Christmas!
- Thread starter gewitham
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MarianneS
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- Jun 8, 2008
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- PALS
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- 06/2008
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- lexington
Hello Gary,
I will be ther at 1pm on Feb 16. I see Dr Russell maybe you can too. I like him a lot. His news isn't always the best but he is a caring and compassionate man.
Marianne
If you are there at that time let me know and I'll be the one with the rose in my teeth!
I will be ther at 1pm on Feb 16. I see Dr Russell maybe you can too. I like him a lot. His news isn't always the best but he is a caring and compassionate man.
Marianne
If you are there at that time let me know and I'll be the one with the rose in my teeth!
gewitham
Member
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- Dec 22, 2008
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- 11
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- PALS
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- 12/2008
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- US
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- ME
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- Rockport
MarianneS
Marianne,
I have my first visit to the Lahey ALS Clinic or wherever I was referred on Feb. 16th at 9 a.m. I meet the staff or so I am told.
I had the Dx last time with Dr. Hreib & I missed the follow-up with Dr. Russell as Dr. Hreib had given me 2 tranquilizers... then I had lunch with a glass of wine... then depressed & shocked I collapsed to bed.
I go down to stay at the Marriott, Burlington the 15th. I will be going back to Maine after my appointment unless we work out a time to visit? We have to be more specific than rose in teeth :lol:
My local Neurologist gave me 50 mg. of Rilutek twice per day. It is really making my symptoms worse (I think) and making me very tired & weak. Do you take this stuff? Are there any NEW studies that show this stuff works?
Gary
Marianne,I have my first visit to the Lahey ALS Clinic or wherever I was referred on Feb. 16th at 9 a.m. I meet the staff or so I am told.
I had the Dx last time with Dr. Hreib & I missed the follow-up with Dr. Russell as Dr. Hreib had given me 2 tranquilizers... then I had lunch with a glass of wine... then depressed & shocked I collapsed to bed.
I go down to stay at the Marriott, Burlington the 15th. I will be going back to Maine after my appointment unless we work out a time to visit? We have to be more specific than rose in teeth :lol:
My local Neurologist gave me 50 mg. of Rilutek twice per day. It is really making my symptoms worse (I think) and making me very tired & weak. Do you take this stuff? Are there any NEW studies that show this stuff works?
Gary
abbas child
Very helpful member
- Joined
- Feb 29, 2008
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- 2,168
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- 07/2007
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- Maryland
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- Eastern Shore
Gary, I was diagnosed at Johns Hopkins, where I was told either I could travel there to be treated or else be treated locally. I went local, looked into Rilutek on the internet, then was told by my local dr that if I'd stayed with Hopkins they'd have me on Rilutek--which the local dr thinks has way too many side effects and very little to offer. That happens to be what I had also learned in looking into it personally. Having said that, please do look it up for yourself so you can make an informed decision.
MarianneS
Active member
- Joined
- Jun 8, 2008
- Messages
- 64
- Reason
- PALS
- Diagnosis
- 06/2008
- Country
- US
- State
- ma
- City
- lexington
Hi Gary,
My first visit to the clinic lasted about four hours. It was pretty overwhelming, meeting all the different people. If you do get tired just tell them enough. My husband Jerry comes with me and I have him write down all the information we talk about. I hope you have someone who can go with you as it nice to have another set of ears and a support system.
I am not taking anything at this point, so I can't help you there but I know this forum is a wonderful place for answers. My als is bulbar onset and the trouble is with my speech and swallowing and breathing. I am still mobile at this point although the twitching is now throughout my body and I also get muscle cramping as well.
Maybe at the clinic if I have the rose in my teeth and a bottle of wine you will recognize me, or run away! It's really not the wine that makes me sound like I'm drunk, at least not that early in the day haha.
I wish you peace in the new year and hope the clinic will be helpful.
Marianne
I
My first visit to the clinic lasted about four hours. It was pretty overwhelming, meeting all the different people. If you do get tired just tell them enough. My husband Jerry comes with me and I have him write down all the information we talk about. I hope you have someone who can go with you as it nice to have another set of ears and a support system.
I am not taking anything at this point, so I can't help you there but I know this forum is a wonderful place for answers. My als is bulbar onset and the trouble is with my speech and swallowing and breathing. I am still mobile at this point although the twitching is now throughout my body and I also get muscle cramping as well.
Maybe at the clinic if I have the rose in my teeth and a bottle of wine you will recognize me, or run away! It's really not the wine that makes me sound like I'm drunk, at least not that early in the day haha.
I wish you peace in the new year and hope the clinic will be helpful.
Marianne
I
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