Newly Diagnosed Question

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vafords22302

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CALS
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My husband was recently diagnosed with ALS after a battery of tests from a referred Neurologists who suggest we get a second opinion. In the DC area we have John Hopkins, Georgetown and George Washington hospitals to choose from - all who have ALS clinics. We have appointments at both Hopkins and G'town in the coming months.

Any input or opinions of one clinic over another?

Thank you.
 

Nikki J

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Sorry to hear. Out of those I would say definitely Hopkins. People travel considerable distances to get an opinion from them. They are also big in ALS research. Who are you seeing at JHU?
 

vafords22302

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Nikki - not sure who we are seeing. Will check tonight and get back to you.
We are overwhelmed right now obviously. We have a million questions but not sure where to start.

My husband only has symptoms in both hands (atrophy of his thumbs). No leg issues, breathing, swallowing, etc.

Any feedback of others who started this way would be helpful.
 

Nikki J

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My sister ( who was dxed at GW and second opinion/ then went to JHU) started in her hands. First one then the other but everyone progresses so differently.

She had good luck with the ALSA though she lived in MD. Also look up the Brigance Brigade OJ and Chandra are very into patient / family support. I know Chandra has a caregiver only group on their website

When you feel up to it start looking at the important posts ( stickies) on the general subforum. Read them in small amounts but do read the one on getting a second opinion. And ask any questions you want. ( search function is helpful too)
 

lgelb

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Very sorry to hear about your husband, VA. It is always advisable to get the second opinion. As Nikki says, Hopkins is a great place to get it.

Best,
Laurie
 

KimT

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I got a third opinion at Hopkins. I saw Dr. Rothstein. He did the most thorough exam I've ever had.
 

vafords22302

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We are seeing Dr Maragakis. Any feedback? Also, on second opinion visits, will they redo a lot of tests while we are there and will we have an opinion before we leave? Trying to wrap my head around what to expect. Thank you!
 

Nikki J

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My sister saw him. He is nice and brilliant. He also will be straight forward and honest.

It really depends a lot on the individual situation how much repetition is done. Do bring copies of everything with you even if they were already sent. If you had blood work I would not expect repeats unless he wants to recheck a level. He might add more tests

If MRIs are well done then unlikely to be repeated. Sometimes they want their own EMG.

My sister only had 1 blood test ordered by him but was told it was an outside chance and that he agreed with the diagnosis. He did not repeat her EMG. He probably knew the original doctor and his skill. We are also FALS so the suspicion was very high

Good luck. If you have questions on preparing after reading the second opinion sticky please ask
 

vafords22302

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Re: Fiance' diagnosed last week

Nikki - have you experienced any side affects of riluzole? Is there anything special diet wise you have to follow on this drug?

Thanks!
 

Nikki J

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Re: Fiance' diagnosed last week

I was minimally queasy at first but that passed quickly. You have to get regular blood tests for your liver. Mine have not changed a bit.

The only food things are empty stomach ( food with any fat decrease absoption) and possibly limiting excessive caffeine or alcohol. My doctor says both are ok as long as reasonable consumption.

There are threads on riluzole with people’s experiences

There was a recent paper saying it works on later but not middle stages. They did not look at early stage and other research supports the view it works best if taken early. My doctor said the same thing
 

MVFinVA

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There is a CALS support group meeting this Saturday at the Kings Park Library in Burke from 10:30-12:30. It is around back in the Supervisor's Office. If you go to the right of the building there is an entrance next to the conference room. You could get information about the different ALS clinics in the area there. I know a lot of the PALS are seen at GW by Dr. Bayat. They all rave about her.I believe others go to Johns Hopkins. My PALS goes to the VA ALS Clinic at the VA Medical Center in DC. There is also an ALS Clinic at UVA. It was one of the first in the nation.

The first part of the meeting will be a presentation about handicap accessible vans though. The last hour will be discussion.

(On a side note. If your PALS is a vet they are entitled to veterans benefits for ALS.)
 
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