standard care but has been used empiracally. There are studies of usuing it for acute pandysautonomia. The problem is that insurance would have to approve it since it is not the norm. If your doc thinks it would help you might as well see if your insurance would cover it. I think I may try this option soon with my neuro. We'll see what happens.