Autonomic Neuropathy-Possible Autoimmune Vs. Pots

[Maiysa]

Hi All..I'm new- so I have so many questions. Can someone tell me the difference between Autonomic Neuropathy and POTS. They seem to be similar. I don't faint as much and only occasionally. Sometimes my fainting turns into a full black out and I can turn blue. During the mild ones, I just look drunk. (my local neuro thinks it's a form of dysreflexia-but I don't have a spinal injury, so I don't understand it) Anyhow, is orthostatic hypotension and orthostatic hypertension the same as POTS? I can sometimes stand for a while, but if I'm not well, I can't-my blood pressure goes up not down. Thank you!

[Guest maia]

Hi Mayisa, I cant answer your questions but i can give you a little info from personal experience in hopes that it may help.

POTS is Postural Orthostatic Tachycardia Syndrome... a group of symptoms that together are called POTS

POTS is a form of Orthostatic Intolerance... both are forms of Dysautonomia and both can be caused by Autonomic Neuropathy

Orthostatic Hypertension is when the blood pressure increases in relation to posture

Orthostatic Hypotension is when the blood pressure decreases in relation to posture

Autonomic Neuropathy can cause POTS and can sometimes be the only cause in an individual. There are many causes for Autonomic Neuropathy and POTS.

Here is a vanderbuilt study on ortho hyper: http://www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html

once when very ill with an infection no one could figure out, my bp went up - oddly along with my H and H.

Sorry, i cant comment on the fainting vs full blackouts vs mild ones and turning blue... maybe if you clarified your questions a bit...

what is your Dx?

[juliegee]

Maia-

Great info. I can't say with certainly that all of it is correct- although it may be There are so many terms to try to grasp and understand. As far as definitively defining a causitive relationship- I don't think we are there yet. This just came up in another thread!

I always think of Orthostatic Intolerance as an umbrella term to describe all syndromes/conditions in which OI is an issue, like POTS/NMH/VVS/NCS, etc. Dysautonomia is the other umbrella term for the same thing.

As far as Autonomic Neuropathy causing POTS- don't think we are there yet although you may end up being right I think conventional wisdom says that the opposite is true- long term dysautonomia is thought to cause neuropathies. At age 12, docs at Johns Hopkins said that my son had a GI neuropathy SECONDARY to his autonomic dysfunction.

I like the Mayo site describing Autonomic Neuropathies- although it is compelling to note that dysautonomia is NOT listed as a cause http://www.mayoclinic.com/health/autonomic-neuropathy/DS00544

Oh yeah, there is such a thing as autoimmune dysautonomia. Here's a blurb from Mayo: http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/05.html There is specific testing for it AND it can be associated with a few different types of cancer.

Malysa, so much to wrap your head around! We've been at it for years and I'm still learning everyday

[Maiysa]

Maia and Mack's Mom, Thank you so much for your replies- very helpful! Yes, alot to wrap my brain around. Maia, the article was very informative, now if I can just remember it. And you are right, I think I did put a semi question in there about my severe black outs-one neuro is calling it dysreflexia. I will save that for a different post-It gets so complicated. Sorry about that. Back to the POTS question-that does clear things up. I thought people who had POTS just autonomatically had Autonomic Neuropathy or vice versa, but I see it is a form of Dysautonomia. I'm trying to keep it all straight., wish me luck. Mack's Mom, yes, that's the word I was looking for-orthostatic intolerance. I have it, but didn't know exactly what it entailed- your quote of it being an umbrella makes sense to me. Thank you. I have had a slight form of dysautonomia since I was a little girl and at 42 developed a sudden onset of Autonomic Neuropathy that came along during a terrible lung infection. My auto neuropathy is the autoimmune type. I took all the tests at Mayo and am thankful that I didn'tt have any of the causes you mentioned. So my autoimmune source is unknown. I was told that there are several autoimmune disorders that are undiscovered. But they believe the Dysautonomia was intially started when I was around 8 after a severe stomach infection that landed me in the hospital for quite a while. After that I fainted occasionally and had more health problems. I never thought I would be here talking about it. We never know where life will take us. And I'm so sorry about your son. This has to be terrible for the little ones and the parents. I don't know what GI neuropathy is, will have to look it up. Thank you both!

