My Story

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Hello All,

I have had some pretty scary health issues that started a little over a year ago. I was diagnosed in Feb with Ankylosing Spondylitis and I thought that was the answer to everything. We'll my rheumatologist referred me to neurologist recently because she said it was unrelated. A year ago I had muscle weakness and trouble swallowing along with my other symptoms but it went away. Now for about 5 months I have had a BIG problem swallowing and I have lost a lot of weight. For about a month my arms and legs have been weak. They shake and twitch. I thought the neurologist would tell me I was fine but she noticed muscle wasting in my left hand. Clinical weakness in right side of body and said my dictation was not right. Also my reflexes were brisk. She does not think that it presents like ALS but can not rule it out. Had a clean MRI and waiting for results of lumbar puncture. Wanted to get some opinions. This has been absolute torture. I do not choke on food or have hard time with liquids just trouble swallowing whole food. It gets stuck or comes back up. My voice does start to slur or shake but only after speaking for a little while. My strength seems to come back after rest but goes pretty fast. I ask neurologist if that ruled out ALS and she said no. But I have sensory issues which leads her to believe it could be something else. Please give me your opinions?

 

[MaxEidswick]

>Please give me your opinions?

see an ALS specialist clinic, get a referral to Houston Methodist if you can. in any case see a motor neuron specialist.

 

[Dusty7]

First, it does not sound like ALS to me.

Second, have you had an EMG? Houston Methodist would be great if you can get the referral.

 

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My neurologist really thought it was MS or CIDP but my MRI was clean abnd my lumbar puncture is clean. Just heard this morning. She told me that is she could not figure it out then she would send me to Houston. She Isis her residency there. She wanted me to do other tests before EMG. That is next but the waiting is torture.. My mouth keeps twitching. I do get better with rest. Is that common with ALS? Thank you for your response

 

[Dusty7]

Generally the symptoms of ALS do not get better with rest, but I don't think your twitching is a symptom of ALS. There are a number of things that point away from ALS.

Brisk reflexes would also seem to point away from CIDP, but when you get an EMG/NCS, the NCS should tell you if you have a demyelinating disease (like CIDP) or not.

It seems to non-doctor me that there are still many diseases on the table and you will need that EMG/NCS to start ruling some out. Good luck and keep us informed.

 

[Atsugi]

Amy, while your symptoms are troubling, they didn't say "ALS" to me. You still have plenty of diagnostics to go through. Until then, I would worry about some other more common diseases and stop worrying about the rare terminal disease.

 

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Thank you Guys! I appreciate your input! I will update you. EMG is not until October. Thanks again!

 

[skipper66]

Good luck Amy. Hope you find your answers soon and it's something that can be treated.

 

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Thank you all for your help. I told you I would update. My neurologist found a syrinx on my cervical spine that extends to thoratic spine and she is looking into it. She thinks this could be the cause. She still can not rule out ALS but is pretty certain I don't have it. Sorry to all of you who have had your life turned upside down. Hoping you can find a little bit of joy in each day and some comfort in the support of others.