Results 1 to 9 of 9

Thread: Return of Symptoms after 3 Years

  1. #1

    Default Return of Symptoms after 3 Years

    Hello All,

    I have returned to this forum again to seek some advice for an old issue that has unfortunately has returned after 2-3 years. Just to give you some back ground (this is the short version). This started 10 years ago as what has been describe as a "Post Viral Event". At that time I had high CPK levels and rapid muscle weakness. All which subsided within days. Everything returned to normal except I started having Muscle Twitching (all over) and pain in my feet with stiffness. Walking and standing made it worse. I went through several months of tests (blood work that checked for metabolic levels and inflammation) EMGs etc. So many tests I cant remember. I saw a Nero Muscular Specialist for about 3-4 years and did follow up. Nothing really got worse and the symptoms came back now and then. About 3 years ago they went away completely. I still suffer some foot pain now and then from lots of standing or walking and the twitching in my calves is 24/7. About 6-7 weeks ago I starting getting the twitching all over and the pain/stiffness returned to my feet and lower legs. Some days are pretty good and some are worse. Has anyone out there had anything like this? I mean years later this comes back again? I really don't want to go back through all the testing again. Seems like something is causing this, but it remains a mystery. Any help would be appreciated.

    Thanks!

    Dave

  2. The following 2 users say "thanks"


  3. #2

    Default

    Also could this just be BFS or Neuromyotonia?

  4. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,964
    Blog Entries
    1

    Default

    ((((((DBchip))))))

    Back to BrainTalk!

    I'm so sorry that your symptoms have returned. Have you had an MRI?

    Is it possible that the viral infection, which prompted your initial symptoms, could have been laying dormant for the past 3 years?

    Are you consulting a neurologist or other specialist right now?

    Unfortunately, I cannot help you or answer your questions. I hope others will see your post and offer suggestions or insight,

    In the meantime, perhaps you should consult physicians to explore the possibility of a recurrence of your virus or your symptoms. I know that you don't want to go through the testing again. That is completely understandable. But you may have to do that to get the answers you need to diagnose and treat your symptoms. Your previous test results can be compared to your current test results, which might lead to a clue about your condition.

    Please return to let us know what your plan is and how your are feeling.

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #4

    Default

    Still having symptoms. Basically 2 things going on body wide twitching (24/7 in calves) and pain on the bottom of my feet. Feels like nerve pain and is aggravated when standing or walking a lot. Going back to the Neuro when they can fit me in.
    Anyone have the same problem and history like me??

  6. #5

    Default

    I think I have same problem but mine come back after about 6 months, and I only feel the pain while walking. I dont know if I can find some answers here, I may have to consult a specialist

  7. #6

    Default

    How long have you had your problem? I went through a ton on tests and went to a Nero Muscular Specialist. Normal EMG and things went away for several years only to return a few month months back. Is your foot pain relieved by rest? Some days I have a real hard time standing and walking for long time. When the twitching is going on I have the pain. When the twitching slows down the pain goes away. Those are my only two symptoms. What has your doctors told you?

  8. #7

    Default

    How long have you had your problems? What have your doctors told you? I was seeing a Nero Muscular Specialist at a top teaching hospital for a few years. Normal EMG and other tests. When the twitching increases I get more foot pain. Some day standing and walking hurts. I don't think this is nerve pain since I get relief from taking off my shoes and resting. Are you taking anything for your foot pain? What is your story on your condition?

  9. #8

    Default

    Quote Originally Posted by DBchip View Post
    This quote is hidden because you are ignoring this member. Show Quote
    How long have you had your problem? I went through a ton on tests and went to a Nero Muscular Specialist. Normal EMG and things went away for several years only to return a few month months back. Is your foot pain relieved by rest? Some days I have a real hard time standing and walking for long time. When the twitching is going on I have the pain. When the twitching slows down the pain goes away. Those are my only two symptoms. What has your doctors told you?
    Good idea, Chip

  10. #9

    Default

    I have actually joined the forum.for support re an aneurysm but noticed this post. I have a form of neuromytonia called issacs disease which is rare and have had it for 20 years. Your symptoms are very similar and familiar to me- it took me 3 years to get a diagnosis and you really do need to see someone from a specialist neuro centre. On Facebook there is a closed group called the issacs and neuromytonia group. Everybody twitches on there, the group is very supportive and you get some great advice. Of course you need a diagnosis but people can help you find a way of achieving this. I have twitches, weakness in the lower limbs and fatigue. Please have a look at the group and you will find you are not alone with your symptoms

Similar Threads

  1. I haven't slept properly for years & years!!
    By Catherine2202 in forum Sleep Disorders
    Replies: 1
    Last Post: 12-22-2013, 07:44 PM
  2. Return to Forever
    By hoban in forum Spinal Disorders
    Replies: 19
    Last Post: 08-31-2012, 07:35 AM
  3. Replies: 6
    Last Post: 03-05-2012, 12:10 PM
  4. Could we face the return of CJD? Experts fear it may lie dormant in thousands
    By flatfish in forum Creutzfeldt Jakobs Disease (CJD)
    Replies: 0
    Last Post: 11-01-2011, 12:30 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.