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Old 07-21-2009, 10:57 AM   #1 (permalink)
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Hi all,

Are there pals who had (muscle) pains - (not cramp pains) as one of the first symptoms.
I've been twitching (& minor cramping ) widespread for 21 months now, however twitches increase in back and arms.
Right arm is hurting (in pain) all the time for 2 months now. Sometimes it's my forearm that's hurting, then my shoulder, then my bicep. Very odd but disturbing pain.
Also at times it seems like my grib is less and seem to drop things more. No tingling stuff like with C/P.

I had clean EMG's in the first 7 weeks of twitching, followed by a couple of clinicals at 2 different neuro's (MND). I emailed my neuro about the pains and he made an appointment on the 18th August. I'm really scared he thinks something is wrong and want to see me again.

Any guesses?

Thanks

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Old 07-21-2009, 01:41 PM   #2 (permalink)
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Bart, I think it's natural that if you contact your neuro telling him of new symptoms, he would make an appointment to see you and find out what's bothering you! That's a lot better than him ignoring your e-mail, right?

I'm not qualified to guess what's going on (by definition, anyone who's "guessing" isn't qualified), but that certainly doesn't sound like ALS.

Good luck. Be thankful you've got a responsive neuro.
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Old 07-21-2009, 03:41 PM   #3 (permalink)
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Thank you Beth
I had an app. with my neuro on 28th August but when I emailed my 'new symptoms' he rescheduled it to an earlier date and that's why I'm worrying.
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Old 07-21-2009, 04:30 PM   #4 (permalink)
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Bart,

Maybe your neuro is just curious about this new symptom. Maybe it is giving him a direction other than MND! Maybe he is anxious to give you an "all clear"! Wouldn't that be nice?

Zaphoon
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Old 07-21-2009, 05:31 PM   #5 (permalink)
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Hi, Bart,

I wouldn't try to read too much into the neuro calling you with an earlier appt. maybe they just had a cancellation? My neuro visit was suddenly rescheduled for that reason. it's best not to read too much into anything, really. after the EMG, my neurologist declined to tell me the results immediately and he limited the test to only three limbs. When I asked why he wasn't testing the weaker arm, he said "I have enough information." I took both of these things to mean that the EMG was abnormal and I had ALS. It caused me a lot of stress and anxiety while I waited more than a week for the results. Ultimately, the EMG was clean and the neurologist does not think I have ALS, but said I may have a neurological condition which he cannot yet identify. he also suggested the possibility of a virus, which sounds a bit cockamamie to me. he is taking a wait and watch approach.

I still have a lot of troubling symptoms- mild atrophy of hands and forearms, muscle twitching, muscle weakness, bouts of increased saliva, and muscle pain, so that's why I am continuing to post in this part of the forum.

I just wanted to tell you that I don't think you can try to "read between the lines." It will just drive you crazy.

Good luck,

Sandra
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Old 07-21-2009, 07:02 PM   #6 (permalink)
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Hi Sandra,

Thanks for your answer.
Indeed the "reading between the lines" drives me crazy.

In June I went to my neuro (professor in MND) again and told him of my hand cramping. He did a clinical and tested my arm reflexes. He tested my left arm and then my right arm.. .he looked weird and tested my left again. To me it seemed that my right arm (where the pain is) had a very brisk reflex. That sort of things get me and I start wondering if maybe he noticed something wrong but doesn't dare to tell me because I have been to him maybe 5 or 6 times and he always says I have BCFS. I also wrote him an email explaining the pain in my arm that came there after the app. He didn't answer it.

Ofcourse this got me even thinking more so I made an appointment with my other neuro (yes I know if got 2 of them :- )) , set 28the August. I then wrote him an email with my pain symptoms and asked if this could be ALS and hoped if he could tell me something because my app. was still far away. He replied to me that 'severe muscle pain doens't fit the classic ALS-onset' but that he rescheduled the date to the 18th. I have to say that I also have been to this neuro a couple of times (his team did an EMG on me in my 2nd month of twitching).

