Any Ideas?

[Foggy01]

What would you think if I were to tell you I've progressively been having sensation reduction (pleasure, pain, body position, temperature, etc.) across my body for years now, significantly worsening the last few months and especially the last few weeks (almost exponential in its increase in severity). It usually starts in an area and spreads spatially over a few days although sometimes the whole body can suddenly be affected at once. It is unrelenting and progressive since I was 14. It is not sensation loss (100% numbness, burning or tingling) so neurologists arent interested. I believe the ultimate cause is vascular as the sensation loss always correlates with vascular changes such as POTS or increased vasoconstriction and worsened blood flow (more and more body parts ever more frequently and easily going numb and/or cold and/or tingly, increased weakness and fatigue).

Diabetic neuropathy interests me as it is the only process that seems to be understood by doctors where blood flow affects nerve function and not the other way around (such as in the case of dysautonomia). Otherwise they seem highly unwillingly in general to contemplate pots and other blood flow disorders' effects on nervous function (such as central [brain fog] or peripheral in the case of sensation loss ["forgetting to breathe" that RichGotPOTS, mama_destiny and others report]). The vascular effects on nerve function (rather than the other effects glucose has) sound a lot like what I am experiencing.

I have been diagnosed with hyperadrenergic POTS and probably have low blood volume and seem to have terrible peripheral blood flow such as in the skin and limbs. If you want to know more about me then feel free to ask.

Im curious who I would go to about this. There seems to be no such thing as a vascular-ologist. Doctors understanding of vasculature seems to be just whatever intersects with their own little area. Like a connective tissue disorder doctor will understand raynauds but little else that can happen to vasculature. A neurologist will have a cursory understanding of how autonomic nerves effect vasculature. Cardiologists only seem to know about that which can cause a coronary. And so on. None seem to have any knowledge of vasculature in totality, and things like vasoconstrictive states (such as that caused by ang-II that Stewart et al. discovered) seem to be completely off the radar. (One neuro I was at threw Stewarts papers back at me saying it was irrelevant because it the measurements were only from the skin. He also implied Stewart's research just just exists to gobble up grant money. Based on a recent post I think you can make a guess which particular facility this was. He said he knew Stewart well so even those who are his "friend" dont seem to have a clue about his research.) Tentative things like NET transcription reduction due to a il6 cytokine causing the reduction of transcription factors like hand2 obviously sound like greek to them. So who in this world of marching morons does one go to that actually has even an understanding of vasculature let alone its potential effects on nerves. I dunno. Guess Im screwed.

[arizona girl]

Foggy, hugs!

Your observations are great. Having chased down UCLA, Vanderbuilt, Grubb, and Mayo, you realize that everyone has their own research position. There is a lot of ego and competition between research facilities, especially for funding and that their position is the correct one. If you understand that and use your own filter to look at the results you get from them as it relates to you, you can still get what you need, whether you agree with their hypos or not.

As for the Diabetic neuropathy, you are on target with that. Diabetic neuropathy is acutally small fiber neuropathy that has been caused by the damage glucose and or insulin causes. Also diabetes is starting to be considered an autoimmune disease, so there is that factor as well.

Other conditions can cause small fiber neuropathy. There are several kinds of small fiber nerves. If you google it you will see that it covers the symptoms you are describing. My understanding and I could be wrong, is that small fiber nerves are found in the vasculature and allow the blood vessels to constrict on standing with gravity, which forces the blood up to the brain. When those nerves get damaged it causes the blood to pool because the damaged nerves can no longer constrict the vessels. Depending on your bodies abilities to compensate your body should go into flight/fight, as it senses lack of oxygen to the brain. This then causes the body to shoot off noradrenaline or norepi. Norepinephrine also constricts the blood vessels. I'ts kinda of like a back up system. The norepi though can become excessive and then cause standing hypertension and pots. I can't prove it, but I suspect that those that get hypo on standing are no longer able to produce the norepi and have no mechanism in place to counter gravity.

