Part II: My PPMS, Checking back 3 yrs. later.

[Windwalker]

Today was the day of my appointment with my Neurologist at the Barrow Clinic...it went well and I definitely like the guy. Second time I've seen him.

The first piece of good news concerned the Brain MRI. Although there are two distinct lesions, there are only two and my "brain mass" is normal for a man my age (no atrophy). The troublemaker, as he put it, is a good size lesion on my spine going C2-C4. The lesions are of the type consistent with PPMS. Not active...significant scarring.

Then he started talking about a clinical trial that he was running for RRMS testing a new drug. He was very excited about the results they have seen in the RRMS trials, which just finished, and he is now starting a trial for people with PPMS. An interesting thing he said is that he "knew of" about 20 people whose PPMS fit the criteria. Only 20 people, and this guy is an MS Specialist at one of the best Neuro. Clinics in the nation. That's how rare PPMS is. In any case, he seemed to genuinely think that this drug could help people with PPMS. He told me the name but I don't remember it. I had never heard of it.

We discussed LDN and Amprya. His take...LDN has a problem when mixed with opiate based painkillers. I do not take any but take Tramadol, a non-opiate painkiller. He did not know how that interaction would go. He felt that the Amprya could provide a possible energy boost so I decided to put off the LDN and go with Amprya only. We filled out the paperwork, did the timed walk, ...I had to use a 4 wheel walker, quick exam and hopefully in a month or so I'm taking Amprya.

What I liked was his willingness to let me try drugs that could possibly provide a benefit. The CRAB's were not brought up at all. Another interesting thing...He said the diet, quick smoking and exercise were the best things I could do for myself.

I find it hard to believe that I'm the only one out there who ignored his MS. Who did nothing for years while continuing to go at the same pace. Who never thought it would get that bad.

What I've learned more than anything is that don't wait to start doing things to help yourself. When you get to a certain point with the disease you realize that all that stuff that you put before helping yourself really is not as important.

I got some encouraging news today and am glad I finally decided to start helping myself. It's not too late.

[Des]

Good luck with it!

[gomer]

My MS is realitively mild. I had Sx for decades, that came and went. I had become a GOMER back in the Navy, still a GOMER after I got out. As a result my diabetes was ignored/not found till I was hospitalized for it.

The Co doc I had been sent to, gave me a clean bill of health and returned me to work in time for lunch. That evening my wife called an ambulance afer I drank just a couple oz of cola. For decades my neuro issues were blamed on my diabetes.

Then in 2009, a new eye doc opened the MS can of worms, next my famdoc called me in for a "it fits" MS talk. I had avoided bringing things to my docs attention to avoid getting GOMERed.

I had given up on seeking neuro answers back in the late 80s after the VA sent me to the shirnk dept for COMPLAINING something else was WRONG. (not nuts or depressed and returned to the GPs) Over 2 decades later, after he MS issue was raised, the VA did loads of testing. MRI (clasical MS brain & spine lesions) alone said MS, backed up by LP and VEP results. (also had tons of blood work as well).

For many years Sx would come and disapear as if by magic. NOW I wish I had been more assertive, maybe I could have delayed the need for a powerchair part-time and a scooter for outings. At long last I KNOW, and so do my docs, WHAT was and is that something ELSE!


NEVER give up seeking medical answers!

DocGomer Doctor of, Been There, Done That.

[Windwalker]

[I][B]

I had given up on seeking neuro answers back in the late 80s after the VA sent me to the shirnk dept for COMPLAINING something else was WRONG. (not nuts or depressed and returned to the GPs) Over 2 decades later, after he MS issue was raised, the VA did loads of testing. MRI (clasical MS brain & spine lesions) alone said MS, backed up by LP and VEP results. (also had tons of blood work as well).

For many years Sx would come and disapear as if by magic. NOW I wish I had been more assertive, maybe I could have delayed the need for a powerchair part-time and a scooter for outings. At long last I KNOW, and so do my docs, WHAT was and is that something ELSE!


NEVER give up seeking medical answers!

DocGomer Doctor of, Been There, Done That.

Gomer,

that was a tough situation, MS diagnosis was not where it is today back when you first experienced issues. You were clearly feeling things that were not satisfactorily explained by Diabetes. In this case your statement..."NEVER give up seeking medical answers!" was the right way to go.

But how about if you have a solid MS Diagnosis, supported by MRI, LP and other standard tests. Should you keep seeking medical answers for every new symptom that appears or do you already have the answer.

At first I thought the statement was in reference to Med's.
How do you feel about seeking medical answers that are injected into your body? As a person with PPMS, I am not confident in the benefits of the Avonex, Copaxone, etc. .
For me, I am putting a heavy emphasis on non-medical answers.

I will be trying Amprya, knowing that it will do nothing to slow disease progression. I'm hoping I start getting around a little better...symptom management.

It looks like I'm on an every six months schedule with my Neuro. That works for me as far as medical answers.

[dawlfin]

Question for Des

Good luck with it!

Des, I was searching cervical cord lesions and I saw one of your posts and had questions for you. I have not been in MS world as much lately and I do not have access to buddy list etc. I have disc disease in my neck and MS and will have an MRI tomorrow that will look for MS lesions there for the first time. The other times my neck was imaged for orthopedic/disc issues and not for MS. Why do MS docs not scan the neck for MS lesions??? Are they that rare? Is there special settings that the tech should use to best visualize lesions in the neck? Can the inflammation of disc disease create a "home" for a new MS lesion?

Thanks,
-Dawlfin

[believer]

believer

My husband has SP. His MS was confirmed in 2003. That was when he had his one and only MRI. We live in Canada, so MRI's are paid by the gov't there is a long wait list and only given when thought necessary.
My question is .....what are the benefits of having follow up MRI's and knowing what kind of lesions one has?

[Des]

Des, I was searching cervical cord lesions and I saw one of your posts and had questions for you.

Why do MS docs not scan the neck for MS lesions??? Are they that rare? Is there special settings that the tech should use to best visualize lesions in the neck? Can the inflammation of disc disease create a "home" for a new MS lesion?

Thanks,
-Dawlfin

Sorry, Dawlfin, I haven't been online much lately and missed your post. As to your questions, I am certainly not a doctor of anything, just an MS patient.

The MRIs I've had have been either of the head only, or the head and spine, too. I assume (something I should know better than to do) that the brainstem is included. I haven't heard of MS lesions on the neck, I don't think, just the brain and spine. I'm not at all saying there aren't any there, just that I haven't heard of them.

Your doctor probably decides what areas will be covered by the MRI. Talk to him or her to get medical answers to your very good questions.

[Des]

Welcome, believer, and I don't know the answer to your question about MRI's. Has your DH's doctor prescribed one?