Now ofcourse I'm wondering if 2 ALS specialists could have misdiagnosed me or if my symptoms were not strong enough to detect.
My body is acting so weird that I really have convinced myself this is ALS. I twitch non stop in my calves and random more and more. I got this really weird constant - ?vibrating-buzzing-twitching ? thing going on in my back and arm and chest. My pink feels crampy (but they doesn't contract), I got crampy feelings in my hand off and on. Pain in right wrist, hand, forearm, bicep and shoulder - severe at times, sometimes sharp pains. I'm also suffering from insomnia the last month.
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Old 07-21-2009, 07:33 PM   #7 (permalink)
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HI Bart,

Dude , you are second guessing your second guesses !

Sit down , close your eyes , that buzzing you are feeling is three naked masseuses rubbing oil all over your body. Smell the flower scents in their hair. Relax !

It could as simple as he had a spot open up , and as you were talking the loudest (sent an email) you got the spot.

Until then , find some sun , have a beer or two , HELL , find those masseuses .

You dont want to burn out before your appointment do ya ?

Glen
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Old 07-21-2009, 09:56 PM   #8 (permalink)
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Twice I have had doctors reschedule my appts well in advance, both to earlier appts. Both had to do with them leaving town for something or other and absolutely nothing to do with their concern for me personally. It was about professionalism and rescheduling everyone...so who knows? I hope time flies for you while you wait, it is clear you are stressed over it.

Lydia
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Old 07-21-2009, 09:58 PM   #9 (permalink)
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I've had them move appts up for me but they had cancellations to fill. There was one time when my swallowing became troubled and an opening was made for me.

PZ
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Old 07-22-2009, 01:16 PM   #10 (permalink)
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thanks for your answers

I went back to my GP today for the arm pain. He did some clinical tests and said he doesn't think it's C/P, tennis elbow or something in shoulder like a pinched nerve.
He doesn't have a clue of what's causing the pain. Ofcourse in my eyes it seems like regular things are getting of the list
I asked him to test my reflexes, he said he thinks they were normal. At this moment the pain is 70 % better after taking some pain meds ( I guess)

I discussed the possibility with him about ALS but he said it would be very strange that 2 MND neuro's (professors) would give me a wrong diagnosed and that after 21 months of widespread twitching there would be some weakness that is detectable.

Any thoughts?

best regards
Bart
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Old 07-22-2009, 02:58 PM   #11 (permalink)
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Oh Bart,
i am in the 5th month of twitching...you are in month 21.... May I change with you to rule out ALS?
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Old 07-22-2009, 03:52 PM   #12 (permalink)
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hi Tim,

You got a clean EMG in 4th month of twitching, so you don't have als (mine were all within 2 months of twitching)
It's not the twitching that really is bothering me but the unexplaineble right arm pains...
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Old 07-22-2009, 03:59 PM   #13 (permalink)
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but it makes no odds if you have had an EMG in 2th month of twiching or in 4th month. I have also pain in lower abdomen and an odd feeling in my left arm. When will you do your next EMG? I will go there in my 6th month, so in one month (or may be earlier if i can't wait for it).
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Old 07-22-2009, 04:05 PM   #14 (permalink)
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Oh i can report a new incidence: I did running for half an hour today. After 20 minutes I had a short brake and when I started again, my hip buckeld (for 5 minutes) but it stopped after running slower. Is that weakness?
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Old 07-22-2009, 04:24 PM   #15 (permalink)
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I'he had twitching, pain, cramps and many other symptoms for 31 months now. I had three emg's, one with 6 months, other with 12 months and other with 25 months. All of them showed fasciculations and no other signs so the doctors don't know what is wrong with me. I don't think it is als anymore, but I am not ok, something else is going on, but thinking of what could happened and still didn't I think I am lucky and I am trying to live as normal as I can because in any case (benign fasciculation syndrome or ALS) the only thing we can do is relief the symptoms.
Gos stay with you.

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