Role of your ALS clinc?

[rolark]

I am relitively new to the whole - ALS clinic vs family doctor relationship.

My wife was diagnosed 6 months ago and at that time we were introduced to the ALS Clinic. Our impression was that since our family doctor knew very little about ALS and the Clinic specailzes in ALS that the clinic would be our new primary medical sourse.

The problem is - the clinic doesn't seem to be available to us for anything but quarterly visits. In Gail's case - her disease is progressing at a rate that can not be serviced by one appointment every 3 - 4 months. I read about possible other alternitives to baclofen for the jumping muscles - but can't get the problem fixed until November! Sleeping 2 -3 hours a night until November doesn't seem like a very good option.

Would you please share who you use as a medical team - or do you just rely on a visit to the ALS clinic every 4 months?

 

[joelc]

Your family doctor should be your primary source. You might need to find one that knows more about ALS, but the clinic should not become your primary source.

I think you will likely find more help on forums like this one than most doctors can offer - but forums should NOT replace a doctors care.

You can learn a lot about ALS here, then go to your doctor and educate him/her.

Do you have a support group in your area? They can be an invaluable resource for you and will be aware of what medical help you need and where to go to get it.

First, try to connect with a local support group and let them help you with your questions/concerns.

Sorry you have had to join our group! My thoughts and prayers are with you!

 

[Al]

Hi rolark. Do you know if the Society sent your GP the Manual for Physicians with an ALS Patient? When first diagnosed my GP didn't know very much about ALS. I was his first patient with it. I go to him for day to day needs and it helps to have an idea beforehand of what you want to try and then he can look up in the Compendium what it is you are looking for and them make a decision as to whether he wants to prescribe it. Not many GP's have more than one ALS patient so it's a learning experience for us all. Hope this helps. AL.

 

[rolark]

Our fear has always been - different doctors prerscribing different medications - and with a disease without a cure we are walking on eggshells trying not to screw things up even more. But when you need to make it through the night or through the week - a unanswered message, unanswered email and 4 month appointment window just doesn't cut it!

Tim

 

[TRACY22]

eh

Is the "ALS"clinic in Canada much diff then a US clinic?

Mine in Seattle is quarterly for when I see 2-3 Docs +OT+Nutrition+nurse, all on one day. But when you progress u can see an individual of the group, as needed. They also have me see a general doc for normal stuff like;pain,sleep,bowel,bp,thyroid......everyday junk.

All docs give me their nurse, assistants, tel #.

 

[Al]

That's just about the way it works here at the clinic as well. One thing you have to do Tim is remember to tell the other doc if one of the others has prescribed a new med. My GP even gets antsy if he has to give me a refill of something that the clinic has prescribed. Most of the stuff your GP will prescribe for cramps, spasms etc won't have any effect on the Rilutek or anything else taken for the ALS. If she is having a problem with something and it is a real concern call Myrna at Sunnybrook. She's pretty sharp and is very helpful. If you need to get in sooner she and Olive can arrange it.

 

[hope]

Tim,

I agree with you. There needs to more help for the patient and the families. It seems at first there was answered emails and answered calls but it has all quieted down. Every three or four months is not enough. It is so sad it really is.

Hope.

 

[Boots]

Tim, My husband and I also rely on our PC to fill in between those quarterly visits to the ALS clinic. He is more than willing most of the time to help us get whatever meds we(and he) feel can help. He gives Den xanax to help him sleep at night. He uses the lowest dose available and it helps him to get the much needed rest that he (and I) need. When you get good rest your days go much better too. I hope you can get your PC to help you before Nov.

AL, Our PC told us we were his first ALS patient in 20 years of practice. I didn't know they had an ALS physicians manual. I'm sure he would appreciate one. Do we just ask our ALS clinic to send him one? Thanks Boots.

 

[Al]

The ALS Society of Canada provides them to doctors. I would think that the American ALS Association would have something similar. If they don't your doctor or yourself can go to www.als.ca and at the bottom of the page is an icon for the book. If you click on it you can download the manual in pdf form and print it out. I'm not sure how many pages it is but it may be quite a few. All they ask is for your name and an email address. Hope this helps. AL.