Page 2 of 3

Posted: Thu May 28, 2009 5:10 pm
by Wendigo
[quote="Lyon" If we could only identify ONE thing unique to the active MS disease process we could finally get some conclusive evidence under our belts and medical advancements would snowball from there.[/quote]

My MS was diagnosed after a fall flat on my back off a high stepladder onto lawn. I didn't see a doctor because there were no symptoms, just shaken up and prayed nobody saw me :) I had pruning shears in hand and was lucky I didn't impale myself in the process. Over the next few weeks started to feel drunk, dizzy, started tripping and falling a lot, fatigue. I wondered if I had injured myself in that fall and saw a neurologist. I had all the lab, EMG/nerve conduction/MRI studies, not lumbar puncture though, and MS was arrived at by excluding other known causes.

I think it was probably just a coincidence, the fall and first attack of MS. I'd been tired for years and years, supporting and raising my kids alone, so fatigue was my first name anyway. Maybe the trauma precipitated the first attack? Who knows. The first attack in 8/2007 was also menopause for me, a possible hormonal relationship in my case.

Posted: Thu May 28, 2009 5:27 pm
by Lyon
..

Posted: Thu May 28, 2009 5:57 pm
by Wendigo
Lyon wrote:
Wendigo wrote:I think it was probably just a coincidence, the fall and first attack of MS. I'd been tired for years and years, supporting and raising my kids alone, so fatigue was my first name anyway. Maybe the trauma precipitated the first attack? Who knows. The first attack in 8/2007 was also menopause for me, a possible hormonal relationship in my case.
Among the strongest "common thread" amongst the inflammatory diseases is that times of stress/injury/weakness commonly precipitate attacks and thereby diagnosis.

Damage on MRI at diagnosis would show that you "had" MS long beforehand but probably every factor you mentioned was part of the chain of events which caused you to seek a diagnosis at that time.
How often do most patients get MRIs? Mine was done in late October 2007. The MRI report says there are tears and bulging disks in my neck, osteophytes, etc., Supposedly my lesions are in my cervical spine, not much if at all the brain, although the MRI report of the brain says that although findings are nonspecific, in a patient of this age, 51, demyelination should be considered. So, all the stuff they did find on MRI didn't just happen in two months' time, even the degenerative changes.

I was actually relieved in a way at the time to hear MS - the neurologist had given a wide range of possible causes, some much worse than MS.

Posted: Thu May 28, 2009 6:07 pm
by Lyon
..

Posted: Thu May 28, 2009 6:15 pm
by Wendigo
Lyon wrote:
Wendigo wrote:How often do most patients get MRIs? Mine was done in late October 2007.
Good question. I don't know the answer. Hopefully others will jump in.

As part of an active clinical trial my wife had periodic MRIs but now hasn't had an MRI since early/mid 2008.
I was just reading in another thread on this board about MRI machines. The 1.5 Tesla used for my MRI appears to be considered bottom of the line.

What made you make the decision to stop medical treatment on your wife? Have you pursued alternatives on your own? How is she doing, if I might ask?

Posted: Thu May 28, 2009 6:28 pm
by Wendigo
Lyons, I'm reading the exercise and MS report.

"It seems likely that many of the impairments seen in MS patients can be attributed to inactivity, rather than nonreversible tissue injury."

That is a profound statement.

I wonder why the decreased strength in the lower extremities as opposed to upper?

Posted: Thu May 28, 2009 6:37 pm
by Lyon
..

Posted: Thu May 28, 2009 6:43 pm
by Lyon
..

Posted: Thu May 28, 2009 6:55 pm
by Lyon
..

Posted: Thu May 28, 2009 6:55 pm
by catfreak
On the MRI thing.

I get a T3 MRI every six months.

Cat

Posted: Thu May 28, 2009 7:05 pm
by Terry
Had 1 MRI spring of 2006 for diagnosis. Never had another.

