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Just Diagnosed With Autoimmune Autonomic Neuropathy


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#1 sugartwin

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Posted 28 June 2012 - 08:21 PM

This is what my diagnosis was changed to after my autonomic testing earlier this week. I had long been feeling that I was getting worse, but had been brushed off for awhile, so I'm glad I got the opportunity to repeat my testing, starting with an EMG that was abnormal (loss of reflexes, causing ataxia and loss of proprioception) and autonomic testing with QSART, valsalva, tilt, etc.

I just wasn't expecting such grim news. My neuro said that two years ago only my feet had stopped sweating according to the QSART, but now only my upper arm is sweating and only a little bit. He said if he does the testing again next year, I probably won't be sweating at all. I passed out during valsava (but I don't have the prinout of those results.) To my surprise, the only treatment is to "treat the symptoms" according to my neuro.

I'm really considering a second opinion. I hear people talk about courses of IVIG and plasmaphersis after getting such diagnoses, and even though my doctor says he expects me to get worse (to stop sweating altogether!) I just have to let it happen? When I pressed for treatment he said since I had no known antibodies (seronegative) and I wasn't immune deficient there was nothing to do. It was awful. His bedside manner left much to be desired. When I asked when I should get concerned about the severity of my symptoms, he said I didn't have to be concerned, because it wasn't a large fiber neuropathy like Guillan Barre and wasn't fatal.

Isn't there a class where doctors are taught not to say certain things?

#2 sue1234

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Posted 28 June 2012 - 08:27 PM

He sounds like the doctors I've seen!!! They act like there is no use digging deeper for the "why" or trying something to help it.

#3 arizona girl

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Posted 28 June 2012 - 08:33 PM

I'm not sure I'm right on this but I'm pretty sure an abnormal emg does mean large fiber neuropathy. Which means you are showing both large and small fiber neuropathy with the autonomic testing. You may have something called polyneuropathy. If you do have that both plasmaphersis and ivig are fda approved for that condition. I would see if you can find a neuro in your area that specialized in autoimmune neuromuscular disease. They will have ms and polyneuropathy patients and they will offer IVIG infusions as treatment.

Did your doctor do a total quantitative immunoglobulin and igg sub panel on you? Those test are some of the tests that show primary immune disease and it doesn't have to Gu Barre!

I get ivig, it wasn't approved for the small fiber neuropathy, but then we found the immune deficiency and I qualify under that diagnosis, I also had a lot of infections with elevated WBC.

The plasmaphersis though was my first treatment and was approved by insurance for the neuropathy. The treatment also was sort of a test. I improved on the pheresis, which in a round about way proved it was autoimmune. I also now developed several autoimmune disease that show up with the immune defect.

I agree 2nd opinion, find a patient advocate to help you if you can.

#4 lexcyn

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Posted 28 June 2012 - 08:36 PM

This really has me wondering especially about the not sweating thing. I barely sweat at all, I can be in the sun where everyone else has sweat rolling off them and I am chilled with goosebumps. The only place I tend to sweat is on my back a little and behind my knees, is this normal? I have to see a new doc soon so I really appreciate you bringing this up. I pray that you feel better and that you get a doctor that cares more and doesnt just want to give in. Good Luck!

Cynthia

#5 RichGotsPots

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Posted 28 June 2012 - 09:52 PM

I don't know if this will help, but when I did a raw green juice detox, I used a rough skin brush that you can get in your local health store or online. I used it in the shower every day. It really seemed to work. I don't know if it will help a neuropathy but it might take some pressure off your skin so that your body can heel itself. Here is a video of girl demonstrating it

Hope it helps!

#6 sugartwin

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Posted 28 June 2012 - 11:34 PM

Hey arizona girl, I know I had igg drawn two years ago when I had my first round testing done and it was low normal, I think. I have to go through my huge binder o' records. Maybe I should have those done again. And I kept pressing him with the large fiber thing because I had just read the EMG report. He said my EMG was "perfectly normal." I said, "What about the loss of my reflexes?" He said, "some people with small fiber neuropathy lose their reflexes." Which is the exact opposite of everything I've read, which is deep tendon reflexes are present in small fiber neuropathy. It's bothering me. Reflexes are large fibers, which would technically make this a polyneuropathy, like you said. That's what it says on my report "suggestive of peripheral polyneuropathy."

