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Skin Biopsy Showed Autonomic (sm Fiber) Neuropathy


arizona girl
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Hey Ram and Thankful, I had a some questions about your replies to me, would you guys take a minute and review, this post and replies? thanks so much?

... 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! B)H

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Interesting that you have small fiber neuropathy associated with a hyperadrenergic response. I guess that would mean you have hypersensitivity of the remaining nerves to compensate.

Alpha agonists may be helpful - droxydopa in particular.

Rama, why do you suggest the droxydopa? When I googled it I mainly found that it treats Orth Hypo not Ortho Hypertension, which I have. I have syncope as well, but I'm elevated right up to less then a minute before I drop. The drop usually takes an added stressor like, heat, humidity, motion, medical procedure (med procedure drop me when I'm supine)

Also I found very little when I googled hyperadrenergic, neuropathy and hypertension. I'm having a hard time understanding why I'm hypertensive with my symptoms and lab results most people would be hypotensive, but I seem to overshoot. I do know that the sleep apnea or lack of oxygen in my case can lead to the insulin resistance which then causes hypertension, but I'm only hypertensive when standing, and or talking. As soon as I lay down and am quiet BP/HR drop, and during sleep at times I'm brady and hypotensive. Symptoms was I'm pretty sure everyone of my autonomic functions are compromised in some way. I have a high startle response, I get hypertensive, high HR and a fever just from animated talking.

I would love to just fit into one category, but I don't seem to.

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Just to let you know, Mayo said my BP shoots up on talking and standing because of a hyperadrenergic response to my blood pooling. Yes, most people would have lowered BP, but my adrenaline levels quadruple on standing. You can find out if this is the underlying cause of your postural hypertension by having serum catecholamines drawn while lying quietly, then standing. My body shoots out extra adrenaline in response to any orthostatic stress BECAUSE of lack of bloodflow to my brain.

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Just to let you know, Mayo said my BP shoots up on talking and standing because of a hyperadrenergic response to my blood pooling. Yes, most people would have lowered BP, but my adrenaline levels quadruple on standing. You can find out if this is the underlying cause of your postural hypertension by having serum catecholamines drawn while lying quietly, then standing. My body shoots out extra adrenaline in response to any orthostatic stress BECAUSE of lack of bloodflow to my brain.

Really! So if that is happening how do they treat it? I've had a terrible time with BB, they lower my heart rate, but then the hypertension gets worse.

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Follow-up if you can please !!!!

Hey Ram and Thankful, I had a some questions about your replies to me, would you guys take a minute and review, this post and replies? thanks so much?

... 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! B)H

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