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Autonomic neuropathy, autoimmune disease - help!

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Old 01-16-2012, 05:25 PM   #11
whitechinacat
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Well, the new neurologist had a cancellation today so I got to see him right away.

It was a good appointment. I am used to walking away from appointments with my family doctor or rheumatologist feeling that I've learned nothing and have no plan for moving forward. It's frustrating to say the least. The neurologist listened to my history and did a neuro exam. The only abnormality there is that my knee reflexes are quite uneven, but he said he wasn't sure why. He said that my story is quite complex and he can't think of any particular neurological disease that would account for my symptoms, but he is willing to investigate and try to help me feel better. That's a wonderful thing to hear! He admitted that it would be sort of a fishing expedition, but he was willing to cast a wide net and see what he could find.

I am having my MRI of brain and spine repeated (it's been a year) to see if there have been any changes. Depending what it looks like he may also redo the NCV/EMG at a later point. He also wants me to do a sleep study and to wear a holter monitor (because of the palpitations/fainting).

I am going to try Lyrica as well starting at 75 mg at bedtime and then 75mg twice a day. I am quite interested to see if it will make a difference.

I'm just relieved to have some direction here.
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Old 10-31-2013, 12:50 AM   #12
dsouthen
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Hi My name is Danielle and i know it was last year that you wrote this blog but i was wondering if you can help me. My daughter who is 14years old has been experiencing the same symptoms that you describe. Unfortunately it has got so bad she now has a feeding tube and often needs to use a wheel chair to move around. She also has a nodule on right side of thyroid too that has not as yet been removed.
Reading your post i am wondering if you have any more answers to your condition or if you have found out anything that may help with your symptoms. My daughter is using a drug called mestinon which is the only thing that has given a bit of relief. I would really appreciate it if you could email me and give me an update on your progress.
I hope you are doing well and look forward to hearing from you.
Danielle






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Originally Posted by whitechinacat View Post
Well, the new neurologist had a cancellation today so I got to see him right away.

It was a good appointment. I am used to walking away from appointments with my family doctor or rheumatologist feeling that I've learned nothing and have no plan for moving forward. It's frustrating to say the least. The neurologist listened to my history and did a neuro exam. The only abnormality there is that my knee reflexes are quite uneven, but he said he wasn't sure why. He said that my story is quite complex and he can't think of any particular neurological disease that would account for my symptoms, but he is willing to investigate and try to help me feel better. That's a wonderful thing to hear! He admitted that it would be sort of a fishing expedition, but he was willing to cast a wide net and see what he could find.

I am having my MRI of brain and spine repeated (it's been a year) to see if there have been any changes. Depending what it looks like he may also redo the NCV/EMG at a later point. He also wants me to do a sleep study and to wear a holter monitor (because of the palpitations/fainting).

I am going to try Lyrica as well starting at 75 mg at bedtime and then 75mg twice a day. I am quite interested to see if it will make a difference.

I'm just relieved to have some direction here.
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Old 10-31-2013, 04:31 PM   #13
echoes long ago
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Danielle, whitechinacat hasnt been here since may of 2012. try sending her a message, maybe she will get notification if her email is the same.
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Old 11-02-2013, 04:26 PM   #14
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Originally Posted by whitechinacat View Post
Hello! I've been reading through past threads and finding some very useful information. I wanted to introduce myself and ask a couple questions...

I'm a 30 year old woman with a mystery autoimmune disease. The only thing I've been diagnosed with is small fiber peripheral neuropathy and it's definitely my most bothersome condition/symptom. I know it is caused by an underlying disease process, but no one can figure out what that is so it isn't currently being treated. I am seeing my neurologist again on Feb 24 and would like to have some intelligent questions to ask him. I like the neurologist and he is willing to investigate my symptoms, but when my bloodwork showed a positive ANA (indicating autoimmune disease) he passed me on to the rheumatology department and I only see him every 6 months or so.

I'll try to be brief with my history, but there's a lot to say! I was healthy until 2 years ago when I was pregnant with my daughter. At first I noticed some patches of tingling on my back that would come and go, as well as the odd sensation of water washing over my skin. Then I started getting heart palpitations and bouts of lightheadness and vertigo. Then bouts of diarrhea that would be preceded by intense tingling in my legs and a feeling of being very cold and shaky. One day I had an episode where I couldn't think clearly or put the words together to speak, then I got tingling on one side of my face and one arm, and both legs. I felt weak and tired and strange. The only reason I didn't go to the ER was because these are like the aura symptoms I'd had before with a migraine and I assumed that was happening again. This time I never got a headache, but the symptoms disappeared after about 3-4 hours. I saw my doctor who ran tests to rule out a TIA. The MRI of my brain, EKG, echo, and bloodwork were all normal so she said it probably was an atypical migraine.

