Any One Else Have Sensory Neuropathy?

[ajw4790]

Hi!

I was wondering to what extent others with dysautonomia have sensory deficits?

I was tested again yesterday, it has been getting worse for me recently. I have distal small fiber neuropathy, so it is mainly in my hands and feet.

I have decreased sensation to temperature, fine touch, and sharp/pain.

I actually didn't realize mine had gotten so bad. I have also been having nerve pain, mainly in my hands.

So, I was curious if anyone else had experience with this, any clue on if we can reverse it or how? My dr. made it seem like I couldn't reverse it.

I also have autonomic neuropathy and am not sure of the extent of that either for myself or in general.

Fun times!

[lloppyllama]

I have been told that I have all to a variety of those types of neuropathy and such, however my POTS doc says that really its just from the dysautonomia.

I have decreased sense to touch temp and such in my right foot...which is where i have all my issues...and where this whole ordeal with pots started...but yea im not really sure, as my doctor said it was pots, not actual nerve damage....

[MNsue]

I have a peripheral neuropathy that affects the feeling and strength in my left side. It also affects my POTS. I work with an immunologist that believes that it is autoimmune related and the POTS and neuropathy are part of the same neuropathy. I currently have IVIG once every two weeks, and it has seemed to keep me pretty stable. I have had flare ups, but I usually recover within 4 to 6 weeks. Prior to the IVIG I had left sided weakness and sensory loss that lasted over 6 months. IVIG has not been easy for me. I have lots of side effects, but it is worth it if it keeps me walking. It has also improved my POTs. I was taking 10 mg of midodrine 3 x per day and florinif. Most days I only need 10 mg of midodrine 1x per day.

It is very frustrating because there are no clear cut answers with neuropathy. I was told that there was nothing the Dr.s could do until I met this immunologist.

I hope you can find some answers.

Rhonda

[biatecki]

I`ve had Dysautonomia since 2000.I do have autonomic nerve damage but over the years my symptoms have improved .

However for the last year I have noticed some sensory symptoms ....burning /tingling feet, some loss of sensation to temp ,episodes of numbness /tingling in different parts of limbs ..

It seems unlikely to me that this would be related to my dysautonomia coming now after so many years ..I`m not diabetic and at present its just a bit of a puzzle ..

It would be interesting to see if many others have sensory problems that they attribute to dysautonomia .

Margaret

[Madwife]

Hi Guys,

I too have peripheral neuropathy, which has gradually got worse over the past 2yrs. It is worse in my feet where I also experience the intense burning pain. The numbness continues upto around calf level. My hands are 30% affected which is not good for me as I am a midwife so am desperately seeking a cause and hopeful cure or at least stabilisation. My neurologist is under the impression that I may have AMYLOIDOSIS

[Madwife]

Whoops hit the wrong button, half way through a night shift and can no longer see straight!

As I was saying they think I may have AMYLOIDOSIS which is a protein that deposits upon the nerves and causes the damage, if this is the case then it will likely require chemotherapy and possible stem cell transplant. Anyway I find out the results on 31st October, so keep your fingers crossed for me please.

Is interesting to see just how many of us have developed some form of sensory neuropathy, there has got to be a link somewhere.

Anyway take care x x

[ajw4790]

Hi everyone!

Thanks for all your input! I am still learning and glad to not be alone (but not that other people have to suffer as well!). I hope to figure it out at some point.

Actually, today in class they taught us about something useful that I have to google now b/c I don't know much about it. I think it may be part of what they have been testing me for.

Anyways thanks!!!

[pastordari]

Hi everyone!

Thanks for all your input! I am still learning and glad to not be alone (but not that other people have to suffer as well!). I hope to figure it out at some point.

Actually, today in class they taught us about something useful that I have to google now b/c I don't know much about it. I think it may be part of what they have been testing me for.

Anyways thanks!!!

What did you learn in class?

Just curious!

