My latest Cleveland Clinic update

[PastorDan]

Well, I'd been on Amantadine, 2x/day.  Fiddled with times a bit; settled on 7am & 2pm.  Any later & it interfered with sleep.  Was on it from early Sept. into late Oct.  On advice of the neuro's nurse (Nurse with lots and lots of letters after her name), I started back Monday with only the morning capsule; hoping I'll grow accustomed, because it really did help lots with fatigue - at 200mg/day.  Now, will it work for me at 100?  If another week goes by and I don't feel improved, they want me to try going back up to 200.  I think I will cross that bridge if it rears its' ugly head next week.

I revisit the spine guy in a couple weeks.  Meanwhile, nobody followed through on the now two Rx's I have for PT, so I will try to get that set up.  I'd like to say tomorrow, but it's quickly filling.

Neuro agreed with nurse on Amantadine, and said (Oh, wait!  You guys know this part, don't you?) "Unless something happens, come back in six months, when we'll do another brain MRI."

Thanks, Dr. Doogie; I know you're trying.

[candy158]

Pastor Dan, I'm sorry about what you are going through too, wow, this has been a horrible year for most of us, hasn't it ??  

Sometimes, it just seems like we have to take this into our own hands, and research, and research, and do more research, and make lists, and find out what works for people, and any drugs, or anything you can think of, then go to the Dr. totally ARMED with your information, and don't let them talk down to you, just keep going back to your list, and eventually, my Dr's anyways, have been quiet and sit back and let me rattle on......

I don't know if you "rattle" , but I know that I sure do , especially when I am stressed out and frustrated.

So, maybe give that a try, I don't know what else to suggest, but, we sure are praying that an answer will be in the near horizon.

Praying,
Candy

[Guitar_grrrl]

PD and JB, I still can't believe you haven't been diagnosed. Grrrr!

[PastorDan]

Well, I put in a long, full day today, no real fatigue, but I believe I will sleep well tonight.

Thanks, everyone, for all your support & encouragement.  We pray for all of you more often than you know.  Mostly, we're giving thanks.

[Cann1980]

Pastor dan... I am glad the amantadine has been working for you.
I think it has been helping me too.
Although I take one at around 9-10am because my mornings get sluggish by 11 am  and then again late afternoon ... I can go as far as supper time dose and still snuggle up for dreamland by 8:30pm. :/  

[rendean]

Dear JB and PD,
Sorry you guys are going thropugh so much to get a diagnosis and adequate treatment so you can get the most out  of life!

You are always in my thoughts as some of our you are some of our most loyal limbolanders. Stay the course and I'm sending good thoughts and crossed digits that you both will find the right neuro to give you a diagnosis of something concrete!

Hugs,
Ren

[HVAC]

Sorry guys.

Alex

[johnniebear]

your story is  sounds like a mirror of mine..   infact about the same time I first saw a neuro was in 2008..   and we both have beards  ...


I felt like the last visit that I got a pat on the back,  instead of return in six months my Dr Doogie  says  " lets make it a year this time"

I won't bore you with the details,   a quick summary he said I don't meet DIT.  


     """WHAT ""       from the baseline  MRI  and follow up MRI  I had one        
                            enhancing lesion.

I won't be returning to this MS Neuro..


take and stay strong  my fellow  limbolander

John