A subspecialty of neuro's who specialize in neuromuscular autoimmune diseases will understand and be able to test for SFN. There are not a lot of them out there. I'm fortunate to have one where I live. Hope this give you some hope and that your not completely screwed.

[ramakentesh]

Every doc has their own view.

Look at the abnormal MIBG results in POTS - some presume it indicates cardiac denervation, others that it demonstrates faulty norepinephrine reuptake.

Arizona - i love arizona and can you remind me - did you have a good reaction to IVIG?

[Joann]

Arizona Girl,

Can you explain what you meant about the hyper pots and the norepi. You said something about it becoming excessive and then not able to produce it. This confused me, if we can't produce it why is it excessive? Sorry, it might make perfect sense, but I just can't figure it out.

[jangle]

Foggy, Arizona girl has some very good ideas. Have you had any small fiber neuropathy testing? If not I unfortunately can't assist you about who to go to as I myself am in the boonies. The progressive nature suggests several things but the sporadic location and duration lends me to think of underlying autoimmune process at play. In the end something like half of sfn cases are labelled idiopathic and get ivig thrown at them. Don't be discouraged by dismissive docs, they re just in denial of how little is actually known in this field.

Have you had a QSART?

[arizona girl]

Hi Guys,

Rama, I've always been fascinated with australia. Hope one day to be able to do the flight. Arizona is a beautiful place to live, anyone ever comes this way I'd be happy to share it with you. I've lived here since 1972, so I know the good places.

I am tolerating ivig very well, it's almost been a couple of years. I've only had about two infections since I started. Of course, for a long time I didn't even realize I was having infections because I was not producing much of a fever when I had them. If my colon hadn't ruptured we may not have figured that out. It for sure isn't a cure and doesn't get rid of all the symptoms. I have had some improvements in my autonomics and pain levels. Not 100%. I'll take what I can get.

I did have one reaction the first time I had it. The closest thing to the shakes that you described in your other post. Thank goodness I don't get those, I don't know how you all are dealing with those, they seem very scary. I'm not so sure they are a result of a dysautonomia, as they sound more like neuromuscular symptoms and or seizure like activity. I saw a lot of those kind of patients at the infusion center my doc sends his patients to.

My doc did have to switch the type of ivig I was on after 4 months. It was carimune and had 2% glucose in it. Something a prediabetic person should never get, I'm still trying to get rid of all the weight that caused. I'm down 16, with the help of the gluemetza and T3/T4. I'm on privigen, and other then a mild headache and a bit of aches right after infusion, I'm good with it.

I would say anyone considering doing ivig should really do their homework on which ivig product is best and make sure they know what their total quantitative immunglobulins, sub igg panel, igd and ige are before starting anything. Those numbers can impact how well you would tolerate it. If anything is borderline a vaccine challenge can also show if your immune system is responding.

It just seems so unlikely, but I can't believe how many different areas of my body are defective. How can one person have so many! Ivig alone isn't enough for me, I still required t3/t4 for hashimoto, glumetza for pcos/metabolic/high insulin, plaquenil for the utcd, labetalol for the bp/hr swings when I get them, supps for mthfr gene defect methylfolate and m-b12, and d3. Of course, you'd never know from taking a look at me I've got so much going on. So many docs and people say well you look good! Ah the silver lining!

I really hope you are able to get an effective treatment plan soon. If anyone can figure out how to overcome this, it would be you rama.

[ramakentesh]

. If anyone can figure out how to overcome this, it would be you rama.

