HI,
I am a 25 year old that has been suffering from autonomic and small fiber neuropathy for the last few years. I also suffer from autoimmune disorders and gastroparesis, as well as tmj. My autonomic neuropathy causes me to pass out from low blood pressure and I have injured myself so many times it is not funny. These diseases have controlled my life for too long. It is scary sometimes, as I get so dizzy and light headed I cannot even walk. I have to get IV fluid three times a week just to keep my bp up. Life has not been life for me in a long time... I am just looking for some relief. Anyone suffering like me? Anyone have any success stories... I was just starting some IV IG therapy and I got my first week of treatment and contracted aseptic meningitis... UGHHHH!!!

Mandy

Happy to see you have come to be with us. Just let us know if we can be of any help. Here is a forum with fellow caring members to assist you:

http://neurotalk.psychcentral.com/forum20.html

There are great and caring fellow members here to assist you. Our shoulders are here for support in many ways. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

I too have AI disease (Sjogren's & APS) with severe autonomic neuropathy, gastroparesis, and PN. The only really means of treatment for autonomic dysfunction is to treat each aspect individually. There are several meds for NMH (neurally mediated hypotension), like florinef, midodrine, high salt diet, avoiding caffeine, and always staying hydrated. Even compression stockings can help.

Gastroparesis can be managed sometimes by diet alone. Small mechanically soft meals (grind up meats) and avoiding "raw" fruits, veggies, and nuts. Also avoid eating in the evening to prevent night time symptoms and raise the head of your bed slightly (either with a wedge pillow or the frame itself). If you have significant problems still, there is domperidone (not available in the US, but very easy to get from Canada with a doctor's Rx). It is quite helpful. Stay away from Reglan as it can cause permanent movement disorders.

I have other autonomic dysfunctions: Balance, lack of temp regulation, livedo reticularis, cardiac vasospasms, difficultly urinating, etc. There are many systems that are autonomically controlled.

I also used IVIG for 11 years, then got severe aseptic meningitis in 2006, so will not get it again.

What is your autoimmune disease? What have you been doing so far in regards to treatment for both the AI and the autonomic problems?

Cally
I have been struggling with autoimmune autonomic neuropathy for four years, a few months ago I started ivig, but before that I was bascially bedridden with severe lightheadedness, numerous episodes of syncope daily, extremely low blood pressure, and pain from other autoimmune diseases. I did ten weeks of ivig, the first week I did three days straight, then once a week for the remainder of the time. It was a rough ten weeks to say the least, I got aseptic meningitis 3 times, was extremely fatigued, ect for five days after each infusion, but two days before the next infusion I would feel the best I had in years, and that is what kept me going. After the ten weeks I had the best feeling three weeks in years, and no syncope (as long as I didn't over do it), plus my blood pressure was in the normal range. Unfortunately after those three weeks I started to get worse again and am now at the worst ever. It has now been almost 3 months since last infusion, but thankfully I start ivig again Monday and this time I will do it for three days straight the first week, then once a week for five weeks, and then once a month for a year and then slowly taper in hopes I will never get this bad again. Sorry this is so long winded, my point is that it may be a horrible time during for a few days after the infusions but in my opinion all the pain was completely worth it, I swore I would never do ivig again after aseptic meningitis but each week I kept going knowing that as painful as the side effects can be the results are amazing. I also found that getting iv fluids before, during, and after infusions and drinking as much as possible greatly reduces side effects and didn't get aseptic meningitis since then. Hope this helps, are you going to continue with the ivig? How long will you be getting it? We may be doing it at the same time

Hi en bloc
I am now being tested for sjogrens, as the dr thi ks I have that in addition to the autoimmune autonomic neuropathy. I tried the florief plus many other meds and had reactions to all and that is why only doing ivig. Being you did ivig for 11years I am assuming it helped, if you don't mind me asking are you now doing worse than before you quit. Also why did you stop the ivig after getting aseptic meningitis? Did the dr decided or was it a personal choice? For after I had it the dr gave me the option to quit but said with the paraneoplastic antibodies I have I likely wouldn't get better without it, being we tried so much already.

Yes, I noticed a difference in how I felt after stopping the IVIG. I really didn't realize how much it helped until I stopped. However, my Sjogren's has progressed significantly over the last few years, so I still might have gotten worse even had I continued IVIG. That is a hard call to make.

I'm actually really surprised that you continued to receive infusions after aseptic meningitis. Was it confirmed via LP (spinal tap)? IVIG typically causes whopper headaches lasting a few days post infusion because it crosses the blood/brain barrier. I did have numerous 'headaches' after infusions, but the aseptic meningitis was different and severe. My white cell count in the CSF was over 700 (normal is 0-5). I sometimes wish I could try it again, but my bout of aseptic meningitis bought me 7 days in the hospital and 30 long days of recovery. My neuro won't even consider it again right now.

I'm 53 and I also suffer from small fiber, autonomic and large fiber neuropathy. I fell ill when I was 24 and it took until yesterday to be diagnosed. Doctors didn't believe my symptoms so no one did the testing I needed. Almost everyone said I was a psych case, but testing proved otherwise. I've been practically living on the sofa for the past 25 years and letting life slip through my fingers. Alive, but not living. My neuro prescribed Neurontin, Mestinon, Cymbalta and Alpha-Lipoic acid yesterday. She said she didn't know the cause and probably wouldn't ever. I find this hard to swallow, as I had a strep infection immediately before I became ill. Interesting (scary, actually) that you contracted aseptic meningitis after IVIG. I contracted meningitis 6 years ago for no apparent reason and it was awful. I was hospitalized for 12 days while we were out of state.

Anyway, just wanted to chime in and let you know you're not alone. This illness and the pain that comes with it is like living in . . . well, you know.

All the best to you. I'll keep you in my thoughts and prayers.

Hello Loves Pappilions and WELCOME to NeuroTalk!

Here is the link to our PN Forum

Peripheral Neuropathy
http://neurotalk.psychcentral.com/forum20.html

Please feel free to roam around and join in anywhere!!

If you have and questions, concerns, or just need help finding your way around the board... please, don't hesistate to ask.... someone will always be around shortly to help in anyway that we can.

I look forward to seeing you around the board.

Abbie

Thanks Abbie! I'll jump on over there.

Loves Pappilions,

Happy to see you have come to be with us. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways. Please keep us up to date.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene