MRI results and more questions

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MRI results and more questions

Postby janereed » Sat Jan 09, 2010 3:38 pm

I have been having MS symptoms since 2000. The doctors back then diagnosed Fibromyalgia and treated unsuccessfully. I finally got off all the meds because they were doing nothing for me. The flare-ups continued over the next few years, each time getting a little worse and the doctors blew me off telling me that is was all in my head and such. In 2004 I have a severe flare-up and finally saw a doctor that agreed that this may be MS. I was tested for Lupus and other connective tissue disease. Had slightly high ANA and 1 positive RF. Everything has been negative since. Again, in 2009 I have a really severe flare-up that put me on crutches. I was intensely sick for 2 months. My doctor sent me for an MRI and the neurologist that read the MRI was very vague " 3mm focus of ischemic change in the periatrial white matter tracts." My doc was convinced that this was proof of MS and sent me to a Neurologist, who told me they were old age spots, I am 38. My doc did not agree and sent me to another neuro who told me they were migraine spots, yet I do not ever get migraines. My doctor has seen me in a flare up and knows something is wrong. He has finally agreed to send me to the Mayo Clinic in order to get some results.
Has anyone else been thru a mess like this? Has anyone been to the Mayo Clinic for a diagnosis? I know they are good, but was wondering what to expect. Isn't lesions in the periatrial region fairly specific to MS? That is what my doctor told me but the neurologists didnt even take it seriously.
BTW, these are my symptoms: severe fatigue, memory loss, muscle pain, burning sensations in my legs, tremors ( sometimes severe), bladder issues, tightening of my muscles around my chest, forget words I am trying to say, stuttering (when I am not a stutterer) and the list goes on.
I kept a journal, when I took it to the neurologist he wouldn't even look at them.
This is all so frustrating.
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Postby shye » Sat Jan 09, 2010 4:09 pm

Janareed,
Sounds like MS to me; of course, i am not a dr, but do have MS.
I think you need someone whose speciality is MS, rather than any neurologist. I've had numerous health issues, and have learned to go to specialists for a diagnosis (but not for their treatment).
I now use an osteopathic dr, using "alternative treatments" for the most part.

Good luck!
Let us know how you do.
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Postby janereed » Sat Jan 09, 2010 5:37 pm

Thank you for the reply, I really feel that this is MS and so does my doc but he says he can't treat me until a neuro says it is..so I am stuck for now. I would like to hear more about the alternative treatments you are using when you get a chance.
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janereed

Postby leetz » Sat Jan 09, 2010 7:07 pm

you just told my story.......dx FIBROMYALGIA 2001---slowly deteriorated MRI showed4 lesions...still they thought nothing....finally 2008 dx Multiple Sclerosis when i was given a spinal tap...seems to me thats the only way to be given 100% MS diagnoses---that way there is no room for dispute---it just is what it is and the bodily fluids say so...wishing you much luck...

GOD BLESS!!!
LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby janereed » Sat Jan 09, 2010 7:24 pm

Thank you. I am finding that a lot of people are very similar to me! I am hoping the visit to Mayo Clinic will give me answers.
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Postby shye » Sat Jan 09, 2010 7:41 pm

I was told that my history and my MRI gave them the diagnosis--that the spinal tape doesn't always give true picture--so no spinal tap for me, yet have the diagnosis.
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Postby shye » Sat Jan 09, 2010 7:45 pm

Janareed-
Am super tired tonight, so need to get to sleep--have a heavy week starting tomorrow.
Will get back as soon as possible re alternative treatments.
But check out the Klenner supplements, check out chelation, check out omitting gluten and dairy, and check out chiropractic--esp of cervical.
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Postby twistymirrors » Sat Jan 09, 2010 10:02 pm

this sounds a little bit like me...the results on your mri. My mri showed a few white matter hyperintensities in both sides of my my frontal lobe...all I've been able to find is that they are found in elderly people, people with migraines, and strokes...I am 27...I suffer from headaches but they are not migraines...i;ve had a few migraines and they are way worse then the headaches i live with day to day.
The neuro doesnt think my problems are neurological and when we mentioned my speech problems that i was having he said "whose to say thats not normal"...well first off i like to talk. i talk a lot...but i was messing up so much i try not to talk anymore...my parents notice all my speech problems...they went away for about a month and reappeared this week. but my neuro will not see me anymore because he's passing me over to the ms specialist in town to rule out ms.
My mom is getting so fed up with all this...She talked about it with her friend AnnMarie and AnnMaries mother and her mother suggested my mom take me to the mayo clinic because thats what she had to do to get her twin daughters diagnosed with lupus(AnnMaries sisters)
It is very frustrating...today my mom said if i do have ms(which she thinks i do) that I've had it for a while...because I started to get clumsy when i was a teenager and thats when I started to fall all the time...I just recently feel in March and broke my foot in 4 places.
So hopefully we will both get some answers soon, and if AnnMaries mother says mayo is good it is. It took years to diagnose her twins but after they went to mayo it was no time before it all came in place.
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twisty - thanks for responding

Postby janereed » Sun Jan 10, 2010 9:52 am

I completely feel your frustration!! What I cannot stand is to see these doctors who are supposed to be there to help you and they act like nothing is wrong. I have had one look at me and tell me I do not even have the symptoms of ms...another tell me they are old age spots...but I am only 38 ... and another tell me sometimes we just don't get answers...not acceptable! I am going to the Mayo Clinic in February and I know I will get answers there! Everyone I have talked to said they got answers there, so I cannot wait. I hope you find some answers as well! I know it can be very frustrating and scary, especially at your age!!
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Postby patientx » Sun Jan 10, 2010 5:12 pm

Janereed:

One piece of advice - when you go to Mayo or anywhere else for another opinion I would not tell them that you suspect or are trying to find a diagnosis of MS. In fact, do not suggest anything. This is one way to get doctors to tune out. Just give them your symptom history and test results, and let them try to figure out what is wrong. Besides, you don't want to assume MS, since what you describe could be caused by many things.
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Thank you

Postby janereed » Sun Jan 10, 2010 5:20 pm

Thanks for the advice. I am going to do that. When I wen to the past two neuros I told them my doc suspected MS and they totally tuned me out. This time I will just keep my mouth shut!
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