DARi

[Sunfish]

just to clarify a bit in regard to types of neuropathy, both sensory and autonomic neuropathy are considered types of peripheral neuropathy. my understanding is that peripheral neuropathy & small fiber neuropathy are largely synonymous.

regardless of the terminology used, i have all of the above per a wide assortment of testing (and of course symptoms) over the years. my sensory issues are far less troublesome, disabling, etc than the autonomic ones; they're bothersome/ annoying but would rarely keep me from being active if they were "all" i had going on. i don't like it but i've largely gotten used to it over the years & it hasn't progressed to the degree that many of my autonomic issues have.

i have been given the option of meds (neurontin or lyrica i believe) but with a large chance that they would add to my fatigue i've opted against them as that is a much more problematic issue for me. if there was something i could take occassionally when the burning/ tingling/ stinging is worse than my norm i would certainly be game but the available meds are such that you pretty much have to take them all of the time for any effectiveness.

melissa

[ajw4790]

Dari,

Hi! We were discussing in class Pernicious anemia and low B12. Overall it was interesting and I saw some links to myself. I think last dr. visit I had heard my B12 had been low and had new tests done, which I don't know the result yet.

Melissa,

Yeah, I know that both autonomic and sensory neuropathy can be lumped together under the category of peripheral neuropathy. I have small fiber neuropathy so I know that for myself I have autonomic and sensory issues. Just because someone has one does not necessarily mean they will have the other, but is more likely. The C (small) fibers that are involved innervate both the autonomic and some of the sensory functions of the body. So, both systems can be damaged.

Peripheral neuropathy can also be motor or large fiber neuropathy, so that is why I have leaned towards specifing which system I am refering to (sensory/autonomic).

Thanks everyone for all your great input!!!

[LindaJoy]

I, too, have progressive neuropathy. I now have the stinging sensations, like I'm being stung by little bees all over. Very weird. I also have the burning feet, especially at night, and the heat sensations that go all the way up to my knees. My neurologist says he has no idea why I have it, and that they see people all the time, even those in their twenties, with neuropathy of unknown cause. It is troublesome.

Lindajoy

[Sunfish]

aj -

sorry if my post seemed to imply your not knowing about the different neuropathy classifications/ diagnoses. i didn't/ don't think that at all; my mentioning the terminology was simply b/c over the years on the forum when neuropathy is discussed someone almost always ends up asking for clarification regarding what's what. essentially i was trying to pre-empt the question!

unfortunately i was half asleep watching baseball (go cleveland!) when i posted above so did a rotten job doing so. when i just reread my post i realized that i wasn't at all clear b/c, as you mentioned, small fiber neuropathy is only one of the types of peripheral neuropathy. what i had MEANT to say was that if someone is told they have small fiber neuropathy it means they have peripheral neuropathy; the opposite is not necessarily true, though, as a diagnosis of peripheral neuropathy may or may not mean there is small fiber neuropathy. sorry for any confusion i might have caused anyone!

i'll chime in with my B12 experience later as well; i'm fighting a fever/ headache at the moment but did want to clear up my not-so-clear last post.

melissa

[Poohbear]

I too have small fiber/peripheral neuropathy. My local neuro as well as the research facilities I've been to say this is common with folks like us AND that it's also common for this not to be an issue early on in the illness/syndrome. My neuro says she tends to see this develop over time-- in her practice, on average 8-10 years after POTS symptoms first appear.

I get severe pain from this at times but nothing has worked. Fortunately the pain doesn't usually last for long periods of time for me. I have found that keeping my hands and feet warm all the time seems to help prevent the pain

[Mrs. Burschman]

Goody! Something else to look forward to!

(Sorry, that was not a very good attitude, was it?)

Amy

[MNsue]

I also struggle with sensory loss and weakness. I think they have settled on Chronic Inflammatory Demyelinating Ployneruopathy. It is very hard to diagnose. The call it the chronic sister to Gillain-Barre. It is a constant roller coaster, but the IVIG has kept me stronger. I have a number of other autoimmune disorders that would suggest that the neuropathy and POTS are autoimmune related.

I don't know if that helps. I wish they would do a study on POTS patients with other related neuropathies. I think they are related.

Rhonda.

[LynnMaryVL]

I have small fiber neuropathy as part of my autonomic disorder. My neurologist prescribed Topamax about 8 months ago and it has helped tremedously with the pain, weakness, numbness, and tingling. I had previously tried Neurontin and Lyrica with no results. The neurologist also suggested I take 3,000 mg of Acetyl-L-Carnitine daily which really helps with the fatigue.