I am a 27 year old male, 13 months ago I had what I believe was a stomach virus which I was never able to recover from. I felt a little better for a day or two but then kept getting worse over the next number of weeks. After seeing many drs and specialists and undergoing many tests (mris of brain and abdomen, stomach emptying test, endoscopy) which were all normal,and one test which was abnormal (gastric accommodation scan) I was told I had post-viral nerve damage to the gut and that I would improve but it would take about a year. It felt from the beginning that it was more than just my gut that was affected (head,lower back etc..) I still am unable to function and was wondering how I can be sure that the post viral nerve damage I suffered occurred in the pns and not the central nervous system? Does the fact that the mri of my brain was normal mean that there was no nerve damage to nerves in the central nervous system? I am confused because the mri of my abdomen was unable to detect the nerve damage to the gut that I am suffering from. How can I be sure that whatever nerves were damaged will eventually heal and are not permanently damaged? Any other information you may have that relates to my condition would be appreciated.
If your brain and spinal cord are normal as per the MRI then there is no central nervous system involvement. MRI of the abdomen will not pickup nerve damage in that area and can be normal. Do you have the gastric accommodation scan report with you - if so, you can type the result over here which i can review. Were you diagnosed with gastroparesis?
My accomodation was limited but my transit time through the stomach was good. I was not diagnosed with gastroparesis, although that was the initial suspicion.
The nausea has not lessened, even for a day, in over a year. If the nerves were damaged from a virus,how can I know that they will eventually heal? Is there a chance this is the way it will be for me for the rest of my life?
If your transit time was ok and accomodation is limited then this is not a nerve problem and you may want to talk this over with your doctor again.
That's so odd because all they said was that it was nerve damage from the virus and would take a year or so to improve. Said the myelin sheath had probably been stripped off the nerves by the virus. After that it was just wait and see and take disipramine tofeel better ( it made me sicker).
You better seek a second opinion from another gastroenterologist. I think I had chatted with you in the past regarding carcinoid syndrome right?
Yes, than you. You did and I had the H15AA urine test done. I suppose the reason they suspected post viral dyspepsia (seems like such a gentle name for such a terrible illness) is that I was fine one day and sick the next after getting a 24 hour bug.
The Mayo doesn't want to see me now since my student insurance was cancelled by United Healthcare and the ER will just give mefluids but will not run further scans since there is no longer insurance, as of sept 2010.
You have been so helpful and I hope I can find a way to get further tests done here. Since that seems next to impossible, I have beensearching for any information to give me hope that I may heal someday.
I wish all good things and blessings to you and your family for the service you have provided me here.
Hi John! You are right about the generic term post viral dyspepsia and you have so many other nongastric symptoms that I won't give this restricted diagnosis. I know it is difficult to get so many tests but did you get octreoscan?
No. No one will do it for me without insurance. The Mayo clinic asked me for a check for $4000 upfront to do more testing but I have no ability to do that. I put in an application for care as a "charity" patient but was turned down.
The thing is, I only had the gastric symptoms from last October 2009 through March of 2010. Then the lip swelling, the swelling and skin peeling on my penis and the neurological symptoms hit. The doctors say it could have been a reaction to the desipramine and that I now have acute /prolonged symptoms because they stopped the drugs very suddenly. I was always told to just wait and see if I improve and now that I have no insurance, I can not afford new testing. Quite a bind, isn't it?
By the way, I had the third serotonin level done, as you requested and it had gone up anotehr 20 points to 380. I was also charged over $500 for the test since I had no insurance. I mention this only to show just how crazy it is for people without insurnace. I applied for Medicaid andwas turned down since I had received and still had the proceeds of my student loan for the last semester of Law School I was unable to attend. If it wasn't so sad, I'd have to laugh at it somehow.
I am sorry to hear this John. This is really tough on you. Here is the cheapest way to go about it for time being. See if a medical doctor can write you a script for cyproheptadine and see if your symptoms subside. That itself will be diagnostic part of it. Once your insurance situation is back on track then you can proceed with further workup.
Expert in various areas of Neurology