Discussions By Condition: I cannot get a diagnosis.

primary progressive Ms???

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: moparman70440
  • October 4, 2007
  • 03:45 PM

Hello. I am a 43 year old male. 2 yrs ago I started experiencing right side pain that was intense but intermittent. Could not stand still for for than couple minutes or sit in one position long.Dx as skeletal muscle strain. medicine did not help.Eventually moved to the right side also. I have a constant tightness and soreness along abdomen and sides. i also was experiencing constipation. Went through months with gastro dr and found nothing. Laxatives would only work 1 time and then they would quit. Seen a neurologist and he gave me small exam and ruled out anything neuro but prescribed neurontin because of my MS fears since father had MS. After 2 to 4 days my pain levels decreased some, I started walking noticibly better, and I have been having bowel movements again althouth they don't look very healthy at least they are there. I have had small facial twitching and cramping in lower chin as well as cramping in lower legs since I as a kid. I now also have balance problems especially in the dark-failed "sobriety test" given by DR. I have lots of memory and concentration problems. i have been like this every day for 2 yrs. now. I take 4800 mg of neurontin a day yet they can't find anything wrong with me. Lately i seem to be getting back to my pre-neurontin days.Multiple Mri. lumbar puncture,evoked potentials all are normal. Even had a test where they stick needles in your back hooked up to an ultra sound like machine. What can I do.

Reply Flag this Discussion

7 Replies:

  • Look up this phrase in Google (use exact): "hygiene hypothesis" and "Multiple Sclerosis" There are some promising experiments going on about this currently.
    aquila 1263 Replies
    • October 4, 2007
    • 05:57 PM
    • 0
    Flag this Response
  • That's a whole lot of neurontin...how long have you been taking it, and how long did it take you to build up to that level? I had all kinds of weird sensory side effects with it, along with memory and concentration problems, and I was only taking 900 mgs day. It's can be a bear to withdraw from, too. I always knew it was time to take it because my whole body would demand it.
    Anonymous 42789 Replies
    • October 4, 2007
    • 08:01 PM
    • 0
    Flag this Response
  • Thank you Aquila and Fauve for you replies. I will look that up Aquila. For Fauve I've been taking Neurontin since 12/05. i think it took about 3 months to get to 4800 mg/day. Later on that summer i weaned myself off of it so my doctor could see me unmedicated,not that it helped any, but my pain levels greatly increased and i stopped having bowel movements. They don,t want to think that there is a connection between the Neurontin and my bowel movements but i know there is and i think it is a key to finding out what is wrong with me. i sincerely thank you both again. Signed distraught and disillusioned.
    moparman70440 3 Replies
    • October 4, 2007
    • 08:59 PM
    • 0
    Flag this Response
  • Well, definitely affected my intestines, but had the opposite effect. Are you at the max daily dosage now? You have to keep increasing it for it to be effective, so that may be why some of the pre-neurontin symptoms are returning. If you wean yourself off of it and start it up again in a few months, it should start being effective at lower doses. Try to find the lowest dose for pain relief realizing that you'll eventually have to go up. Drug dependency is no fun.
    Anonymous 42789 Replies
    • October 5, 2007
    • 00:28 AM
    • 0
    Flag this Response
  • hello again fauve. I have heard that 4800 is the max dosage. I was constipated for months until the neurontin came along. Seen gastro dr during that time and had multiple test ran and he could find nothing wrong. Laxatives would only work once. Even stuff you have to drink night before colonoscopy couldnt do it. Started going reguarly days after taking neurontin once again leading me to neuro problems. As far as getting off of it i just don't know. Right before i started taking it i could barely walk and the pain was awful. I couldn't even lay down to sleep when I could sleep. I weaned myself off of it last summer and it wasn't pretty. trying to hold on until January. Have appt with Barnes hospital neuro clinic in St. louis. Thanks again and looking forward to hearing from you again.
    moparman70440 3 Replies
    • October 5, 2007
    • 03:47 AM
    • 0
    Flag this Response
  • Have you had a colonoscopy?? They found a bleeding precancerous polyp in me that was >1cm ...after this was removed the constipation prob was solved My polyp was also near the end of my tail bone and caused me some pain and hit some nerves that went to the legs causing them to feel weak as well as give odd fleeting pain..
    Anonymous 42789 Replies
    • October 5, 2007
    • 04:08 AM
    • 0
    Flag this Response
  • gastro dr prescribed different laxatives. Also had ultrasound,colonoscopy and endescope. everything was normal. he suggested a neurologist.
    moparman70440 3 Replies
    • October 5, 2007
    • 05:01 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.