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Sick and SO scared it's ALS

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Old 03-19-2012, 12:13 PM   #1
Join Date: Mar 2012
Location: Vancouver
Posts: 3
katiejasper HB User
Sick and SO scared it's ALS

Hi everyone

I am a 32 year old female with very strange symptoms for the last 2.5 months. I have an almost 3 year old and a 4 month old, so life has been pretty busy the last few months.

A week before christmas my left thumb began twitching. Figured it was from computer use (I'm a designer) or from holding my colicky baby for hours a day. Then after a few glasses of champagne on New Years Eve, I woke up New Years day achy from head to toe, with twitching all over and nauseous. Felt like the worst flu I've ever had. This lasted weeks with a trip to the hospital after 5 days. They diagnosed me with "exhaustion" and dehydration pumped me full of fluids. Did some blood tests and told me to get some rest and eat. Symptoms just kept getting worse and was very tired and achy. My left thumb and right quad began feeling weak and the twitching continued on those areas as well as all over. Legs, arms and even back. I was hopeful that it was just BFS and a bad flu. A trip to the doctor for more blood work. All seemed ok. She tested for calcium, mag, thyroid, b12, CRP etc...did a quick neuro test etc.

Another trip to the doctor as my right calf appeared smaller than the left. I brought up my concern with ALS and she said it's very rare and i'm too young, but referred me to a MS neuro.

2 weeks ago I had my neuro apt. She did strength test etc. I described the symtoms, told her that my thumb was awkward and had been twitching 2 months, and that the calf was smaller than the other. The right knee has been painful and both knees are all bony. She said not to worry about that or about the twitching. She did measurements of the calfs and said that that was a concern. I showed her my forearms which appear bonier than usual. She didnt seem concerned. She concluded that she was not worried about MS (no vision problems) or ALS (she said too young) but has referred me for an EMG. She didn't seemed at all concerned with my symtoms and said to just keep eating and exercising as much as possible. Since the neuro apt I have had a hard time swallowing my spit on and off, it seems like my throat is closing, and the weakness in my knees and legs hasn't gotten any better. Some days are better than others though. Mornings I'm more stiff and limp more. I am still able to go for slow walks with my sons, but have a bit of an awkward walk because of the pains in my knees. My hands seem awkward sometimes like it's hard to sign my name and turn knobs etc... but this again, is on and off. I have to wait another 8 week for the EMG apt.

After MUCH much research, in hopes of finding an answer to my symptoms, I keep winding back in the ALS boat. I have been on the als forum a bunch. I posted on their board about a month ago after the weird "flu" type symtoms and basically got told to stop googling my symtoms and that nothing I had described sounded like ALS. I have lost weight though I have tried to up my caloric intake. People keep commenting on how I'm getting skinny.

Now my right shoulder is aching. From what I've read about ALS, my symtoms aren't exactly typical, but a lot of cases aren't. It seems it usually starts in one location and goes from there. Mine started as a twitching weak thumb and opposite leg, forearms and now shoulder? I am still strong. I went to the gym last week and lifted weights, but I feel weak if that makes sense.

I am so worried and am trying to spend as much time with my little boys as I can't get ALS out of my head. I have convinced myself I have it and it's not a good road to be going down. I know I shouldnt self diagnose but Im just trying to be proactive. If anyone has any insight in to what this could be I would be very grateful.

Thanks kindly!

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Old 03-19-2012, 12:47 PM   #2
Join Date: Mar 2012
Location: Vancouver
Posts: 3
katiejasper HB User
Re: Sick and SO scared it's ALS

I forgot to add:
Was VERY dizzy for weeks
Occasionally I feel tingling and numbness

Thank you!

Old 03-20-2012, 11:50 AM   #3
Senior Veteran
Join Date: Sep 2005
Posts: 660
Brocallie HB UserBrocallie HB UserBrocallie HB UserBrocallie HB UserBrocallie HB User
Re: Sick and SO scared it's ALS

It doesn't sound like ALS to me. Some things to consider:

Myasthenia gravis (I have that)
Lyme Disease (chronic)
Mixed connective tissue disorder

Can you see if you can get the EMG appt moved up? You need some answers.

Good luck.

Old 03-20-2012, 11:57 AM   #4
Join Date: Mar 2012
Location: Vancouver
Posts: 3
katiejasper HB User
Re: Sick and SO scared it's ALS

Thank you Brocallie!
I did call about a week ago to see if they could move the EMG up. She said she was going to juggle some things around, but I have yet to hear from her. If I don't hear from her soon, I will call again. (Don't want to be one of those annoying patients but at the same time need some answers!). Thanks kindly for taking the time to respond and for the insight!

Take care!

Old 07-21-2012, 08:10 PM   #5
Join Date: Jul 2012
Location: MI
Posts: 7
marielinn HB User
Re: Sick and SO scared it's ALS

I hope your EMG was fine. It IS concerning about the muscle atrophy in conjunction with the twitching (fasiculations) - but ALS tends to be painless weakness, so your achiness would not really fit. The EMG should give some answers; make sure they rule out problems with your neck too (cervical stenosis), which can mimic ALS. You would need an MRI for that. If you get no answers after the EMG, get a second opinion with a new neurologist, perhaps at an academic center.

You would be really young for ALS, and people your age with ALS tend to have a familial version, but weirder things have happened. Again though, the pain doesn't fit with ALS, but it still sounds like something is going on. Good luck.

Old 07-11-2013, 12:04 PM   #6
Join Date: Jul 2013
Location: Upstate NY
Posts: 1
doll2b75 HB User
Re: Sick and SO scared it's ALS

I am wondering how you are doing? It has been more than a year. I feel like I could have written your post. I am having the same experience, with symptoms a laundry list long. I also have a baby, now 8 months. Most labs have come back normal. My problems really began when I had braces put on. I have gotten some answers, but still have many more questions unanswered. I am also very scared of ALS, but Myasthenia Gravis is coming up a lot, too. I am going to have an all-inlcusive auto-immune antibody test, but have to go out of state to get it. Please, let me know if you learned anything or finally got a diagnosis. Thank you.

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