Old 02-03-2011, 01:45 PM #1 (permalink)
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Default Looking for a als specialist

My husband is in the process of being diagnosed with als, his dr is sending him to Virgina Mason not sure of the dr name yet, wondering if this is the best place to go in the Seattle area
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Old 02-03-2011, 02:01 PM #2 (permalink)
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Default Re: Looking for a als specialist

Checked on the ALSA website and Virginia Mason is in fact a certified ALS center, so it sounds like your doc is heading you in the right direction. Good luck.
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Old 02-03-2011, 02:39 PM #3 (permalink)
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Default Re: Looking for a als specialist

My husband was diagnosed at the University of Washington Medical Center by Dr. Michael Weiss. We found him to be very kind, and also matter of fact. However, UWMC does not have an ALS clinic. They give you referrals to PT, OT, etc that you see on an individual basis. Gary is having his follow up care in Anchorage anyway, so that didn't really affect us. I emailed Dr. Weiss last week to ask about clinical trials and he answered the very next morning. Well, I sent my email to him at about 12:30 am, so I guess it was the same day. : )

UWMC will be enrolling for clinical trials in late spring: 1 Creatine and tamoxifen, and 2 dexpramipexole.

Dr. Weiss also co-authored a paper asking for clinical trials using cannabis that I found very interesting. Gary and I are just about the most conservative old fogies that you can imagine, so our kids are amazed that we would like to see this happen! Desperate times call for desperate measures, I guess. This paper is pretty technical, but it sounds to me like something that should be investigated. They think cannabis has the potential to be neuro protective.

file:///private/var/folders/W5/W577gu8AEcKUJsEOoA1UUE+++TI/-Tmp-/com.apple.mail.drag-T0x10051ffd0.tmp.jC3BfL/ALS&Cannabis.pdf

I truly hope that you are sent away with any diagnosis other than ALS.

Blessings,
Jo
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Old 02-04-2011, 12:56 AM #4 (permalink)
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Default Re: Looking for a als specialist

Oh my gosh, you are from Puyallup? So am I ! I live in Sunrise in South Hill. My dad has ALS. I am so sorry about what you are going through with your husband hun. My dad was diagnosed by Dr. Mohammid Sayid (sic) by doing a full body EMG. He is a wonderful doctor in Tacoma, by Allenmore. I know a ton of people who have seen him for all kinds of reasons, including myself and he is an EXCELLENT doctor. You will need to just get a referral from your PCP. Is your husband a vet? Sorry, I am not on here as much as I used to be, I have a pretty full plate right now with my daughter being sick as well. But if you have any questions or need any help just let me know hun. Since you are new, you wont be able to leave a private message yet, but you can click on my name by my blubear picture and it will take you to my page and you can leave any message you like. You hang in there, keep breathing.....I am hoping the best for you!
Hugs, Kari
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Old 02-05-2011, 03:03 PM #5 (permalink)
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Default Re: Looking for a als specialist

Hi Kari, yes I am from Puyallup, down town. Thank you for such a positive/caring reply, I am really struggling today, its weird cause I had a great day yesterday, I guess you cant figure out moods huh? They're up they're down. We are waiting to get into Virgina Mason, can you answer a few questions for me? First my husband Gary 53 yrs old has gone to 3 neurologists, the first one said he saw some minor back issues in the mri but nothing that is relating to his symptoms, he didn't say anything regarding als, we went for a second opinion because he still could not walk well, drop foot and loss of strength in his right leg, second dr ordered a conductivity test from 3rd dr, 3rd dr said he cant find anything wrong with nerves, it looks to him like als but going to send you up to V.M. for a second opinion so that is where we are at now, waiting.... so my question is do you think they will be able to diagnose him in one visit with information of 2 mri's of the back and 1 of the brain and the conductivity test or do you think this will take other tests and do you know what those tests are?

Thank you for listening.....
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Old 02-05-2011, 03:09 PM #6 (permalink)
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Default Re: Looking for a als specialist

Thank you Jo for this information, very helpful although I am not able to read about it yet, a little overwhelming for me lately, but I will look at it as soon as I can. Can you answer a few questions for me? First my husband Gary 53 yrs old has gone to 3 neurologists, the first one said he saw some minor back issues in the mri but nothing that is relating to his symptoms, he didn't say anything regarding als, we went for a second opinion because he still could not walk well, drop foot and loss of strength in his right leg, second dr ordered a conductivity test from 3rd dr, 3rd dr said he cant find anything wrong with nerves, it looks to him like als but going to send you up to V.M. for a second opinion so that is where we are at now, waiting.... so my question is do you think they will be able to diagnose him in one visit with information of 2 mri's of the back and 1 of the brain and the conductivity test or do you think this will take other tests and do you know what those tests are?

