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Old 05-08-2007, 10:45 PM #11
jena1225 jena1225 is offline
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Quote:
Originally Posted by lailavia View Post
I just had an mri and started a thread similar to this...one bright lesion was found on my last mri and I am to see my neuro next week...he ordered it due to a migraine that is running on and on I wonder what he will say. I have cfs, fibro, or is maybe lyme or ms? I am debating on bringing hubs along to DEMAND complete testing as I don't want a brush off as it being migraine associated or what not....I have all kinds of sx....well enough to warrent further testing in my opionion. Not just like oh I have a headache...I mean I have body aches, weakness, new body aches, new weaknessess, etc....
Hey lailavia! I would derfinately bring along your hubby! It is always so helpful to have someone else there to take in all that you don't. Also, I think it's good to push for more MS testing, as well as Lyme and the other things. The lesion very well could be from your migraines, but that doesn't mean you don't have something else going on... Good luck!
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Old 05-09-2007, 06:49 PM #12
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Jenna...he would have to take a half day. But this doc is so fast and always rushes, rushes, rushes, not the kind to sit and chat, ha! He actually did an mri in 2003 to rule out ms cause of my sx then. I just get so nervous and start stuttering and he is gone......Dear hubs isn't much of a "professional patient" like me LOL he might not even be of any help.......I feel like asking doc,,,,if this was you or your wife or daughter what would YOU do? Is that even acceptable? Or is it acceptable to say you "want further testing to confirm beyond a doubt?". I am so tired of fighting with docs. I do have some good ones at least...that i can talk to... but I need this one right now...
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Old 05-10-2007, 06:22 AM #13
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Hi Suze:

Kingrex is a MRI technician and quite knowledgeable. If it were me I would insist on gandolinium and a neuroradiologist. An MS neurologist would be an asset too.

Evoked potentials would give the neuro a good baseline.

Miss you over at BT. Nice to see you are out and about.

All the best.
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Old 05-15-2007, 08:08 PM #14
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for MS, the next step is a spinal tap to analyze the spinal fluid for signs of MS. A positive test coupled with a suspect MRI are the two thins that would determine a MS dx. Some of your symptoms sound like MS, but symptoms are so varied with MS that they almost do not matter (except, of course, to you). Take your MRI to every first visit with any doctor. Your neurosurgeon might be a great surgeon, but that does not make him a good diagnostition.
I recommend you look up the MS society and visit the office closest to you. They will be very helpful especially when it comes to selecting a neurologist. And they know where there are good ms clinics....it is worth a visit to one of those. I traveled several hours to go to a Ms clinic in Portland OR and it was the best thing I did. my records were reviewed by a team of doctors so I got the advise of the best one. It turns out that they did not think I had MS, instead I had a leukodystrophy (a family of fatal white matter diseases that mainly affect children) I spent the next four years tracking down what I have, but now I have similar opinions from Oregon Health and Science University the genetics lab at the UNIV of WA, and a research group from NIH. But that knowledge will help me down the road.
So, I think you are right, you do have time to get this right. I spent three years fighting a disease that I did not have (MS) and all I got out of it was a little bit of an education on the disease, along with a lot of time and energy wasted. But now I can pick and chose the best thing for me to do, and I can determine why things are happening to me, and what it ultimately means. I know I have only a few good years left to live, for instance. Ultimately dementia will overwhelm me, so my wife and I keep track of all the problems dementia is starting to cause, we can then start to plan all of the end of life concerns, and together we will know when it is time to apply for assisted living care. (my wife and son are both disabled with final stages of COPD and a mental illness, so it is important that I participate in all of these decisions)
I grew up in a medical community. My father was a neurologist at the mayo clinic. I mention this because I am always a bit perplexed at people confidence in a doctor's certifications. I never thought they meant much. I was always referred to doctors by my father who knew their work and reputations. And there a lot of highly recognized physicians who my father thought were quacks including a nobel prize winner (for the discovery of cortisone) and there were many many unrecognized and undecorated doctors my father thought the world of (including the doctor who did most of the work on cortisone)...so selecting a doctor is difficult, it is a bit of a crap shoot. that's why the MS society is valuable. They talk to and track the patients and they hear the complaints, and they know the doctors in your community...so does you family physician, so you might ask his advise. it is a big part of his job to make sure the doctors you go to are good ones.
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Old 05-15-2007, 11:22 PM #15
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I am stepping back a bit in the discussion; the neck problems and Neuro-
surgery/Neuro Surgeons. My neck broke, collapsed vertebrae, and I had a
wonderful Neuro Sugeon who literally saved me from Quadropelgia. He shored up the area with cadaver bone and a titanium plate. I began to get better,
but had so many other symptoms that didn't improve, actually got worse.
He finally suggested a Neurologist, made the appt actually. It took a while,
but the Neurologist did diagnose me with MS. (all the usual, LP, MRI, Evoked
Potentials and just observation)

My point? The symptoms of neck damage and the symptoms of MS are
very similar in many ways. It is possible to have both MS and spinal problems
at the same time. However, I still have some questions about whether spinal lesions or spinal cord damage are the source of some of my symptoms. The metal plate makes it no longer possible to do MRI on my neck. Current Neuro just says assume it's all above the neck. Not totally satisfactory, but until I find another Doc, will have to do. Good luck.
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Old 05-16-2007, 12:45 AM #16
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I think what keeps comming to my mind is how many times it has seemed that folks who have a major ordeal in thier life.....either very stressful (divorce, death, los of job...so on) or who have had a major medical problem, (sugery or accident so on) seem to have an exacerbation closley following.
If you didnt know you had MS and went through an ordeal and it made the MS flare up it would seem it was just from the ordeal.
Wow that doesnt make much sence to me when I read it back to myself lol....
Good luck and maybe you should look back over the years and figure how often your strange SX came about after a major ordeal in your life!
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Old 05-16-2007, 08:10 AM #17
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Kami, I have heard that as well. That C-Spine injuries can cause sx's closely related to MS sx's. I was also surprised that the C-spine affects the legs. So, if you get weakness in the legs, what is it from? MS, or neck? That has to be frustrating, especially not being able to get an MRI.

FFM, yes, stress is a major factor in MS relapses! It can definately bring on flares and psuedo's. When I get even the slightest bit stressed, my hands go wacky big time! and it also brings on my clonus, and myloclonus in my leg. I have a rather large "black hole" (2 CM) I got at onset in 1993, that I can blame for all that!

Also, at the time of my onset I was in EMT school. We were in the stage where we had to lift 180lbs mannikins (sp?) up and down stairs on stetchers. I KNOW that is was brought mine on. THAT is major stress for a 5'2", 100 girl!
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