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BlueEyesOhio7

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PALS
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06/2014
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I want to get some feedback on a problem I have.

Was diagnosed June 17, 2014. At that time I was scheduled for an appointment for follow up visit on July 17th. I was then scheduled for a follow up appointment October 7th.

I believe my disease is progressing rather fast. I have a concerns about that and wanted to see my doc earlier than October 7. I called the office, left a message, no return call. I called a week later left a message, no return call. I called again and got the nurse practitioner. I said I had some concerns and wanted to see the doc before October, she said he was in India. She told me he is frequently out of the country. I asked if I could see another doc and she put me off and said to call her next week if I was still having a problem. (might having a terminal disease be considered a problem enough and cause enough to warrant an appt? If I'm still having a problem? My “problem" will not go away next week) Apparently they have the “ALS clinic” on the 2nd and 4th Tuesdays of the month.

Is this the way it is with docs and ALS clinics? I have made an appt. with Cleveland Clinic and am going to switch docs and to a different “clinic” I am having a heck of a time getting my records to take to the new doc. This is more stressful, it seems to me, than it needs to be, no?

Lynne
 
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I had nothing but good experiences with doctors and appointments. They seemed to be very cognizant of the seriousness of the disease.
You need a new doctor.
 
Lynne, unfortunately seeing the doctor won't change anything with your disease progression. Maybe some of your questions can be answered by the experts here. Sure you need reassurance and support which an absent doctor can't provide, so here is the next best thing! Hang in there. Donna
 
IIWII ("It Is What It Is!") ...
 
I think it's crap Lynne.

If you can get your records and move to a better doctor and clinic do it.

Of course a new doctor can't cure you, but quality of life is enhanced by having health professionals you can trust and who take an interest in where you are at, and what is coming next to help you plan in advance.

Most clinics only see PALS every 3 months. In between you need a doctor you can see if you have any concerns eg feel your breathing is worsening, are choking too much so you can be checked an cared for between clinics.

I also agree, talk here, start threads about anything bothering you or seeming to be progressing and you aren't sure, and we will help all we can.
 
Lynn, are you taking Rilutek? I recently read a post from someone who said it really seemed to help.
 
Lynn that is crap, get a new doc or a system of them that work well for you, as they are working for you!
We have gone to clinic and such at a Mayo but for our every 3rd month visit it is the local neuro doc. The local guy is here for anything we need and his office staff works well with us. Though a lot of what I have learned I get from this wonderful place and often it is simply taking this info to the doc to trouble shot future needs........ if issues or concerns arise they need to be avalible to you
 
Lynne, Whenever my husband has a procedure or test done, we request a copy of the results the day of the procedure. All of the radiology places send them to you 7 days after the test and will give you the disk the day of the procedure. Lab results for us are done thru quest diagnostics. We signed up for a patient account so we can print out all the lab results. Office notes we get on the next visit so his chart at home is always current minus the latest notes. This has helped greatly when things dont get sent. The offices dont mind providing 2/3 pages of notes and appreciate not getting bothered whenever we need to send information. I just do it. Just an idea to decrease your aggravation.
 
Lynne,
You have a legal right to your medical records a.s.a.p. That is a bunch of crap that they are pulling. You need a new doctor a.s.a.p. I'm sorry you are having a bad experience with them. My dad has had wonderful care in Dallas at their ALS clinic and their VA clnic there. But, when he was first experiencing symptoms the first neurologist he saw in Terre Haute, Indianna was the most insensitive doctor I have ever met in my life. I put a annonymous review of her bedside manner on a medical website and somehow she knew it came from me. She refused to ever see my dad as a patient again and had him escorted to the door. Best move we ever made!
 
I have been real lucky but my drs have been really great
 
At UCSF there is a full clinic every Friday. Usually I'm scheduled every three months but I can call in for a problem interim visit on any Wednesday and meet with the doctor and other professional, eg respiratory therapist, dietician, as needed. I also have email contact anytime I need it. Sounds like you've got a small clinic that's overworked. Hope the Cleveland clinic will be more like UCSF. Alex
 
Sounds just like what we dealt with. Clinic was months apart, hard to get in otherwise and not many options for Drs
 
LaurieCALS - I took Rilizole/Rilutek for a few weeks. Too many side effects for me. ;-(
gooseberry - lesson learned! Thanks

Thanks for the feedback!

Lynne
 
>I took Rilizole/Rilutek for a few weeks. Too many side effects for me

i have heard that starting with small doses can work -- stats say it postpones respiratory failure 3-4 months, maybe more. that might mean one more football season!
 
Go Ducks! And 49ers too.
 
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