New Guy - 14 months in, what I have learned

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New Guy - 14 months in, what I have learned

Postby MPLS1969 on October 27th, 2008, 8:23 am


Thank you for this site. It is comforting to be able to read about other folks on the same strange trip to nowhere with this wacky disease.

I am 39, happily married for 14 years, have 2 and 4 year old girls, 2 giant dogs, and good but very stressful job selling medical stuff. I have a VERY strong history of exercising every day. I was a swimmer growing up, and now run every single day. I also lift weights and have quite a bit of muscle on me. I am probably 20 pounds over weight, but I always have been. I drink a tad too much...I have been told by the folks at Mayo that I am an Immoderate Drinker. (not an alcoholic, never had a problem quitting for weeks at a time, but I do like beer and wine).

14 months ago (Aug,2007) my right forearm started twitching - the top part that moves when you lift your hand up or lift your fingers. Within a week or so I began to have twitching randomly around my body. Sometimes it would focus on one spot and go crazy with deeper twitches, other times it was more diffuse and just twitch around, move, twitch, move...etc. I began to feel VERY VERY nervous and obsessed over ALS. Within a month of onset I was sure my legs were weaker. By October of '07 I would notice that my right arm was feeling DEAD when I got home from a business trip...I would carry a very heavy bag with that arm and in the evening it would almost ache with tiredness. (this would just encourage me to feel more scared about ALS). In November I was cooking for Thanksgiving and my right arm would fatigue pretty quickly when I would stir something on the stove or chop onions or something (this still happens now, but it has never progressed past this slight fatigue). In December I began to feel like my breathing was affected. I was SURE my breathing was laboring. I began to obsess over my breathing, I got to the point where I was thinking about every inspiration. (meanwhile I was still running my 3 miles a day). Around Christmas I began to have problems swallowing. I would choke when I drank something and I had a nice lump in my throat all the time.

All along I was still running and lifting. Some of my runs did become quite difficult, basically my "worst or hardest" runs were coming more often (like 2x a week instead of 1x a month). But I was still able to run every day, no matter the difficulty. At the same time my use of xanax was picking up. I had a huge stash of legal xanax that I had been prescribed for anxiety. I began to take it daily. When I would be on the xanax, I was basically fine.

Sometime in November I did go see my Internal Med Doc (he is excellent) he told me it was BFS. He tested me for testosterone and strangely it was very low. He retested and it was more normal but on the lower side.

In January I was SURE my voice was going. I also felt like my shins were getting tired (its called shinsplints folks - they are fine now).

Finally in March I went to Mayo and saw an actual Neurologist (a younger Fellow, and then an older very experienced Neurologist). I was told my checkup was absolutely normal and that I DID NOT have ALS and to go home. They refused to even do an EMG or any tests since they were absolutely sure I did not have ALS. I refused to believe, went to a local Neurologist in Minneapolis. He told me the same thing. I asked him to humor me and order every blood test he could think of, order an MRI and also order and EMG. He ordered them all. Blood Tests (lymes, b12, magnesium, calcium..and about 50 others) all normal, MRI normal, EMG NORMAL!!!. The Neurologist who did the EMG in April 08 told me he has seen a TON of ALS and the minute I walked in he knew I didnt have it. He knew again the minute I took my shirt off. He knew again the minute he stuck me and tested me. I asked him to stick my forearm and he did...NORMAL!!!.

Meanwhile, Mayo switched me from Xanax to Ativan (not my fave). I went to see a Psyc and she switched me to Clonpin (very happy with it). I still take .5 mgs maybe 3 or 4 days a week. I also take Pristique and it seems to help my anxiety and mood too. I am VERY sensitive to other SSRI's but Pristique different and doesnt mess with my eyesight like Paxil and others did.

So where am I today?
1. I twitch all over still
2. I take a bunch of vitamins, minerals and anti-oxidants. - I take 1200 mgs of CoQ10 every day. That is a ton and expensive but somewhere early in my fears of ALS I saw on the Mayo site that they were experementing with CoQ10. So I found out what the max I could take safely, and I take it. I take Magnesium and Calcium. I also take Mangosteen juice and Acai Juice. Both are expensive but they make me feel better, so I take them.
3. I twitch WAY worse after I drink. I should probably quit, but this morning I am twitching and weaker, but I had 6 beers watching football yesterday.
4. My recovery from hard lifting or exercise is still slow - but I DO RECOVER.
5. My twitching after strenuous work is much worse - For instance I laid some carpet in my basement 2 weeks ago and it was 3 days of bad twitching, 3-4 days of more intense weakness/fatigue (or at least the FEELING of weakness)...but again, I have recovered
6. I twitch worse if I don't sleep very well and worse if I am under more intense stress
7. I seem to twitch worse at the change of seasons. I know I am very allergic to mold and I wonder if mold has something to do with this twitching
8. I still obsess over the fatigue in my arms...its really funny because my forearm will feel weak or fatigued, so I am constantly and subconsciously flexing it over and over - NO WONDER IT FEELS EVEN MORE FATIGUED!!
9. If I sleep on my arm wrong and it "falls asleep" it takes quite a while (like a few hours) for it to recover back to normality...much longer than it used to....
10. I am still quite anxious and really need to take the clonazepam some.
11. So? Still anxious, still twitching, but still healthy...such a weird combo. Weird combo for a weird syndrome.

I try to remind myself that I have something going on, but it wont kill me. I feel much better after reading the Mayo study on FBS and visiting this site.

I am seeing a naturapath who is also an MD in the next couple of weeks. I saw him 5 years ago when I was sure I had MS...what did I have? A very high mercury level. We chelated, and I got better. I will be very curious if I am back with the high mercury levels...

OK enough blathering. Thanks all for this wonderful site.
8/07 BFS started in right forearm, spread to body within month
10/7 Weakness/Fatigue/Cramp in right forearm
3/8 Cleared by Mayo Clinic
4/8 Cleared by Mpls Neuro-Clean EMG MRI Blood
12/8 2nd Clean EMG after more arm fatigue
Still twitching, focal fatigue
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New Guy - 14 months in, what I have learned



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