No luck yet unfortunately

Yeah i was in Arizona in 2008 when Id forgotten I even had POTS. Sensational red rock country around Sedona. Similar to the middle of Australia but different in a way - the sky there so so much bluer than australia for some reason?/

[ramakentesh]

If Doctors wanted to just gobble up grant money the last place they'd be researching is POTS/OI!

id suggest getting a QSART Foggy and seeing if that answers some question. What you describe is inusualy but the main neuropathy that is easily identified in POTS seems to be the small fibre neuropathies

[arizona girl]

Joann, I'm describing two different states. Hypotension/syncope vs orthostatic hypertension/tachy. There is a group of us who's bp goes up on standing as well as having pots. Those people when tested often have an excessive increase of norepi (fight/flight) hormone when standing from the number they have when supine. That excess norepi most likely is the cause of the hypertension. Which I only get when I'm standing. My bp/hr are totally normal when supine. That reaction constricts the blood vessels and pushes the blood up to my brain, as the nerve damage to my vascular nerves (sfn) are unable to do it as they are suppose to. The excess is what causes the hypertension.

I suspect that patients that are always hypotensive or faint quickly on standing, have also lost the nerves in their vasculature as well as their secondary back up system - the ability to constrict the vessels with norepi has also failed. Having strong leg muscles can help compensate as a third backup system as your muscle pumps can also push blood up. Which is why some us feel better when moving vs standing. This is just one set of dysfunction that can happen in dysautonomias.

[ramakentesh]

Yeah the theory is that more NE is needed to constrict the damaged regions but other areas are not dmaged and feel the full effects of the upped NE levels.

[arizona girl]

Hey, rama,

My heart is in Sedona. When I went to NAU in flagstaff, sedona was our beach. As it was only a 20 minute drive. I could go snow ski or drive down and lay in the sun. Those were the days. Of course it was during aerobics classes up there that I started having the near faints regularly. Being in college age, you tend to blow things off. I was though a frequent visitor to the campus health center.

We also have the most amazing sunsets. In spite of being sick those are the kind of things that make me feel truly blessed.

[ramakentesh]

I stood on one of those 'vortexes' and I felt dizzy - but in a weird way. there is something to that stuff.

[issie]

I found that trying to lower my NE so much was not the right way to go. I do have the high bp's with standing and high NE levels with standing too. Lowering it down - caused worse dizziness, more blood pooling and edema. Finding a way to increase blood flow to the heart and brain seems to be what needs to be determined. I also have moments of numbness that is in different areas of my body and I know that blood flow has something to do with it. It has to do with the veins of the body and not the arteries ----I think. I notice that my feet and legs get a whole lot more numb with compression. Too much compression and that happens. I try to not wear my compression - unless I'm going to be up and moving. It seems to keep my legs from pooling so bad. Complete blocking of NE with some of the meds I tried made me so lethargic and slowed my system down a whole lot. When I was having severe swings from high to low ----getting that in balance with some meds ----was a good thing. But, when I got it more steady - I came off the meds and that drastic swing didn't come back.

There was a doctor that I saw at Mayo in AZ - he is in the cardio team but deals with vascular issues. That is his specility and he does testing to determine blood flow to the limbs with standing, laying and exercise. My pressure in my legs increased considerably with upright stand - that indicated blood pooling. It's a fairly new test that Mayo has to help determine these things. Non-invasive too.

Issie

[Angela]

i am not native to az and have a hard time with phx, it just lacks history for me and is blazing hot in the summer. my fav spots in AZ so far are jerome, and strawberry. in strawberry only the winter so i can sled and feel like a little girl again. jerome you get the feeling like being in another world and culture, despite the tourists but you get those in sedona too.

i occassionally converse with someone from the uk who goes to sedona 2x per year, she swears it gives her energy/healing. i guess lotsa people believe that. she has cfs/me, pots and FL1953.

not trying to hijack the thread tho. (sorry foggy01)

[ramakentesh]

Those vortex are powerful.

[Foggy01]

Still waiting on the doctor I went to to draw up a "diagnostic pathway" (series of autonomic tests) and the QSART maybe would be one of them. Dunno. No immune tests or anything will be done sadly as he's not an immunologist and I hear they're all very poor at doing immune related tests over here in the UK anyway.