[arizona girl]

Hi, got your note. I was offline because I had IVIG this week and got a bad headache. I read your posts, you said that mayo was far for you does that mean your not in arizona? I've read your posts and see that we do have similar symptoms. I don't black out though, just near syncope that I'm good at avoiding triggers for. I've been out to mayo too, not to goodman, but other docs there and found my experience there to not be helpful.

I'm guessing you had the tilt table done and skin biopsy done? I don't know if you've looked into the other causes for autonomic neuropathy? Yes pots, hyper, hypotension and syncope can be a symptom of this type of neuropathy. It is important to look to other cause when this is diagnosed, I think goodman at mayo does a good job of treating symptoms, but not necessarily looking to further cause. It least from the feedback on this forum.

There is a strong association of sfn/autonomic neuropathy being caused by many conditions some of which are life threatening. If you read my posts I've talked about many causes and the testing my autoimmune neuromuscular neurologist has tested me for and is treating me for.

My neuropathy is autoimmune and has an immune deficency. I also have just fully presented with Lupus.

So, how can I help you?

[juliegee]

Pardon my questions- not trying to hijack your thread, Malysa- BUT I'd love to ask you some questions AZ Girl. Maybe lots of us can learn from you

Over the years, I have noticed that we have many similar symptoms too. How do you KNOW that your SFN is autoimmune? (How was that DXed for you?) How does your immune deficiency play into this? What were your primary symptoms that took you to the doc?

I don't have CVID, but I do have chronically low IgG, around 500 and my IgA is intermittently low. When I am tested for pneumonia antibodies, I have some. I have intermittent symptoms of SFN, burning feet mostly. My hands and feet are dramatically impacted by inappropriate vasoconstriction (reynaud's) and vasodilation (hot, stiff, burning hands & feet.)

Forgive all of my questions, AZ Girl. I'm just trying to learn how all this fits together. BTW, so sorry your last IVIG was rough. My rheumy wants me to start & I am hesitating as I am afraid I will have an anaphylactoid reaction. Have you tried the sub Q form?

Thanks so much for your help-

Julie

[HopeSprings]

Oh perfect timing! Arizona Girl - I just got a positive result for SFN through skin biopsy. I'm trying to understand what this means - how this plays into POTS (if at all). I don't know if this could be causing POTS, or if they just co-exist. Maybe it's only causing the burning feet. I dunno. My Dr. tested for several things that could cause SFN - all negative so far.

[Maiysa]

Thank you so much for your post AZ girl and Mack's mom. AZ.. so sorry about the IVIG and the headache. Also sorry to hear about the Lupus. My best friend has it, I know it's not easy. Since she was first diagnosed, ten years ago, I'm happy to say, she is doing better than ever. I hope the same for you AZGal. But I know it's not easy. Wish I could make it better. It's a tough journey isn't it?

Thanks for asking all the questions Mack's Mom, they are good ones.

I did have a tilt table test, but was negative which didn't make sense since I passed out all the way to Phoenix from Nevada. I even ended up in the hospital from the drive in Kingman...but the tilt table showed nothing. Go figure. I did the EMG?? test 6 years ago before I got sick and that was semi abnormal but nothing to worry about. I have not had a skin biopsy. I don't even know what that is. Hmmm. Before Dr. Goodman I had extensive blood work for 5 years after a terrible bout with Valley Fever. Mayo did the Qsart test which was abnormal, so he did another round of extensive blood work to find the cause of autonomic neuropathy and nothing showed up. I remembered that i had burning in my spine during the valley fever. So he ordered a spinal tap to rule out meningitis. Ugh!!! Thank Heavens that was negative. So it was concluded that the valley fever damaged my nerves and autonomic nervous system. I was never the same since the day I acquired valley fever- It wiped me out. I was having a lot of mild autonomic issues since I was a little girl but nothing that took me down, except the occasional black outs every few years. Which we are still trying to figure out what they are-since my blood pressure can drop so low I can have a seizure, but not often. One neurologist here called it Dysreflexia. I'm pretty new to the diagnosis-so we are still working on it. Dr. Goodman did say that I have some unexplained issues going on. They called today and told me to come back down when I can. Our insurance doesn't cover Mayo, so I will go when I can. He has been great about only ordering tests I can afford and trying to do the majority through my insurance carriers. May I ask who you are seeing AZGal? Sounds like you're in good hands.