Thank you so much!
Shar
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Old 02-05-2011, 04:59 PM #7 (permalink)
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Default Re: Looking for a als specialist

They will do an EMG to confirm it is ALS. Electromyography: MedlinePlus Medical Encyclopedia
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Old 02-05-2011, 08:01 PM #8 (permalink)
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Default Re: Looking for a als specialist

Do you know if this the same as a conductivity test?
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Old 02-05-2011, 08:05 PM #9 (permalink)
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Default Re: Looking for a als specialist

I see now that it is
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Old 02-05-2011, 10:00 PM #10 (permalink)
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Default Re: Looking for a als specialist

Hi Shar, In my husbands case, there were about 3 months in between the Anchorage neurologist and seeing Dr. Weiss. I think it was the convenience of scheduling for them, but it was also good because his tests in Anchorage didn't show enough abnormalities to make the diagnosis, but during the waiting period, he progressed enough to give a definitive ASL diagnosis. I'm sure the Virginia Mason doc will want to do his own Nerve Conduction Velocity (NCV) tests and EMG to determine what is going on. He will have the prior lab and test results from the referring doctor for comparison.

In the meantime, enjoy each day and delight in NOT having this diagnosis. Praying for a treatable disease for your Gary....

Blessings,
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Old 02-06-2011, 01:55 AM #11 (permalink)
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Default Re: Looking for a als specialist

Hi Shar,
My husband goes to Virginia Mason. Dr. John Ravits is the neuro we see there. The rest of the ALS clinic staff are really great. The caseworker, the ALS rep, PT & OT and resp. therapist..etc..all very helpful and caring. We go again to clinic next month. We were referred to the VM clinic by a neuro here in Spokane. We met with them, Dr. Ravits did all the tests we asked to rule out anything else..2 weeks later we were given the diagnosed. He did the NCV tests, spinal tap, we had EMG's prior to the visit..MRI's, CT scans..the works. Good luck..
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Old 02-06-2011, 03:19 PM #12 (permalink)
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Thanks you so much, you have helped me a great deal, I obviously hate thinking that my husband has als but thats all we think about now, I wished we could get this out of our heads until we know for sure, how was your waiting period? I am so sorry that you are going through this!
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Old 02-06-2011, 05:42 PM #13 (permalink)
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Default Re: Looking for a als specialist

In my husband's case, he saw the UWMC doctor in the morning, had the EMG/NCV tests, and was given the diagnosis in the afternoon. No waiting. But, he had the MRI and tons of labwork prior to that and had those results already in hand. He had broken his back 5 years before, so we thought his new symptoms were from that - we had not even questioned that he might have something like ALS, and the local doc didn't tell us of her suspicions. What she said was, "I don't see anything that can be treated," and offered a second opinion in Seattle. We have a daughter who lives in the area, and always love to go visit, so didn't hesitate to plan a trip to Seattle. Quite a shock, to say the least. In retrospect, we should have wondered why all those labs were being ordered. We thought he would be told there was some miracle new procedure that could "fix" things right up.

I don't know how to tell you not to worry. I too am sorry for you to be going through all this. Peace be with you.

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Old 02-06-2011, 10:14 PM #14 (permalink)
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Default Re: Looking for a als specialist

Thanks again Jo, boy that does sound like a shock for sure, my husband hasn't had any lab work done, do you know what those test would be for, like ruling out things? This has been so wierd for me, I've thought that my husband has something seriously wrong for awhile, I thought ms but dr is saying no to that, but possibily als, this has been like a bad dream, I don't know what is better to know early on and wait for tests or find out all the sudden, kinda wished the dr didn't say anything yet, but whatever, it all sucks!
We have received lots of prayer and have been put on lots prayer chains, Christ is our strength!
I am SO sorry that this has happened to anyone!
Thanks again for your help!
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Old 02-07-2011, 02:27 PM #15 (permalink)
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Default Re: Looking for a als specialist

Why are we feeling, acting and living like my husband has been diagnosed, he hasn't been, yes everything is pointing in that direction but still we don't know for sure, we need to stop this insanity, my husband is depressed all the time, I am some days some not, kinda in between today, not bad not great.
Thanks for listening who ever is listening
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