Oh, and
A 1.5 is about the bottom of the line but, like other things in life, to a large degree, how you use it can be as important as size.
No comment, just thought it was funny and wanted to see it in print again. :lol:

Posted: Fri May 29, 2009 6:52 am
by Wendigo
Terry wrote:Had 1 MRI spring of 2006 for diagnosis. Never had another.

Oh, and
A 1.5 is about the bottom of the line but, like other things in life, to a large degree, how you use it can be as important as size.
No comment, just thought it was funny and wanted to see it in print again. :lol:
I missed the humor until you pointed it out - I'm thinking it had to have been intentional, and brilliantly said :)

It iseems ridiculous that someone undergoing workup for a bunch of scary and life changing symptoms with an equally scary list of possible diagnoses being thrown at them should have to think about the quality of equipment and these machines. I had one neurologist insist on repeating my MRI in the local hospital, better machine he said. Who knows if it would have made any difference in my treatment - except for possibly being a higher quality image for future comparison purposes.

Posted: Fri May 29, 2009 7:35 am
by Wendigo
Lyon wrote:I couldn't wait and searched for the phrase you mentioned and in reality it's probably a little misguided on the part of the researchers, but not profound at all
article wrote:It seems likely that many of the impairments seen in
MS patients can be attributed to inactivity, rather
than non-reversible tissue injury. This assumption is
supported by several studies that have shown marked
improvements in almost all aspects of the
physiological profile of MS patients who have taken
part in clinically monitored exercise programmes.
The misguided part involves that there probably is non-reversible tissue injury long before a person is even diagnosed but, as mentioned earlier in this thread, activity promotes healing/plasticity, which includes repair, replacement and rerouting, so what the writer dismisses as lack of non-reversible tissue injury is actually the correlation between activity and the healing process.

For the most part the end result is the same.
I'm not qualified to evaluate the quality and conclusions of this obviously limited study. It is interesting to read something about MS and exercise though. My reading comprehension ability also isn't what it used to be.

It seems the endurance part of the study pooped out for various reasons but it was suspected there may be a correlation between increasing muscle strength and endurance? The term "nonreversible" damage is puzzling to me wherever I see it. Are there standards used to define this?

My left hand is weaker than my right and can't pick up a dime with my left hand fingers. I may never be able to get normal function back but have never tried consistently to "improve" function - isn't it logical to say that until every effort has been made to improve function it's not correct to call my deficits nonreversible?

Although I am at my ideal weight for height, my body feels "mushy" compared to what it was pre-MS. How does anyone determine what portion of that is MS related and what is reversible and caused by decreased use?

Posted: Fri May 29, 2009 7:54 am
by Wendigo
Lyon wrote:
Good example and I think the medical community stands to learn a lot in the next few years regarding clearer definitions of what REALLY are exacerbation's/attacks and what are temporary symptoms due to damaged and overworked neural circuits, and also whether or not overworking damaged neural circuits is capable of causing additional damage.

Even though I don't have MS, I can understand your point about wise use of finite energy reserves!

Bob[/quote]

My daughter accidentally slammed my thumb in the car door the day before yesterday. It hurt but was not broken. I turned my head lightening fast to the right when it happened and yesterday was unable to turn my head to the right due to pain, like a whiplash injury. It seems logical this was an extreme example of "overworking" damaged neural circuits - whether it caused additional damage, don't know yet. My neck is where my MS lesions as well as lots of degenerative changes are. Possibly some neck muscles could be strengthened but this will probably be a vulnerable area for damage the rest of my life.

Posted: Fri May 29, 2009 8:17 am
by Wendigo
I know there are no answers for many of the questions I have. Each person has to find their own answers and sometimes the best you can get is to know that at least you're not alone.

As if handling the disease weren't enough, there are financial and social issues that go hand in hand with it also. Social Security disability is not enough to live on, savings are limited and being used up, and while I am able I'm brainstorming for ways to see a way to supplement that, shopping, buying and selling.

Without MS, it is a given that the way to increase endurance, stamina and strength is through exercise. With MS, it's a blessing to wake up, do a systems check and find that all parts are working the same as when you went to bed.