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Teacherman

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Hey everybody. First thank you for listening to me, and sharing your strength and opinion. About two years ago I developed a minor tremor in my left hand but didn't think much of of it. Last year I started getting twitches and buzzing , first in my thighs then in my calves. Over time it came and went and I went to the doc for check ups but he thought it had to do with my hypothyroidism. We got my thyroid right, but the twitching, shaking didn't seem to go away. I had surgery for carpal tunnel syndrome but the results were less than stellar. All the while the buzzing twitching on my calves seemed to get stronger. Sometimes they are jerky jerky and visible. Other times it seems that it's just a faint buzzing under my skin other times it feels like bubbles moving through a straw. I began having a mild burning feeling in my forearms and started waking up with horrible nightmares. Doc thought it was tendonitis. In November I stated having bilateral muscle weakness starting in my biceps and moving to my shoulders. Biceps would cramp like crazy and it tool weeks for them to release. Next it spread to my forearms and for two weeks I had to rest them. Doc did blood work and came back with a mildy elevated ck reading indicating, he said myositis or possible thyroid myopathy since my thyroid had swung a little low. Needless to say that really had me worried. But after getting regular on my thyroid the cramping stopped and my biceps and shoulders felt like they got some of their strength back. At this point doc and I noticed I'd lost some serious muscle on the inside of both my forearms, in the same spot on both on the inside of my elbow (pinky side) he didn't know what to make of it. It is very symmetrical. Next o noticed that I was losing muscle from the bottom of my right calf. Not much, but noticible by loose skin when I flex. My muscle twitched and shaking are now everywhere (even my cheeks) but I really seem to notice it at night, as well as a vague warm feeling. Meanwhile my ck levels have gone down to normal. For the last week or so though o seem to be having trouble swallowing, and 2 nights in a row I've woken up feeling like I had a tight band under my pects just across my abs. I'm hiccupping and feel the muscles there twitching. It's like I can't breath. I feel like I'm in a nightmare I can't wake up from, and all I can think is this looks like ALS. Please any guidence would go a long way. I'm a schoolteacher and I'm supposed to go back tomorrow, but I'm such a wreck that I may have to take a few days off to calm down.
 
teacherman,

As you have seen, all of your past symptoms have been accounted for by your thyroid disorder and I imagine that your most recent symptoms probably are as well. The best thing you can do for yourself is to trust your doctor and stop trying to second-guess him by reading unrelated medical sites on the Internet. Thyroid symptoms can be spooky enough on their own. Couple them with anxiety caused by some poorly understood and ill-digested web browsing, and you have a wonderful recipe for sleepless nights and unpleasant days, but not likely ALS.

Good luck and stay relaxed -- your students need you more than we do.
 
Teacherman,

There's no mention of your doc doing an EMG/NCV round of testing. Have you had these tests done?

Atrophy can be caused by a variety of illnesses that are much less severe than ALS. If my doc were to tell me my symptoms were due to my thyroid or possible myositis, I'd jump for joy!
 
Thank you for the quick response. Believe me Im trying to take whatever comfort I can in your words. Up until today I hadn't even thought of ALS and thought if anything this was a myositis or maybe MS. So no we haven't done any EMG/NCV tests yet. I'm scheduled to see a rheumatologist on Tuesday. In the meantime, the weight's running off me like water. Almost 15 pounds 9 days mostly cause I'm having trouble with food feeling like it's going up my nose. Which feels pretty gross. I feel like I'm getting weaker by the day, and the shaking, twitching is making me feel like a paint can at true value. All the swallowing stuff started just over a week ago. Again. Thank you all for your caring responses. I'm doing my best to just relax but this really seems to be getting worse day to day. All the best to all of you.
 
Losing that much weight in 9 days would scare me! Here's hoping Tuesday brings some answers for you!
 
Tried to make it through the day but couldn't breathe. Had to go home. Finally told my boss, who immediately set up an exam for this afternoons at Northwestern. Lying here with my legs a twitching mess. So sad, so so sad. I'll hope to have answers later today.
 
It's still very possible that anxiety is behind many of your symptoms. If you're not eating, it's not surprising that you're losing weight. Most PALS find that the problem with swallowing is that they choke on food, which may be different from what you are experiencing. You should probably try harder to eat something. Try drinking Ensure and similar shakes, see if they go down OK. Or if you have a blender you can get some smoothie recipes online and try those. Don't be afraid to use ice cream and other high calorie foods, you need to stop your weight loss. Good luck and I hope you get good news from your doctors.
 
Teacherman ... I've had hypothyroidism all my life, and taken meds for it, and many years ago (long before ALS) I had what my doctor called a "thyroid storm." I've never heard about it anywhere else, or read about it, but the shaking you describe reminded me. I don't believe anything could cause that kind of rapid weight loss without SOMETHING happening to your metabolism (or else, water loss).

In any case, here's hoping they get the mystery solved, and you're back on track quickly. Please let us know what happens.
 
Thank you all so much for listening. Okay got back from the doc at northwestern. My neuro exam was normal but given the muscle atrophy/ weakness, she recommended that I go see a neuro ... Soonest that she could get me in was a week from Wed, but that's life. Ice cream smoothie? Oh heck yes I'll have one! Tomorrow I see the rheumatologist to rule in or out inclusion body myositis. Whoopie! My breathing is weak but other than that I'm feeling better, so long as I don't have to give any lectures. My students were adorable for the ten minutes I got to set them up with the sub and when I left they were happy and busily reading to each other. My boss has set me up with an aid for the rest of the week to help if things get bad. All in all I feel well loved. Thank you for loaning me a little strength, I'll keep you posted.
 
I ran into a minister over the weekend that has Inclusion Body Myositis (IBM). That's another nasty that is progressive with no treatment / no cure but it also isn't listed as fatal (nice plus, huh?).
 
Hey guys here's the latest. Got my emg/ ncv tests back today and everything was normal, and man I'll take that for what it's worth. I'm meeting with a neuromuscular doc from the Northwestern MDA clinic Wednesday. Wish me luck, and i'll be thinking good thoughts for you all as well. By the way I'm doing the ice cream / smoothie routine and I'm getting some if my weight back so again thanks for that advice. Thank you all fir your help and support in this really stressful time. It's meant so much to me.
 
Good to hear that the smoothie's are helping and that the test's were good. I think more times than not we get good news on here. I sure hope they find what you have going on, or it just improves by itself. I agree with the other previous post, some nasty things out there, not just MND's. But chances are for something treatable. Thanks for updating us, we get many more people with this result than a bad one.
 
So glad to hear the emg/ncv came back normal! Go add some whip cream on top of your smoothies to celebrate!

Good luck with the additional tests. I hope they give you some clarity and direction soon!

Peace,
Melody
 
Look I wanted to let all of you know, how much your courage and support have meant to me, over the last sleepless weeks. It's bittersweet news I got today, two docs, both agree it's not ALS. Whatever it is ill beat it , but more important my eyes have been opened to the ALS community, your power and strength and you'll be seeing me out their agitating for more money, more research and more hope, until this is thing is beat. Thank you from the bottom of my heart.
 
Great news! Hope you get this thing pinned down soon.

Good luck.
 
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