sugartwin

Just Diagnosed With Autoimmune Autonomic Neuropathy

23 posts in this topic

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?

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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.

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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.

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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

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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!

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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.

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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.

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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.

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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.

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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

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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.

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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

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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

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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?

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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

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Dr. Chelimsky was my old neurologist and I can't say how I wish this testing had been done on his watch. I know he would have a more satisfying explanation than the one I just got. If you haven't seen Dr. Chelimsky before he's absolutely wonderful. He listens. He's considerate. I wish they were all like him.

Also, Jen, I think issie is onto something with the Driscoll theory. If you haven't read it yet, you definitely should. It reminds me of what your chiropractor is theorizing about; spinal fluid trapped and unable to drain. I don't know if that's the case for me or not. I have reversal of the cervical lordosis (I think it is really common in EDS) but mine is not very severe.

I almost never get sick, so I think my neuro is right on the count that I don't have immune deficiency. I get sick even less often than most people. I had a cold last March and I didn't get sick at all the year before that. I just don't catch things at all. I think maybe it might lend support to the idea that my immune system is in "overdrive." Right after my cold I had a huge flare of symptoms.

Thanks for the info, arizona girl! All the variants of CIDP I read about have some sort of motor involvement, which I don't have. I hope to find a neurologist through their forums and boards. The testing you mentioned...spinal taps and biopsies, I wonder if it could be helpful in determining a course of action.

issie, if I can manage to get this treated successfully, it would be wonderful if it took some of the pain with it. I've lost so much muscle from being sick that the pain of my loose joints is really bad. It's a vicious circle. Muscle loss, pain, inactivity, muscle loss, pain, etc.

I've felt really sick, scared and alone for the past few months. If nothing else, I finally know WHY this is happening to me.

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This is just a quick message because I know its awful when you get scared and so sick and it never seems to end. Eating becomes so hard but you have to do it.

Have you heard of Elemental 028 drinks?

They give them to people with Crohns mostly but i find them a great way to keep all your vitamins and mineral intake up.

When you feel so sick you just cant eat at times and these are great then.

Will post a topic and link on them, Sure they sell all over the world too.

http://www.nutricia-elemental.co.uk/

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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.

You talk as if that has been established.

That kind of onset does support an autoimmune etiology as a possibility, IVIG would certainly be something to look at.

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.

'

mmm... You know that small fibres are quite sensitive and can be effected by blood flow variations. It is still quite possible that small fibre neuropathies could be a manifestation of reduced cutaneous blood flow as an example rather than a cause.

Most sympathetic innervation is not small fibre - rather vasomotor, alpha 1 receptors and innervation of the heart, etc.

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Yes, your right rama. I have small fiber damage shown by biopsy, but what caused the damage? The same question as in what is causing the pots symptoms. There are so many conditions that can or could cause these symptoms and damage. With all the autoimmune documentation I have and the fact that I responded well to pheresis which pulls the antibodies out of the blood. I believe mine is being caused by an autoimmune/immune defect. I also have a hyper response with a significant rise in norepi on standing, but I also have mild elevations and supine epi and no measureable dopamine. It will be interesting to see where the research goes on all of this. Grubb's review gave pause for thought on direction.

Did you see how well the four patients on adderall did?

If you could explain more what you meant below, I'd love it?

"Most sympathetic innervation is not small fibre - rather vasomotor, alpha 1 receptors and innervation of the heart, etc."

I think I did have the net test done and mine was negative.

Rama, by the way I'm happy to report I'm having significant improvement with the addition of synthroid and plaquinel for the related autoimmune diseases, to my ivig routine. My BP/HR have been so normal of late, though I did have one episode of near syncope after a very stressful day and after having a glass of wine. Oh Vey! That has happened in a long time.

So, I'm hopeful, again to soon to know if there will be continued improvement. Are you treating the autoimmune ank yet?

Good to see you posting again.

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@issie I do think the autoimmune/low immune is caused by each other and go hand in hand. Autoimmune means the immune system is attacking itself. That attack could be causing the igG weakness, I couldn't really find causes for it otherwise. Or maybe the opposite the immune being lowered can make the autoimmune thing activated....

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If autoimmunity was that simple someone would have worked it out 60 years ago. the body doesnt just attack itself it attacks specific sights of the body, perhaps areas that contain histocompatibility self-antigens that mimic those from an infection but the science is now focusing squarely on genes.

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Since I have had genetic testing done and have seen markers indicating MCAS, EDS and some markers for POTS. I do know I have markers for some autoimmune illnesses too. The things that doctors have pain-stakingly been figuring out with me ---nearly all of them showed up with my genetic markers. That being said, just because you have the genes for a certain illness ---doesn't mean that it will get turned on and you will get everything that you genetically are predisposed for. For example: We all could get cancer, but not everyone will. Something turns on the genes that cause cancer to start in your body. Same with the results of genetic testing. (I mention this because I know some are starting to have their genetics tested and you may find some really horrible things come back as a possibility. Keep in mind, it doesn't mean you will get it. But, you could. So, we can work on those things and try to improve things with our diet, lifestyle, etc. and hopefully we won't have those genes turn on.) Okay, but, if they do turn on, there is also a study called epigenetics ---meaning----if you can turn on something, maybe you can turn it off. There are studies going on now to try to figure some of these things out. Science is advancing and maybe there will be some answers for us soon. I'm hoping it's in my life time. Cause, I have some bad genetics and unfortunately ---some of mine are turned on.

Issie

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