Old 08-15-2016, 02:22 PM #1
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Default 26 and still worried....

Hello, I haven't posted for quite some time. It appears my prior post had been closed. Sorry if that is inaccurate and I'm posting out of turn. So I got married and the wedding/honeymoon is finally behind me. I have been doing very well with not researching the internet for things on ALS and why I think I have it. I've been going to PT and that has helped (kind of) I've also been going to a counselor whom I love...but my symptoms keep finding a way of driving me crazy. I am still able to do nearly everything I have ever been able to do....when I hold my child in my left arm though, it feels as though my arm goes 'dead' it hurts and will twitch. If I bend my arm in any way it will start jumping/dancing and twitching away. My right foot/leg feels like it is constantly twitching/jumping/vibrating/buzzing LIKE CONSTANTLY. I get cramps in that foot at times too (they are not severe, but enough to bother me) The twitching is pretty consistent, but the weakness I feel in my arm and foot/leg are bothersome. I also notice if I do anything somewhat active, the next day I am sore and hurting. I moved my office furniture around by myself (not smart) and the next day my arms were hurting TERRIBLY. I feel like I can see atrophy in my left hand and right foot, but that could just be my eyes playing tricks on me. I am SO disappointed in myself for looking back on the internet but for some reason I am experiencing a relapse in my worry/anxiety about this. My specialist appointment is still 6 months out! I don't know what to do at this point. Does any of this sounds like ALS? I also feel like I could sleep 10 hours and still feel tired the next day. I get hard thumping twitches in my neck at times. But the constant buzzing/twitching in my foot/calf and the pain in my arm and hand/twitching is really the part that freaks me out. I can still walk on my tiptoes and heels. When I blow dry my hair or use my arms...my left arm is noticeably weaker than my right. It begins to burn and ache after too much use. I'm sorry this turned into a book....any feedback would be greatly appreciated! The twitching/pain has been ongoing for about 6 months now.
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Old 08-15-2016, 02:49 PM #2
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Default Re: 26 and still worried....

Hon you have posted so many times and yet you still just dumped a big clump of text on us with no paragraphs and I can't read it, so no one with ALS will be likely to try.

Please go get help elsewhere tho as I read enough in the first few lines to see nothing has changed. You still have anxiety and we still can't help you.
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Old 08-15-2016, 03:33 PM #3
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Default Re: 26 and still worried....

I read it, and NO absolutely nothing you said sounds anything at all like ALS. You really need to stop using Dr. Google and block this site from your browser-REALLY!
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Old 08-15-2016, 04:53 PM #4
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Default Re: 26 and still worried....

You've been here repeatedly. With the same bag of sensory symptoms.

You've been told it doesn't look like ALS repeatedly.

Please go away.

Please go see someone to get your anxiety treated.

Please.
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Old 08-15-2016, 11:28 PM #5
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Default Re: 26 and still worried....

Wow, Nicole, 6 months out to see a neuro in Seattle? Even if you're on Apple Health, that's a lot. People don't wait that long for any of the 3 ALS clinics here.

If anyone thought you had a problem, you'd have an earlier appointment. As others have said, if you can't agree with us that you don't have a problem, find a better counselor or see yours more often.

Don't let this dominate your life -- as in "the wedding/honeymoon is finally behind me." Nicole, the rest of your marriage is ahead of you. That's where you should be looking. Not here.
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Old 08-15-2016, 11:30 PM #6
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Default Re: 26 and still worried....

If you had ALS you would not be able to type all of that...
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Old 08-16-2016, 10:36 PM #7
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Default Re: 26 and still worried....

Nicole,

ALS is a diagnosis of exclusion, but nerve conduction tests are utilized. I looked at a previous post to see you had a nerve conduction test already which yielded nothing. Has any doctor mentioned BFS (benign fasciculaiton) to you? I believe I suffer from this. It's very annoying and when it first manifested itself I was quite upset and worried quite a bit. Five years later it has not subsided. It affects my entire body and it is most noticeable after exercise. I also suffer muscle cramps.

Eighteen months ago my mother was diagnosed with ALS. Rapid breathing and significant weight loss led to the diagnosis after three days of hospitalization and testing. In hindsight, 12 months prior she noted that one arm could not lift amount of weights at the gym and seemed weaker. She eventually could no longer turn on light switches or open jars, button her clothing or turn a car key. Having sore muscles the day after moving heavy furniture seems reasonable and to be expected. No longer being able to write your name legibly is not.

Having what I think is BFS and now a mother who HAS ALS I suggest you read a bit about BFS. ALS it is a terminal illness. There is no cure. What can you do if you do have it? Not much. My family and I are actually grateful that we didn't know my mother had ALS a year prior. It is a very drawn out grieving process. Ignorance can be bliss.

Please read about BFS. Even that seems to have no "cure". Easier said than done, but try not to dwell on it. I'd take BFS over ALS any day and so would everyone in this forum.

Please take this advice from a daughter who used to worry about muscle twitching who is now caring for her mother whose muscles are wasted away and can barely move. And no, I don't expect to develop ALS. It's a rare disease and it is not thought to be genetic in my mother's case.

Good luck.
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