Autonomic Neuropathy

[limegreenphysicist]

Hey party people,

I have been taking 20mg steroids twice a day for autonomic neuropathy affecting my blood pressure and body temperature.

Does anyone else have this problem and is it related to my nerves denervating?

If ya do let me know how you monitor it and how you are treated for it.

And Wright if you read this..does 40mg a day of steroids seem a little excessive bc it did to me and its causing extreme nerve pain in my more affected limbs.

Considering going back on Lyrica.

Any thoughts?

Love
Kelly belly

 

[puddin13]

I have hereditary peripheral neuropathy with a component of autonomic neuropathy. What helps me tremendously is alpha lipoic acid. It is routinely given to people diagnosed with neuropathy in Europe but it seems like getting the medical community in the U.S. awake to its value is difficult.

My symptoms were nearly body-wide with both me and my doctor very concerned. We'd heard about alpha lipoic acid so I decided to give it a try. I take the recommended dosage 300 mg. in the morning and 300 mg. in the evening. I get mine from Vitacost by mail as they have the 300 mg. capsules and it is less expensive than I find otherwise.

A few weeks after I started taking it, I noticed a difference. My symptoms were lessening and they finally went down below my knees and the abdominal problems I was having disappeared. I kept taking it and a couple of months later noticed the symptoms coming back. I was discouraged but checked my pill containers. I set mine out in 3 week intervals in the weekly containers. I'd put the alpha lipoic acid in my evening pills but forgot to put it in the morning pills. I'd not had the 300 mg. in the morning for 2 weeks. I immediately put it in and soon my symptoms were gone again.

I don't know what it would do for others but it is worth a try. You do take it with food and if you have an allergy to sulpher, you can't take it as it is a sulpher compound. The body makes alpha lipoic acid but lessens with age. It is a highly active antioxident, helps control blood sugar, helps the liver, and rejuvenates other antioxidents like Vitamin C.

I saw your question in the Google Alerts and felt strongly enough about the subject to go through the hoops in signing up to be able to access the site so I could leave this information. I hope it helps.

I'm President of The Northern California Chapter of The Neuropathy Association. We have nearly 50 support groups in Northern California for people with neuropathy. Your brain and your spinal chord are your Central Nervous System. ALS is in this nerve structure. All the other nerves in your body are peripheral nerves. AMA says that all diseases and disorders in the peripheral nerves is called neuropathy. Among these nerves are sensory, motior, and autonomic nerves. Some people have problems with one of these sets. Others have problems with two or all. With over 100 causes, neuropathy is "the most common disease you've never heard of." We know that in California, the number of people diagnosed and undiagnosed with neuropathy approaches 3 million yet many peope have never heard of it.

 

[limegreenphysicist]

Omg thank you so much for this information. Everything I had read was so vague about it. I have the abdominal problems and all that jazz too. I did not think autonomic problems were apart of multiplex but I guess it could be maybe just not common or maybe my diagnosis is wrong. Who knows..I will try the suggested bc the getting up in the morning and falling over is so bad and the BP going crazy is taking a toll on my body.

Does this have any relation to my skin being all nasty and broke out all the time? I could find a relation in research but you never know what is related until you talk to someone who is dealing with it first hand.

Considering another round of Rocephin bc these symptoms dissipated with the injunction of antibiotics when I was diagnosed with tertiary lymes.

Thank you again.

 

[lydia]

This is very interesting. Would you elaborate on the nature of your abdominal problems?

 

[puddin13]

My abdominal symptoms were symptoms of a urinary tract infection when there wasn't one, not feeling it when there was one, loss of sexual feeling, and various pains at odd times.

 

[limegreenphysicist]

That is almost exactly how I feel. I always feel like I have a UTI and I get pains in my lower ab when there is no rhyme or reason. It makes me nauseous sometimes. I have lost sexual feeling but I think it is more due to depression than anything. I'm so sad and tired all the time. I wish I knew how to shake this. Sometimes I seriously just dont want to live and I hate that feeling.

 

[lydia]

Thank you both for your comments. THAT is not what I thought at all when you mentioned abdominal problems, so I am glad you clarified. LimeGreen-I feel so bad for you, are you being treated for possible depression? With everything you have been going through, it wouldn't be surprising.

 

[limegreenphysicist]

Hey Ms. Lydia,

Yes Im in treatment for my depression. I maybe sick but relieving the depression helps so much. I just know it is frustrating to my new husband bc he remembers me bouncing around happy all the time. I will get there again. I just take my meds and do what they tell me. It just sucks bc if its not one thing its another. But hey I'm not complaining it could be worse and alot have it worse off than I. I'm thankful my progression through this nonsense is incredibly slow and I am much better off than I was this time last year. Hope all is well with you and I appreciate all the information.

Went back for my check up today and my BP has stabilized. They are running yet another Western Blot for Lyme's. They think it has come back. Yuck! I think I will hold some kind of record for the number of WB in 2 years time. This will make my 7th in 2 years. All positive but the last one. Hope its still negative...I'm tired of Rocephin.

I think George (the name I gave my lymes) plays the song "Eye of the Tiger" and gets pumped and attacks me at random.