willingtocope

Is there a doctor in the house?

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Willing, at least you have an answer now. And you can initiate treatment. Therapies for these types of ailments have gotten so much better with new breakthroughs coming everyday.

Stay strong buddy.

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Yep. Also feeling somewhat vindicated...on two fronts.

1. Heritiary Spastic Paraplegia is NOT my problem. Any spasticity (and the Physical Therapy MD I saw at the Mayo said he saw very little) would be related to MS...NOT HSP. SP is a symptom, not a disease in this case.

2. Statin Induced Neuropathy, which I've suspected from the beginning, is possibly the initiating factor. Statins "control" (i.e., destroy) cholesteral. Cholesteral is one of the key ingredients in building (and rebuilding) the mylelin sheath that protects nerves. Some clinical studies (NOT done by the drug companies) do indicate a relationship between statins and the development of MS in older patients.

I'm finally feeling like, while things may not return to "normal", at least they'll stop getting worse.

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It is always hard to know how to respond to someone when they get a chronic disease, there is the part of you that is heartbroken for someone to get a diagnosis like M.S. and then the other part that thinks well its not that bad there are better treatments and meds.

I guess the pessimist and optimist collide.

Honestly I'm disappointed that it was a diagnosis of M.S. and its not what anyone hoped for.

It is a step in a new direction, but if you inform yourself and fight ms the way you did snarky creditors I know you will be fine.

My well wishes and good thoughts are with you and your family.

I'm not going to feel sorry for you, I know your not the feeling sorry type.

Instead I am cheering you on and rooting for you in this new "battle".

Please keep our "RA RA RAHs" close to your heart.

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Yeah, actually I'm feeling a little better about the whole thing. Met with the Mayo's "MS" expert yesterday, and his diagnosos is "Primary Progressive Multiple Sclerosis". The good news is, although it likely to progress to point where I'll need a wheelchair in a year or two, its unlikely to affect my cognitive abilities. It ain't gonna kill me. And, I'll be able to work for as long as I need to.

There's no magic pill or surgery...but, with exercise, I should be able to improve somewhat.

We talked about recent experiments I found on the internet regarding cholesteral and MS. I've had chronically low HDL as far back as I can find records...18 years. Average about 38...low of 34, and one high point of 47. The 47 happened after I stopped statins, and started taking 3000mg of niacin daily. My LDL has never been terrible...high of 174...but because of heart disease, the doctors have tried to push it below 100 with the statins.

The MS guy and I agree that restarting Niacin might be worth a try (I stopped because one of the docs at U of I pooh-poohed the idea). In the same way the "good" HDL scrubs plaque from arteries, it plays a part in the building of myelin. Its unclear whether it will rebuild damaged myelin, but since niacin can't hurt me, we'll see what happens. He'll also be prescribing some other vitamins and supplements that may at least stop the progression.

DW is majorally pissed off at all the other neurologists and radiologists I've seen over the last 3 years. They looked at the exact same initial MRIs and saw nothing. She's saying they could have seen this earlier.

Anyway, guys, thanks for the good thoughts (and the rah-rah's). I'm too curious about life to give up, so I'll be fighting this untill they plant me in 30 years or so....

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My experience is that while medicine is sold off to the public as "science" it at best is a mix of science and art. Any doctor could paint you a diagnosis but only a master could paint you a masterpiece aka a proper diagnosis. Like art the masterpieces are harder to find and cost significantly more... most people are ok with the flea market velvet painting of elvis and will be happy with it, there are a few of us though that will have symptoms aka tastes that will need a monet.

You got your monet, now you have to decide where you will hang it.

(Aka what you will do with diagnosis)

The funny thing about western medicine is, it absolutely doesn't treat diseases it treats symptoms. We have 100's of different types of pain killers yet no treatment for a common cold.

When you read about new drugs you'll often see a disclosure, although it is not fully known how the drug __________ (aricept, cymbalta, etc) affects the ____________ (fill in disease or body part) it has been proven effective in several studies.....

Blah blah blah!

Niacin and anything else you feel helps probably does help, I personally think for the most part people are the best judges of what works and doesn't work for them.

Give your wife a hug and let her know that you all will never settle on a velvet elvis again!

Edited by ditaloca
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Give your wife a hug and let her know that you all will never settle on a velvet elvis again!
In the words of Ray Ramono (on Everybody loves Raymond), "this is not huggable" right now. DW is major league pissed right now, and major league depressed. She's ranting against everyone else involved, but I'm sure the real culprit in this little melodrama is me. I'm the one who lost our business and chance at fame and fortune and pushed us into BK and forced us to suffer the humiliation of living off our son for 9 months and utlimately got us asked to leave by his wife and got us stuck in nowhere iowa where she doesn't have her big house and friends and now I've created a reason why our retirement isn't going to be traveling and enjoying life. She'll get over it. But, I really could use some animal tranquilizers and a blow gun...if I could stick her from say 40-50 feet, I'd be safer.

Anyway, now that I'm pretty sure I know what I've got, I'll figure out a way to deal with it. You're right...medicine is an art, not a science...and I'm at least as good an artist as some doctors I've met.

