willingtocope

Is there a doctor in the house?

Recommended Posts

Thanks for the prayers, people. Howard (..."our father who art in heaven, Howard be thy name...Laugh In, 1972...) has enough to worry about besides little old me, but, a bug in his ear couldn't hurt.

I, too, was shocked that MS showed up at 58-60, somewhere in there. I'm thinking there still might be some relationship to Statin Induced Myopathy or even something similiar like Primary Lateral Sclerosis. Probably doesn't matter much...the prognosis and treatments are pretty much the same.

Link to post
Share on other sites

start doing enzyme therapy and cut out all sodas and any caffeine drinks.

cut out dairy and store bought bread too.

eat meat and fresh steamed vegetables and fresh fruits. drink a gallon of water a day

i use serrapeptase 10 pills 3 times day 1 hour before and two hours after meals and nattokinase 2 pills with every meal.

you will start feeling better in about 6 to 8 weeks. but don't stop, you gonna need this for at least 6 months, your a mess

Link to post
Share on other sites

I just finished reading through Dr. Wahls' site. The MS guy I'm going to see actually assisted with her studies. Encouraging!

Only potential stumbling block I see is she has Secondary Progressive MS...and the Mayo says I have Primary Progressive MS. I'm not sure where that enters into things....

Link to post
Share on other sites

So, we went to U of I yesterday. The MS spe******t and his intern were both very informative and somewhat helpful.

They both pointed out that its very unusual for someone in their late 50's to suddenly develope MS. They asked if there were any "episodes" of weakness, or vision problems, etc. in my 20'3 or 30's that didn't have a good explanation. There were none the either my wife or I could think of.

At any rate, their conclusion was that since the MRIs show the lesions "lack acuity", that they're probably fairly old...therefore, I've probablly had MS for most of my life...just a very mild form, with few outward symptoms until now. In their opinion, that makes it "Secondary Progressive MS", which is somewhat treatable. Still no cure, but I may be able to improve my "quality of life".

I'm back on Baclofen. I was taking 20mg / 3 times a day. THey've upped the dosage to 20mg / 4 times a day...and said we'll continue to experiment from there. Apparently, the max dosage is 140mg so I've got lots of room to play with. The doctor did say that we need to be careful not to remove all of the spasticity right away because that's what's holding me up sometimes.

He suggested I start exercising regularly and build up muscle mass again. (And, being a little s**t, all of about 5'-6 and 160 pounds, he suggested I lose weight. That's not gonna happen. In the past, exercise just turns my fat into muscle, and I wind up weighing about the same...250, 275 somewhere in that range).

Anyway, he seemed confident that if I do exercise (rather than sitting around complaining that I can't move), I will improve.

We'll give it a try....

Edited to add: They are both very familiar with Dr. Terry Wahls' case. They point out that no one is quite sure why she has improved, and her self imposed regimen is quite strenuous. Excerise as much as 5 hours a day...including 2 hours in her private pool. The diet she recommends is also unusual for most people...things like 14 cups of fruit daily. And, on the occasions when she has to travel for her job, and can't stick to her program, she relaspes. She's written a book...I'm going try to get a copy...but, I don't see how I could manage the time she puts in.

Edited by willingtocope
Link to post
Share on other sites

Okay, so I've got MS. Secondary Progressive. Use a wheelchair to get around work, but I can still walk with a walker at home. Big deal. Annoying as hell, but I can live with it.

Here's my problem. I'm 6'-2. I've got a 30 inch inseam, so that says my height is from my butt up. I've got a 2005 Chysler MiniVan. DW does all the driving. Getting me in the car is getting to be a hasslle. Because of the way I'm built, I can sit in the passenger side doorway, and my head brushes the top...so the old sit on a slide or turntable and pviot your legs in trick doesn't work.

We've been using a one step thingy with a long handle that fits just under the lip of the door. I put my right leg up on it (right leg can still do stairs) and lift myself up onto the step using the roof of the car and the top of the car doore. Then my DW helps me lift my left toe up onto the step. I hook my cane under the left foot, and she helps me push it into the floor of the car. I can then grab onto the sissy bar with my right hand, duck way down so my head fits through the door and lift/swing mysefl into the seat. She helps me move my legs into position so I can sit up straight.

This routine also works if we're parked next to a curb, but its more difficult to get my left leg up.

Anyway, the problems is....this is getting harder and harder to do. DW is not strong enough to lift my 275 pounds even if the left leg didn't go spastic at just the wrong time.

Suggestions?

(No money for a wheelchair van. I'm trying to get hands on some Ampyra, but, the paperwork has already taken a month and there's not gurantee that will help.)

Edited to add: So Karma smiles on me (or maybe ****s, its hard to tell). The "Speciality Pharmacy" called yesterday...Ampyra is in the mail...should have it next Tuesday.)

Edited by willingtocope
Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.