When I referred to my situation as an "autoimmune problem" he said "not a problem, an autoimmune response." What is that supposed to mean? It's not a problem? I felt like the whole appointment was a justification for his inaction, despite what the tests clearly showed.

I'm really tired of all the the hospitalizations, the weight loss, the nausea, the pain, the exhaustion and the nights spent up in fear. And I'm tired of pleading to be taken seriously. Now that I have my hard data I'm taking it and running (to the nearest qualified neuro!) To Sue, yes, I am sick to death of lazy doctor like this one.

Cynthia, thank you for the well wishes. I wish there were something better to do for not sweating besides just staying out of the heat! I've noticed that where I do sweat, I sweat twice as much. To make up, I guess.

Rich, I really appreciate the video. I'm trying to make as many non-medical/lifestyle changes as I can to help myself through this.



#7 Anoj

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Posted 29 June 2012 - 12:48 AM

This may sound like a dumb question, but what are the consequences of not sweating, both immediate & long-term?

And, is this the only consequence of SFN? I am under the impression that the neuropathy is what causes the veins not to work right.

I'm sorry you had a bad experience with the doctor. I think you're right to take the test results and progress on your own. It's very similar to my situation, in which I went to a certain doctor just to get the test results/info, but his treatment leaves something to be desired.

#8 arizona girl

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Posted 29 June 2012 - 02:07 AM

Sugar, There are disease specific igg tests, not to be confused with a total global test. Total quantitative immunoglobulins is the name of the test. It should have an igg, iga and igm level. If you want to read up more on primary immune deficiencies, go to primaryimmune.org. There is a doctor referral program there as well. My first igg test was borderline normal, which means when I had infection on board I was tanking. My 2nd igg test with an infection on board my igg was in the 100 (should be at least 700) range and I had no igm. With IVIG my igg is now high normal and my igm is normal but on the lower end.

If you did have that test and it was normal might not have that, but if it was borderline normal you could ask your doc about doing it again. Do you get frequent infections, run a low grade fever, or feel like your fighting something but don't really run a fever. Those are signs of a weak immune system. My wbc was 20,000 with a ruptured colon and my temp was only 100.2.

It seems though, if I were you I would pursue the polyneuropathy and try to find a neuro that specializes in it. There is a form of it called cidp. If you google that you can read about it and see if it sounds like your symptoms. There are foundations and you may be able to find a doctor using that route. The testing for this is more invasive then what you've describe and includes biopsy's and spinal taps and other blood work. Well you can read about it if you google it. What is important is that this is one of those illnesses that the sooner they start treating it the less the damage progresses.

#9 arizona girl

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Posted 29 June 2012 - 02:35 AM

Anoj, autonomic nerves are small fiber nerves. These nerves are found in every organ or body part that controls you autonomic functions, the nerves in the blood vessels are just one location. So any autonomic function can be abnormal if they find sfn. It explains why some of us don't sweat or sweat to much, why some of digestion issues, have sensory pain, have abnormal moisture functions like dry eyes, gi issues, bladder issues. So you see where I'm going with this, even the heart has autonomic nerves in it.

If you want to read more about this just google autonomic small fiber neuropathy and there are a lot of research articles out there on the web.

#10 issie

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Posted 29 June 2012 - 10:58 AM

Sugartwin, It's good you are starting to get more answers - maybe, some of this will help your pain. Since I have EDS too, and know that pain is a big part of our picture. Anything to help with that would be a welcome relief. I also have low IGG levels at the IGG 1 subset. They are calling it hypogammaglobulinemia. But, have recently come back positive for auto antibodies on a couple of test. I'm trying to sort out what it all means. It seems like it's on the polar opposites - low immunity on one hand and over active and attacking me on the other hand.

arizona girl, I tried to send a PM and you must not have any space left. It wouldn't let it go through.

Issie

#11 arizona girl

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Posted 29 June 2012 - 12:08 PM

Hi, issie. Your right my pm box was full, I deleted some. Maybe that is why I haven't gotten some returned pm's. Though one good thing I noticed you can now reply within the same post repeatedly and it is only considered one pm. So that helps.

My diagnosis is hypogamma too, it's just a pain to type that and the more current name for it cvid, though there is quibbling over that.