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Fame and fortune is overrated, just look at britney spears!

Ok so it won't be how you planned, that doesn't mean it won't happen.

Use your lessons learned and turn them into a new way to fame and fortune.

Become a voice for healthcare reform and use that platform to travel.

Become a advocate for early detection of MS and use that to make money.

Goodness work with some vitiman people and get a good combo of vitimins and niacin to help with MS, do a jack lalaine juicer style infomericial.

Make millions, don't forget to kick me back some cash for the idea, or write a magizine article on having to move back in with your son.

Get good at blow darting tranqs by practicing on the wife and then get a job doing it pro style and use it as a free trip to safari life in africa....

This isn't the end of a dream, this is the begining of a new dream.

Edited by ditaloca
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Alrighty, then. Learning to live with MS. Still no pain, but, legs are probably slight worse than last time. Couple of minor problems.

Socks. Can't life my legs to get them on. Tried one of those "sock putter onner' things with the terrycloth over plastic and the straps...managed to break the straps. Gonna get me anotheer one, and bigger socks.

Walkers. Use one continually now. As a matter of fact, I have four. One on the main floor of the house with wheels and a built in tray. One in the basement...the plain old four poster variety. One that is a combination wheeled walker/transport chair that I broke (not meant for normal size people). And another that wheeled walker/transport chair that I use to get in and out and around work (heavy duty). Going well, except I still tire easily. Asked PCP for a script for Amantadine which is supposed to help with the fatique.

Car. Wife does the driving (she's not real happy about that). But me, getting in and out is a major effort. We've got a Chrysler Town and

Country, so, plenty of room for me and my walker...but...getting my leg up high enough to get over the door sill is a problem. At home, in the garage, we've got a 10 inch step stool that I can maneuver into position and get my "good" leg onto...then I use a cane to hook my "bad" leg under my foot. DW gets behind me, and pushes on my knee to move my bad leg in, and then I can squat down and slide in. The problem is...most of my height is from my butt up. I usually wind up scraping my head on the roof as I get in. Its even worse getting out. Neck doesn't bend, so I have to squeeze through the door.

Getting in the car in a parking lot is a major effort. Either we have to carry alll the equipment with us, or wife has to pull up next to a curb, and I can usually use the extra height to hook my bad leg into the car. Major pain.

Anyway...looking for a new car. Ideally, no more than 5-6 inches ground to door frame, but with a door big enough to put a piano through. And it would be nice if it had hand controls so I could drive also.

Ideas?

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Hand controls can be added after market on almost any vehicle.

When my mom used to work in healthcare aid people were fond of trucks that had "van conversions" these trucks have big doors and roomy seats and lots of equipment can go in the bed of the truck. These conversions put the truck 2 inches off the ground and allow seatins to swivle and manuever. I don't know that a truck 2 inches off the ground is really a truck though.

Gas mpg very very bad.

Expense is moderate.

We knew a guy who had one and the seat rotates and sorta moves almost out of the door (edge of door frame, he'd sit and then unlock the swivel and turn it so it was facing the front of truck not the door anymore and it sorta lined up inside.

He had tied a rope to the door handle so he could close the door and off he'd go. He said without rope it was a two man job. (Door is huge and opens really wide)

He didn't use a walker but a cane (the kind that is like a tree trunk and has four feet with rubber ends at bottom.

His conversion was done on a dodge truck.

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Yeah but buying a new wife that will swivel and lower you to the ground is very hard to come by. Insurance and related advocacy groups often get people discounts...!!! Might be worth asking especially since this mobility allows you to work. .. state run rehab. And vocational services will often help too.

Either way I say get flames painted on the side, there's nothing more confusing or scary than a Chrysler with flames and a handicap license placard. .. maybe a novelty horn that howls like a wolf? (The overall statement lends to the I've got nothing to lose, and imagine the wifeys face when she sees it, priceless)

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Willing before you buy a car can you meet with a physical therapist? They might 1. can teach your wife how to move your leg with less effort and 2. know of some adaptive tool to help you get in or out of the car. You have a great attitude ~

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Well, I figure it ain't gonna kill me, and as long as I can still work, I might as well make the best of it. Of course, if I win the lottery....

As a matter of fact, I've just started both Physical Therapy and Occupational Therapy at the local hospital. I'm not sure what the PT does, but after 1/2 hour with her, I can actually walk...for about 20 minutes. She says she's doing what is essentially accu pressure on the sclerosis areas...weird...but it works.

Had one OT session so far/ She gave me some tubes for the edema in my legs, and that helps also.

I'll see them again Monday...I'll be sure and ask about what support is available for new cars.

DW and I have a scheme worked out for getting me in our car. It works without too much strain on her. I just keep bumping my head on the shape of the door.

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Wow - sorry it is M.S. - but like everyone else said - at least you have your answer.

You do have a great attitude - and I am super pissed at those docs who couldn't figure out what was going on for so long! TWO WHOLE YEARS

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Yep. Really pissy thing is the neurologist at the Mayo looked at the same MRI's that were done in Des Moines and found the lesions right away.

