Jim's Journey with Sx: 2002-Dec.

[Hunnibfly]

nJim's sx. started sept 2002. First sign weakness right hand while gripping golf club. We are greeters at church and when someone would shake his hand it would almost bring him to his knees. He is a pharmacist and uses a stapler quite often but he was having trouble squeezing the stapler. He would have pain into his elbow. Finally convinced him to see family Dr. in early Dec. initial visit some weakness noted scheduled for MRI and nerve cond. tests. Test was done 12-15-02 results neg. except for some slight mid-line bulging in cervical and thoracic vertebrae. Dr. wanted to refer on to neuro husband did not want to see neuro till further sx. appeared. He was or is under a tremendous amount of stress, we own 3 pharmacies and with all of the gov. regulations it is tough to make ends meet. Fast forward, first week of Jan. right thumb started twitching back and forth. I was totally freaked out. We have a friend that had been dx. with ALS in Oct. I'm thinking the worst. Got the referral , but it was 6 months out, we live close to Branson, Mo the neuro was in Springfield, Mo. Used some clout through a internist that is in the same clinic that was able to get us in 10 days. Prayers were answered. Initial visit You need EMG and nerve cond. tests, and blood work. Blood work borderline low B-12. slightly abn. EMG. Dr. said I totally thought I would tell you that you have ALS but your EMG is not that abn. But you could have really early ALS-not what we anted to hear. Referred us to ST. Louis Barnes Hospital Washington University. Thet review the records from the referring Dr. before they will see you.Called us 3-4-03 wants to see us 3-6-03. Our app. is at 7:30 AM we leave Branson at 3AM. Dr. Lopate assistant professor of neuro at washington medical school. Initial visit does all of the standard strength tests, he looks a little perplexed, says he will be back to talk to us I'm thinking he is going to tell us my husband has ALS. He comes in and says you are telling me you are weak I'm telling you are not. By physical exam you have no signs of MND- Thank GOD. But we do need to repeat your EMG and nerve cond. tests and more blood work-call me in 1 week. They did the EMG and nerve test in the next hour. There was the tech, 2 neuro. residents, and a neurologist. They tell Jim your EMG is completely normal-no signs of MND but you do have carpal tunnel. 20+ years of opening bottles have taken its toll on his ulnar nerve. Dr. calls in one week blood work is ok other tests ok!! ?Why am I still twitching all over BFS?? There is a benign syndrome that is or could be what you have. Came home looked on the internet and that is how I found this page. It has been a comfort. My husbands sx. are described to a tee. I would strongly recommend to stay off the ALS page it will scare you to death. My only concern is why did he have slightly abn. and then comp. normal.. Just a worried spouse. We did go back for follow-up with first neuro he thought Jim was a little old to fit the criteria for BFS Jim is 49. So we see the neuro in St. Louis in Sept. unless other sx. appear. Jim is doing ok still twitching all aver-buttocks, arches of his feet , forearm calves, etc. NO atrophy and just perceived weakness. He comes fatigued very easily. Thanks for this site and thanks in advance for listening to my story. Mindy in Missouri

 

[Longricher]

Thanks for sharing this story

As we all know these symptoms can be very frightening. Please let us know how your husband gets on in September.

Best wishes

Rich

 

[yummylips]

Mindy_

My symptoms are almost identical to your husband's. Some days twitches are almost unnoticable and some days quite bothersome. I have constant small fasics in my calves, shins, hamstrings, and buttocks. They are sometimes so small they almost are undetectable. Other days get quite bad. I have other twitches here, there, and everywhere. No loss of strength or coordination although I "feel" weak and rubbery sometimes. I have seen two doctors both of whom are positive this is benign but they can't explain why it came on or what it is. (Quite frankly, after thinking it was ALS not much else scares me anyway.) There is a lot of comfort in this website-I have been here less than a month but it is the only place I have found with many other people who have exactly the same problem and are otherwise healthy. As you know, if you read only the med sites you get ALS-period, which is one of the LEAST likely diagnoses for this problem (so says my Dr.). I think part of the problem is that many of us know or knew someone who has ALS (a family friend in my case) and it subconciously lodges in the mind that any little abnormality is what he had. Understandable part of the fear factor if you have seen someone go through ALS. Stay in touch. The folks here are most helpful and reassuring. They got me back to rational (from 2 weeks in abject fear) when I discovered the site.

 

[yummylips]

PS-You mentioned your concern about your husband's age. I think any age is susceptible to BFS although a lot of people seem to be under about 45. I am 53 and that's one of the things that originally threw an extra scare into me- right age for ALS, kind of old for BFS but I know several older suffers now and, as I said, my Dr.s are absolutely convinced this is BFS. Maybe Alonzo has some thoughts about the age thing.