Bulbar als?

[Tomannie11]

Hi
6 months ago I got very sick lasted a month. Couldn't breathe hard time swallowing and talking. Lost 9 lbs in a week. Got rubber legs. Basically became wheelchair bound because every time I would walk I couldn't breathe. They put me on a ton of asthma meds which made me worse. Testing heart and lungs were normal.

Took antibiotic and improved. Not 100% but back to functioning again. Lasted 3 months then it all started again. This time I lost 20 lbs in 6 weeks. More tests. Endoscopy sinus cat scan myanthis gravis all normal. My Dr said he felt it could be ALS and sent me to Neuro. He ordered all the tests. Emg in 2 weeks had MRI yesterday.

Neuro said he suspected neck injury not ALS. His exam of me was normal except hyperreflexia of both arms and both legs. I am eating again not a lot but am able to maintain my weight, talking better but not too much talking cause it gets me winded. I can do physical activity like loading dishes for 5 to 10 minutes at a time. Not a lot of weakness its just that when I'm up I get short of breath.

The only other strange thing is I tried light 5 lb weights to maintain arm strenght and notice when I raise them its ok but when I lower them its like someone's tapping on brakes with a jerky down movement.

Well of course I already had ALS in my head before Dr said it thanks to this wonderful internet. Hoping the Neuro is right but wondering if he's just trying to calm me till there is something definite. Do these symptoms sound common to any bulbar onset people? Thanks I'm hoping I've just got all in my head. My best to all of you

 

[lgelb]

If you post the MRI report when you get it, we could be more helpful. However, I will say that without an MRI or EMG, there are definitely possibilities besides ALS that seem more likely, especially when you describe shortness of breath with normal lung function tests, and a neck injury is definitely one of them.

Is the neuro you are seeing with an academic institution?

Best,
Laurie

 

[Tomannie11]

I will post results as I get them. The neurologist is a Kaiser doctor that's all I know. Thanks for your response. Annie

 

[Tomannie11]

I have another question about upcoming Emg. I don't want to freak about abnormal results if they aren't ALS related. Since I have upper and lower reflexxia and possibly a neck injury, I am assuming my EMG will be abnormal because those conditions would also cause that I think. Is that correct? Sorry to bug again. Kaiser is very tightlipped won't tell you nothing till Dr has results. Waiting is hard. Thanks again

 

[lgelb]

The report will specify not only that a study is "abnormal" (if it is), but the most likely explanation. So there should not be a reason to unduly freak about ALS.

You have a right to anything in your medical record at any time.

 

[Tomannie11]

Oh good thank you for your quick reply. I wasnt sure if they would just show a bunch of numbers or an explanation. Thanks again

 

[Tomannie11]

The Dr just called me about my upcoming EMG today. He said they are only testing my arms. My Neuro noted hyperflexcia in my arms but when he tested my legs they were firmly against floor and didn't budge. I even mentioned that but he didn't redo or raise me higher. My primary Dr noted hyperreflexia in both legs too they flew up but emg is going by Neuro order. I asked no bulbar test? He said no that only when they suspect ALS. I told him my primary Dr thought I had that. He said Neuro is looking for MG. I thought odd cause they did a blood panel and he never mentioned it an also said he thought neck injury. I guess my main question is if I do have ALS can they pick it up from just testing 2 arms? Sorry to bug again. 6 months of anxiety since this began and my return visit to Neuro isn't till January. This waiting is horrible. Thanks again

 

[Nikki J]

It is unnecessary to test every symptomatic area to rule out ALS. You have symptoms in your arms and the doctor suspects a neck issue so the arms are completely appropriate

 

[Tomannie11]

Thank you. Much love to you all

 

[Tomannie11]

Just got back from EMG. Dr said my tests were normal and that I did not have ALS or mathenia gravis and that I'm told old to be getting MS. I asked about future possibilities because we all read the posts of ppl saying they had clean emg then bad ones later. He said frankly with as much weight as I lost if I had ALS my test would have been really dirty if ALS was the cause. So I am probably looking at the neck compression injury which is the best option they were looking at. I want to thank you all for being there and answering my questions. I can't tell you how much it meant. Thanks and love

 

[Nikki J]

Thank you for letting us know. Happy for you

Best of luck

 

[Tomannie11]

Final update. Had my MRI read today. No ALS MG or MS. So prob back to neck issue. Just wanted to post this to give hope to others who are in the waiting period and are sure like I was that they have ALS or had a Dr tell them they believed they had ALS. Once you hear that its hard to believe anything else. In defense of my Dr he didn't just blurt it out thoughtlessly. He's been my Dr for 20 years, been working on this recent issue 6 months and I point blank asked him what he thought was going on and then had him explain the reasons he thought it was ALS rather than other diseases. So hard as it is wait on the tests for your answer. Prayers for all of you who are going through this nightmare.

 

[dldugan]

Great. I am happy for you. You can now relax and move on.

 

[Tomannie11]

Well I'm back. Neuro called today left a whole lot of unanswered questions. Said MRI and cat scan emg and ncs. Were neg except there's abnormal signal on c2 and t2. There's no compression so there not causing my symptoms. Also have nodules in thyroid that need biopsied. I asked about the hyperreflexia and loss of sensation and he said they would be caused by brain or neck and my neck apparently isn't causing. So I asked about PLS. He said its a possibility but lets not jump to that and is referring to a nueromusclar specialist. I asked what he was and he said he specializes in epilepsy. Geez so now I get to start all over.

 

[lgelb]

Hyperreflexia, especially inconsistent as you describe, could certainly relate to thyroid hormone levels, which could also be associated with shortness of breath, Annie. So I'd continue to doubt any MND is involved. I would follow up on both fronts, of course.

Best,
Laurie