All in all, it doesn't really matter. Catching it two years earlier wouldn't have made much difference. No drugs or treatments will stop its progression...there's some things that will slow it down, and I'm in those treatment programs now.

The semit good news is my PCP is pretty easy to work with. So far, he's letting me try "alternative" therapies (while looking over my shoulder to make sure I'm not doing anything flat out stupid). 130,000 IU of Vitamin D a week. 3000mg of Niacin daily. Both physical (accurpressure?) and occupational (working out the edema). Minor improvements.

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Alternative therapies are really interesting.

Some of course are hocus pocus, but some seem sound.

I think its awesome your PCP is open to that and even more awesome that he oversees it.

I've had pcps tell me if your gonna do that stuff, fine, but I don't wanna know about it unless its contradictory to my treatment.

Sounds like you've got a good pcp.

I've tried all kinds of natural therapies and alternative healing tech.s ... so if you wanna exchange some fun stories I can tell you about ....

Copper blood cleansing.

Bee venom...and bee propolis

Magnetic reasonance

Ect ect ect......

Fun stuff.

I think the best ever was in sedona az and the vortex and a 'healing journey'

Whatever I had gotten dehydrated and was hot and tired, this hippido hippy is trying to convince me that I'm getting better and that the weakness is healing...wth....

Finally he puts a rock in one of my hands and a leafy stick in the other...has me hold my arms straight out at my sides. He then 'evenly' pushes down on my arms and I'm supposed to resist my arms being pushed down, of course one of my arms is weaker and gets pushed down easier than the other. But hippydo starts in with oh you are very dehydrated see how the arm that went down first held the rock? Well that's be cause the tree/leafs wet life force was actually nourishing my body...omg so lame.... I was 15 or 16 and knew this was lame.

I've never needed a rock or a tree to know I'm dehydrated, usually my plethora of sweat and dry mouth are pretty good indicators... if those fail, usually I get thirsty ....hmmm I dunno.

Sounds like pt is going very well....walking for twenty mins is better than not at all.... every minute helps the muscle from atrophy or loss of neuro connections....very promising.

Maybe check out amino acids, htp5, sam-e, omega acids, these are reportedly good for keeping neuro pathways functioning and 'lubed' and allows brain to increase functions.

Of course it could be a rock in the hand....but maybe worth a try?

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Yep, PCP is a good guy.. Maybe not a great doctor, but he's doing okay I think.

Met him last Friday. Cholestral check. Total 200, but more importantly (in my mind) HDL at 43. Niacin seems to have some positive effect

Started 100mg Amantadine twice daily. Seems to help with the fatique.

The way we split up the Vitamin D is 50,000 units twice a week. Could be all in my head, but on the day I take the pill, things seem a little better in longer spurts. Hard to tell.

Big problem at the moment is getting into our car. We've got a 2005 Chrylser T&C. Its about 4 inches too far off the ground, and the open space between the seat and the roof isn't big enough for me to get my head and trunk into, so I can't sit down on the seat and then swivel around.. If I go in head first, I can't get my legs up. If I use my cane to lift my left leg (which is the less cooperative one), I can't always lift it high enough to clear the door jam. DW usually has to slide over to the passenger seat (a major pain for her) and help me lift my leg...then, I can duck my head and slide into the seat.

I'm looking for something a little more big-clumsy-guy-whose-legs-don't-work friendly, but between work and PT and OT we really haven't had the time or energy to go play the new car game.

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I don't know your feelings but you may want to talk with a naturalist or homothopist (sp) they usually can tell you best combo, times and diets to go with vitimans and such. Maybe a way to get the effect of vitamin d to last a little longer?

As for the car and legs. I don't blame you its amazing how tiring being sick can be, and noone realizes getting better (or just not getting worse) is often more than a fulltime job.

Maybe a forum or blog of others with MS could help with the search of proper car....or a trick or tip so the dw doesn't have to do the slip and slide to help.

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I've asked PCP for a MS Spe******t in the area. I'm looking for someone on the cutting edge...willing to work with me to do more than the "drink plenty of water" type treatments. When I was at the Mayo, they told me they had some people working on new therapies, but, then in the next breath said "We don't see any reason to schedule a follow up for you." So I guess I'm looking for omeone within a reasonable distance of home. The problem is...did I mention I'm in really small town in the middle of nowhere?

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Thanks for the links!

The one from Iowa is particularly interesting, because I have an appointment next thursday with Dr. Shivapour, the MS spe******t at U of I Hospital. Since the woman in the story is a doctor there, I would hope that Dr. Shivapour had a hand in her recovery. Encouraging!

(Now, just have to hope we don't have another Iowa blizzard, ice storm, or flood in the next week).

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((((WillingToCope))))

I'm shocked at what an ardous journey you were forced to travel to arrive at an answer! When I started reading your thread, I was actually thinking Stiff Man syndrome; the mention of numb spots in your back suggested otherwise, but I'm still shocked it actually turned out to be MS at your age! :shock:

I'm saddened by your diagnosis but comforted by the fact you have finally arrived at your answer. I hope the fact you can now plan a path for yourself will give you strength and boost your spirit.

You and your wife are in my prayers. Xheart_smX

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