After my daughter was born I felt great for about 3 months, then I crashed. One day I was using a pair of scissors and my thumb went numb and didn't recover for MONTHS. I started getting more episodes of tingling, especially in my feet and lower legs. More dizziness, bouts of diarrhea with leg tingling and shivering, and migraines (left side headache plus tingling in my face and blurry vision). It got worse and worse until I ended up visiting the ER thinking I was having a stroke or something. However, all the symptoms come and go and generally don't last more than a few hours at a time (though they will return later). The weather was becoming colder at this time and I also started to notice that my feet were not just tingling and numb but also felt very cold to the touch and were a grey colour with blotches of black, white, or purple. I also suddenly started getting bad heartburn (GERD) and mild swelling in my hands and feet in the mornings.

I saw a neurologist who requested another MRI of my brain and the whole spine. It was normal. He also did an EEG which was normal. The tests he did to see if I could sense vibration and temperature in my legs were abnormal and he told me that I had polyneuropathy. I had a NCV/EMG which was normal. He ran a lot of bloodwork and discovered the positive ANA (1:640 speckled) along with low ferritin and pre-diabetic blood sugar levels (A1c of 6.1 but I passed the 3-hour GTT). I was referred to a rheumatologist.

That was a year ago and I still have no answers. I take Nexium for heartburn, but no other medications. I take an iron supplement but my ferritin is not increasing. I also take a multivitamin, vitamin D, B6 & B12 & Folate, and fish oil.

Interestingly, over the summer months my neuropathy all but vanished. I felt sure that this meant that the neuropathy was caused by lack of blood flow to the nerves since cold weather causes my blood vessels to spasm closed and warm weather allows them to remain open, but perhaps there is another explanation. From May to September I had NO tingling except the odd bit in my face along with a headache and I felt much less fatigued. I had none of the episodes of tingling, weakness, dizziness, diarrhea, extreme cold sensations, etc. either. In October on the first cold day of the year, it all came back. The GERD, hand/foot swelling, palpitations, and some muscle pain and stiffness did not go away over the summer.

Sorry this is so long! To wrap up, my rheumatologist has no idea what I have. She's run all the antibodies for the connective tissue diseases and come up with nothing twice. My ESR/CRP have always been normal. I've been tested for liver/kidney function, thyroid disease, cryoglobulins, and lots more. All negative. This winter I've had a lot of muscle pain (like the flu), muscle spasms in my calves at night, lots of tingling and numbness all over, intense dryness and pressure in my sinuses and behind my eyes, plus the dizziness/tingling/diarrhea episodes. My rheumatologist speculated that I may have autonomic neuropathy because of these episodes as well as my heart palpitations and low pressure and feeling cold all the time. I've been referred to a gastroenterologist to investigate the chronic diarrhea. I've also been referred to an endocrinologist because I have PCOS (polycystic ovary syndrome) and had thyroid surgery years ago - the function has always appeared normal, but I only have half of the gland.

Anyway, that's what's going on with me! Some days I feel okay and can function pretty normally (though I never feel completely normal) and others I am just miserable, scared, and feel like I can't go on like this any longer. Any suggestions on what to ask the neurologist? Testing? Should I ask him to try one of the neuropathy drugs I've heard about like Gabapentin or Neurontin? Cymbalta? Lyrica? I know that treating the underlying condition is most important, but since no one knows what it is...

Thanks!

I just had to respond about the similarities I see in our situations. I recently posted i was in Europe over the summer and had a remission in my PN during summer months, and it came back when I returned to Sydney and it was cold. I too have a family history of Hashimotos but I was formally diagnosed hyper in 2008. I have a positive ANA and low iron and low Vit. D. I often have to take a hot bath to warm up and this past winter have had episodes where I can't warmup and it was worrisome. A feeling of cold/ numbness that moves around is/ was also a symptom of mine and I have days where I am perfectly fine and others where I feel terrible. These past 2 years i have to had unusual viruses without fevers where the main symptom was muscle pain. I am also affected by temperature changes and get migraines frequently (especially on humid days). I see my neuro soon and I need o mention the remission over my summer holiday. I too think my thyroid is/was involved.

Sorry to hear about all your issues but the similarities were uncanny. Personally I think that autoimmunity is environmental and probably unavoidable. Thyroid problems are rampant and thyroid is very sensitive o environmental stress. It could be all the pesticides,herbicides,GMO food, petrochemicals in cosmetics,air pollution, 2nd hand smoke,X-rays, mercury fillings,toxic prescriptions, antibiotics and last but not least nuclear disasters such as Chernobyl.

Don't be too hard on yourself during your quest for answers. We live in a toxic world and by no means did our grandparents grow up in this type of environment.

Last edited by Aussie99; 11-02-2013 at 04:54 PM.
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Old 11-02-2013, 11:29 PM   #15
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whitechinacat, Maybe you will not see this, but that sounds scary. I hope you get something figured out soon. Maybe this is some kind of food sensitivity. I know I keep mentioning this book, but it is a good one--Foods That Fight Pain has some great info on foods that trigger various ailments such as migraines, joint pain, digestive problems, & fibromyalgia. For example he lists the common triggers for migraine, in order of importance: dairy products, chocolate, eggs, citrus fruits, meat, wheat (bread, pasta, etc.), nuts, tomatoes, onions, corn, apples, bananas.
Ron
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