Thanks for your comments. The dxd was made first by my g.i. (after checking carcinoid syndrome and doing a barium series) and by the endocrinologist. The peripheral neuropathy was first made by a neurologist at J. Hopkins more than a year ago, but since it was then confined only to the balls of my feet and toes--which I had already had for approx. 4 yrs.--I didn't do any follow up. When it spread first up my right leg and then my left I visited a local neurologist. But she doesn't have the facilities to do all the tests (e.g., tilt table or gastric emptying) so I have scheduled an appt. with a neurologist at Georgetwn Hosp. to confirm autonomic neuropathy.
Did I mention that I also get night-time hot flashes? Since I'm a male, it isn't related to menopause.
Thanks for the Zelnorm tip. Reglan at prescribed doses made me very jittery, dizzy and often induced diarrhea; lower doses did nothing so I gave it up. I'll ask my PCP for some and see how well I tolerate it.
Has anyone heard about effectiveness of S-ame for neuropathies?
I've heard some testimonials on the net that it helps with re-
mylelination but nothing on PubMed. Also, test for Lyme came back negative. Additional comments welcome.
Sorry to hear your symptoms.I have peripheral neuropathy too. I am a fit 20 year old lad, except for this one ailment i have, which the doctors have been unable to diagnose with confidence.
When i turned 18 i developed atrophy in my left hand and over a 6 month period it worsened, and has been the same since. (im 21 now) I did not get any tingling or other sensation probelems. No pain either. A compressed nerve has been ruled out as i have atrophy in the thumb pad and near the ring finger which implies that both ulnar and median nerve are affected. It is really frustrating as my left hand grip is obviously weaker and certain movements have less power.
MRI came back normal. Nerve conduction tests simply showed that there is a problem with the Upper Brachial Plexus-well anyone can figure that out lol.All blood work came back normal too. And all they could say is that "something attacked the roots of my upper brachial plexus and has now gone."
Vil1956,
How were you dxd with autonomic neuropathy? You mentioned your stomach complaints-early satiety/bloating, constipation, etc., which are classic symptoms of gastroparesis. Have you been told you have GP already? If not, you should mention it to your doctor. It can be dxd by a gastric emptying scan. I also have autonomic neuropathy and my GP was dxd by the scan. You said you are taking laxatives for your symptoms. Actually, if they are high-fiber laxatives that might not be a good idea, as a high-fiber diet can worsen the symptoms of GP. If you find out you have it, then there are a few prokinetic drugs-Zelnorm, Reglan, domperidone-that are used to treat it and help empty the stomach quicker, thus relieving symptoms (including constipation-Zelnorm helps me most with that). I have pain/discomfort every day of my life from it, but the drugs do help some. Since a low-fiber diet is unhealthy and I choose not to eat low-fiber, I try to eat a lot of organic soup (buy it and also make my own) and either cook foods down so they are softer, remove peels/skins from fruits/veggies (hard for the body to digest), and chew all food well. I just got a food processor/blender and plan to start using that, especially if my GP gets worse in the future. Also, eating small meals often (4-5 times a day) makes it easier for the stomach to empty food. You metioned having to limit fat intake--that is true for GP, as fat slows down digestion and emptying of the stomach. Forgive me if you already were dxd and know all about this, but if not I hope this has been helpful.
Also, I also have some motor/sensory neuropathy along with my autonomic neuropthy. What do they think the cause of your peripheral/autonomic neuropathy is? There is a lot of blood work that can be done to help pinpoint the cause of autonomic neuropathy, as the causes are diverse and not always primarily neurologic in nature, some more serious than others (amyloidosis, diabetes, scleroderma, paraneoplastic syndromes, etc.). I guess they have ruled out diabetes in your case.