Symptoms as Diagnostic Tool

[ELT]

Well, I phoned the MS Society of Canada today.  To ask some questions.  I asked the man if what I was about to describe sounded like trigeminal neuralgia.  I explained that quite a while before I had gone to my gp, who sent me to my neuro about the pain.  The ruled out an allergic reaction to seizure meds, deemed it neuropathic, treated it with anti-seizure meds, and left it at that.  

It was a stabbing, shooting pain in the joint of the mandible, that radiated outward, when i began to drink something, sometimes brought on by other things.  My lips itched and burned and were numb, as was my tongue, like shingles.  My jaw ached, my skin itched, burned and was numb.  

The man at the ms society said that was the best description he had heard.  

I then described the pain in my legs.  Yes, it fit meralgia paresthetica.  

"Bilateral?  You're right, no it doesn't fit anything but ms.  Keep in mind, though that your doctor will have to keep taking mris, lesions may not show up for a time.  Your symptoms are consistant with multiple sclerosis, only."

I also described my myriad other symptoms, some so mild, you don't consider them as symptoms.  But, I do know I have asked my doc about them all, at one time or another.  The weakness, fatigue, fasciculations, eye stuff, bladder stuff, bowel stuff, SENSORY stuff.  Pherw , LOL
He agreed, it wasn't anything else.

So, when I go see my neuro after my evoked potentials, I will say, I know what I have that you have treated me for all this time.  If it only fits ms, why not treat me like I have ms, maybe slow things down?

Hmmmmm, how much do I want to drive my nice neuro nuts, tho.  

Erica

[ELT]

And, thanks, really, the info is wonderful, I'll reread it 'til the major stuff sticks.  It might take me a bit.  But, I'm learning the technique, LOL.  

Erica

[ELT]

I figured as much, but, I had to tease.  LOL  tehee

Erica

[Rena705]

ERICA...My neuro is a she and Quix originally wrote it to me...

You will have to change the shes to he's!!! ha ha ha

[ELT]

My hot young italian? neuro might not like you calling him a her, ;) ;)  LOL

I am going to make him answer me, this time.  I'll ask for first time.  That may be all it takes.  We'll see after April 14.  

And, yes, EXactly what you said, 'though, I don't think I could repeat it, have to practise copy and paste, LOL.  

That's why I will confront him about the significance of some of my more specific symptoms.  I don't want things to progress.  I want to be better than I am, at least not worse.  So, I give him a month, then, look out, LOL.

Thanks,

Erica

[Quixotic1]

Hi, just reread what I wrote above.  There is a word that needs changing.  It is the second word in the 3rd paragraph.  It should read "Axonal Degeneration" (and NOT axonal inflammation").  I'm very sorry.

Quix

[Rena705]

Hi Honey...don't you know that there is no limit to driving your neurologist nuts!  This is your life and you need to do whatever you need to do, Right!!??

Did you read what Quix sent me to use when I meet with my neuro if I get an appointment with her after I see my gp next week?  I have copied and pasted it here in case you didn't get to see it but I don't think that it would hurt for you to have this as backup after your evoked potentials...what do you think...???

Along with the comment about "inactive MS" you have to consider the other part of the damage in MS.  We don't often talk about it, but it is critically important.

Besides the Demyelination/Inflammation damage there is an independent type of CNS damage that is know to occur from very early in the disease.  This is "Axonal Degeneration."  Axonal degeneration is the direct destruction of the nerve fiber itself.  It is the part of the damage that is seen on the T1-weighted images as "black holes."  This kind of damage occurs by an entirely different mechanism than demyelination.  And it is more directly related to the accumulation of disability.

Axonal inflammation is shown on the MRI in it's most severe form by the black holes, but by use of special research types of MRIs we know that it is occurring before the black holes even become visible.  This type of damage is what leads to the shrinking of the brain and the gradual accumulation of disability.  As the disease progresses and begins to make the transition from RRMS to SPMS this direct destruction of nerve fibers and nerve cells becomes more dominant and the inflammatory part of the disease less prominent.

So at all time during MS axonal death may, and likely is, occurring and is not related to whether there is inflammation visible on the MRI or not!  So, no doctor can say that MS is not active just because they see no enhancing lesions on the MRI!!!!  The two types of "activity" are unrelated.  The inflammatory activity can be seen on the regular MRIs that are used on patients.  The ongoing activity of the death of the nerve cell and fiber (axonal degenration) cannot be seen until the area is large enough to make black holes.

Furthermore, the degeneration part of the damage is know to occur in the very beginning of the disease and accelerate as the disease moves into it's second and third decades.

So you need to ask your neurologist how she knows that you are not suffering axonal degeneration as a cause of your increasing disability!  You are becoming progessively disabled aren't you?  Isn't that the reason for your current "disability" applications?  She must provide you with an explanation of how it is you are becoming progressively disabled with symptoms that are classic for MS, if the disease is not active.

The third question she needs to answer is that world-wide, people with their first attack of syptoms suggestive of MS who have any abnormalities on their MRIs are being started on the DMDs.  Why is it that you have had, and continue to have, this actual diagnosis of MS and now are so disabled as to need these these disability tags - BUT she won't allow them to you?  Why is she holding you to a different standard than other patients in Canada and around the world to determine if you "need" them?

Do doctors in Canada get a kickback if they keep down the number of MS patients on the drugs?  It makes me wonder.

More food for thought.

I found this really interesting and I don't think it would hurt either of us to present this to our neuro's for further information as to why we should be treated for this disease...what do you think??

Rena