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Consultation at Hopkins

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marywest45

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As you may recall from my previous posts I was recently given a probable ALS diagnosis by a neuromuscular specialist at Sinai (MD) and later confirmed by doctor at Hopkins.
My visit to Hopkins was rather short; I was given my diagnosis (largely based on my EMG) and was told to come back for ALS clinic visit in October.
I know that I'm probably going thru denial, but was wondering if you ever heard of patients being misdiagnosed at Hopkins.
I have so many questions that I didn't have a chance to ask during my visit to Hopkins. I called Sinai neurologist, but they directed me back to Hopkins.
I was told at Hopkins that I have an axial onset ALS; I can't find much information on that. it's plenty of info on limb and bulbar, but no info on axial.
I would appreciate any info on axial or any direction where to look for such info.
Deeply thankful, Mary
 

hopingforthebest

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Hopkins

Dear Mary

I took my husband to Hopkins as a second opinion and he was there from 7 a.m. to 7 p.m. for testing and an EMG was done. They were very kind and indeed confirmed that ALS was the diagnosis. They offered to be his Clinic for ALS but we were traveling from NJ and the PENN clinic was much closer.

The doctor that did George's testing at Hopkins was Dr. Vinay Chaudry, as he was head of the Multifocial Motor Neuropathy clinic. We had hoped for MMN instead of ALS.

Wishing you the best.

Patty
 

Zaphoon

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From what I can gather, axial onset ALS deals with muscles in the trunk of the body, like back and chest muscles. This would make sense in that it differentiates it from bulbar and limb onset. Naturally, it only leaves "trunk" onset.

Anyone else with other thoughts?

Have you been experiencing respiratory trouble?

Zaphoon
 
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marywest45

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Patty, Kim, Thank you very much for your replies.
Kim, I'm having shortness of breath walking and laying down, but my FVC is 94% , same as it was last year.
Also, a lot of excessive saliva.
Mary.
 

Zaphoon

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That shortness of breath while laying down has got to be a bummer! Your FVC looks really good, though. How do you handle breathing while trying to sleep?

Kim
 

rose

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Mary,

Hopkins is the best place to go when you find yourself with a rare presentation of an already uncommon disease. I too was diagnosed at Hopkins, still doubt it, but not their competence, more just happier living in denial I guess. As time passes, if you give them any reason to revisit other possible causes, they will.

The staff at the clinic are wonderful, and they will be able to answer some of the questions you have. Once they become familiar with your situation, there will probably be more in depth respiratory testing done.

Bipap would help you with breathing when lying down, but it may be a little tricky getting insurance to cover bipap while your readings are so high, however, there could be ways around it. If you participated in a sleep study, and it showed that you either have obstructive apnea, or your oxygen drops off while at rest, then your insurance would pay. You might still have to "fail" a cpap trial, but it still could be the road to take getting to the bipap and help with nightime breathing.

Erica, who is a forum member, I believe is also axial onset, and had diagnosis confirmed at Hopkins. Hopefully she will see you post.
 

hopingforcure

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It seem'so odd you havev axial onset yet such a good breathing number? 94% is a really good number. Did I understand you correctly?
 

Erica

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Hi Mary, Welcome to the Forum.
I was recently seen at Hopkins for 2nd opinion and they confirmed my diagnosis of ALS.
I started with pain and later developed atrophy in the R shoulder and upper arm.
Now have problems with R shoulder and jaw muscles.
I was told at Hopkins that I've an axial onset.
I was recently fitted for BIPAP; so far having trouble with getting used to.
Feel free to ask questions, Erica.
 
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