FYI, you can have the hypo and hyper states together. A portion of hypo/cviders also have autoimmune diseases. I am an example of that. The doctor is the foremost research on this is Dr. Charlotte cunningham rundle. There are a lot of her studies online if you google them. My rheumy who was from mayo and stanford and trouble getting her mind around that until she did her own research and realized I was right. She actually advised a primary care doc who was following her at my appointment that this could happen. It was interesting to see her reversal. Some times we patients educate the docs.

One of my docs describe the immune system like a circle if it's defective in one area another area will eventually be effected. It needs to be looked at as a global system not as a hyper or hypo state. If it ain't working right it aint working right.

I'm getting ready for company so I may not be online much this week.

#12 jenglynn

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Posted 29 June 2012 - 01:16 PM

Sugar,

I was diagnosed with this in Dec/Jan and I am in the same boat. I cannot find any two doctors from anywhere to give me the same answer. It is so confusing. I spoke with a pathologist a couple months ago and she said that our condition is just a guessing game in the medicial community. She has gone to different conferences about autoimmune or autonomic conditions and without being told that new information has been found- every time there is a complete conflict about several things than the last time. Like Issie, I have low antibodies but mine are IgA and mine is called hypergammaglobulinemia. When I look these things up online I find different possibillities... yet no doctor will listen when I asked to be tested. I have EDS but have been told that it is not related. Yet, my symptoms have failed to improve at all. I have had a couple good days, but I have a list of symptoms that are progressing.

Then I went to a chiropractor who is supposedly a specialist in autonomics. People come from all the world and country to see him. He said my Xrays he has ever seen. My neck has something called reversal of normal cervical lordosis which means my neck has a very bad backward curve meaning it is putting pressure on my nervous system. The spinal fluid isn't flowing through which I could clearly see on the xray and MRI- its just a pool. Well.. this fluids just puts additional pressure on my brain. And this is what the chiropractor says explains the severity and progression of my issues. He actually called me at home and asked me to meet him at his office the next day early in the morning (his last vacation day) because he was watching an interview on the local news that I was in- he could tell by my posture according to him.

It IS so confusing. I have called other nerologists and asked them about that theory (ones I've seen) and they say is it "crazy" to put it nicely. Yet they haven't given me anything other than IVIG which my body rejected and violently so and almost killed me. At some point we just wonder what to do?????? All I know is I am getting worse. I did see another chiro- just for xrays to see what he said- He did have the exact same diagnosis as the first one. They both told me with the pressure on my brain is causing the problems and mine is so bad that I had less than 4-6 months to live. I can't even process that because I can't even process if THEY know what they are talking about.

I am just so frustrated, like all of you. CLEAR answers. It just makes me feel as if there is no one to trust and WHY I should listen to. I have an appt. with Dr Chelimsky in Sept... I guess at this point, I feel as if he is a viable source to listen to.

I am so sorry I am not the only one who is going through this struggle. It breaks my heart.

Jen

#13 issie

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Posted 29 June 2012 - 01:28 PM

Jen,

Have you looked at Dr. Driscoll's idea about using Diomox to get the fluid in and around the brain to drain better? I wonder if that would help you. You can get her 2nd book on Kindle or download it to your computer. Might be worth taking a look at.

Issie

#14 jenglynn

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Posted 29 June 2012 - 02:41 PM

Thanks Issie! I will do that! Hopefully it will educate me. I had no idea I had this "issue". Is it actually serious? If so, why don't our neuros do any of the xrays etc?

#15 issie

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Posted 29 June 2012 - 04:23 PM

Yes, it can be serious, from what I've read. Dr. Driscoll thinks that especially with us with EDS - there can be too much fluid and it pushes our brains down from the top to cause our brains to sit down on the brain stem and cause issues. Because of too much fluid - and things not draining properly - she feels this is a big issue with the reason some of us have autonomic dysfunction - especially with EDS. I'm trying to get my doc to let me try it. Sometimes, I have a lot of pressure in my head and I've told my hubby it feels like it needs to be massed and pressure relieved. I've been saying this for years---way before this Doc. came up with this idea. Sometimes, it does feel like there may be too much fluid causing the pressure. If you could get the fluid to move - seems like it would take some pressure off and maybe help with the dysfunction. I found her 2nd book to have almost all the info that the 1st one had and it will give you the info you need about it.

Issie