Also, Mack's Mom, I have low...IGA? I can't remember, it showed up on a celiac test. I have wheat gluten sensitivity and the IGA?? showed up low. My family doc said I am susceptible to infections. So weird that you have the same thing. Hmmm. We all have the same issues. I guess it makes sense. Wish they knew more about this stuff.

Good health to you girls. Thanks again.

[arizona girl]

Hi guys, well I was planning on posting a new update on what's been going on with me. I've noticed there are a lot of new folks posting and focused on pots being THE diagnosis and then only treating symptoms and not cause. So, I'm going to start a new thread so the newbies can see that there can be more to this, especially if small fiber neuropathy has been diagnosed.

Also any newbies that want to know what causes I was tested for can search my posts about small fiber autonomic neuropathy and use my neuro's name Dr. Levine in arizona, not the one in texas with the exercise plan. I don't feel like retyping all that stuff again. Okay look for my new post, okay. AG

[issie]

arizona girl,

Your PM box is full and I can't send you a messeage.

Issie

[HopeSprings]

Maiysa - interesting (for lack of a better word!) about the Valley Fever. My fear is that something (infection in your case) damaged the autonomic nerves and that we won't be able to come back from it. As far as I know there isn't a cure for nerve damage. Did the Dr's say anything about this?

[Maiysa]

Thanks AZgirl, I will look for your old posts. I'm sure you don't feel too great right now with what you've been through this week. Feel better soon. Thanks for telling me what SFN stood for. It's all new to me. Thank you.

Naomi, I'm sorry you're having the trouble you are having. The doctor wasn't sure what tomorrow brings for me. But I've been reading a lot about alpha lipoic acid. I'm drinking the natural and organic smoothies and adding the alpha lipoic acid. I only drink a small glass daily as too much elimination can make me feel woozy and those vege/fruit drinks can do that. I don't know if it's going to work, but I keep telling myself it will. We will see. What did help with my nausea and a few other mild symptoms was to eliminate wheat. That was hard to do!!! I gave up after 4 days of not seeing any results. haha. But then read it could take up to 6 weeks to feel better and they were right. IT seemed to help a bit with the dizziness too. I am having terrible anemia right now, so the dizziness will be back in a day or so, and am back to craving a good wheaty donut! I go back to the Doc at Mayo as soon as I can, and I will ask that question as to what hope he gives this. I never asked because I didn't want to know the answer. But he did say he wasn't sure which way this was going to go. I didn't want to know any more-cause me's a chicken.

[issie]

Maiysa - interesting (for lack of a better word!) about the Valley Fever. My fear is that something (infection in your case) damaged the autonomic nerves and that we won't be able to come back from it. As far as I know there isn't a cure for nerve damage. Did the Dr's say anything about this?

I had real bad neuropathies starting in my feet, legs and also hands. When I stopped eating glutten, dairy and sugar - it started getting better. I also think that wearing really tight compression hose made the neuropathy worse. I still have it - but it's better.

[HopeSprings]

"I had real bad neuropathies starting in my feet, legs and also hands. When I stopped eating glutten, dairy and sugar - it started getting better. I also think that wearing really tight compression hose made the neuropathy worse. I still have it - but it's better."

That is very encouraging news! I hate the idea of permanency. Thanks for sharing that.