Possible ALS or MSA

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Bloom73

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I’m a 48y/o female. I was diagnosed with Hashimotos, fibromyalgia, and BRCA1 years ago. Just over a year ago I started losing my balance and falling to my right side. My dr did a neuro exam in the office and I failed so he sent me to physical therapy. The therapist said I had trunk weakness and thought it might be neurological in nature. About 10 months ago my husband noticed that I was speaking slowly and slurring my words, I hadn’t noticed that but told him I was having difficulty swallowing and my mouth felt like it got tired when eating. Around that time I started getting muscle cramps in my left foot. Not the typical arch cramp but my toes pull together. I figured it was due to long hours on my feet at work. Then the twitches started in the small muscles of my left foot. Approximately 6 months ago I started having difficulty typing with my right hand, it just didn’t want to do what I want it to. I figured I was just tired (more like completely exhausted) from working long hours. Everything has been slowly getting worse so I went to see my gp in April with a list of my symptoms. She said her compass is pointing to als or msa. She scheduled a bunch of labs and a nerve test. All my labs came back normal and I waited a couple months for the nerve study, which I had last week. I haven’t gotten the results of that yet. I had heard of als but had no idea what it was. I read about it and cried. I’m anxious to hear what my results are. Something is clearly wrong. It’s so hard to live in this body that I have to fight to do what I need to do. I’m at the point things feel so heavy to pick up, I can’t squeeze tongs, and I constantly drop things. My right foot has started with the cramping as well. I choke when I eat and drink more often. And it feels like it goes into my nose when I try to swallow. It feels like all of this is happening so fast. Does this sound familiar to anyone? Sorry for such a long post.
 

Nikki J

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When you say nerve test did you have an ncs( shocks) or an emg ( needles) or both? An emg would be very informative for als. Ncs looks at other issues. Why is your gp not referring you to neurology if their differential is ALS or MSA? No offense to gps but diagnosing either of these needs to be done by a specialist neurologist. It is fine and good to order tests but they should have put a referral in place so if nothing else turned up on testing you would have an appointment set up
 
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Bloom73

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I had both the shocks and the needle test.
 

Nikki J

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You should be able to see the results on a portal if you have one. Also bad news travels fast so if the results indicated ALS I would expect you to have been called. If you have weakness due to ALS in legs and arms and bulbar area it should show. Call your gp and insist on the results being given.
 

affected

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I hope you get some answers soon, I can understand this is scary.
As Nikki says, if your test was a week ago and you have not been called, this is likely good news indeed. Check your only portal for the results and/or phone your doctor and get the conclusion from the tests. It is awful waiting this long and wondering, go find out.
 
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