So TIRED of trying to GET DIANOSIS? HOW do I finally find it

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

So TIRED of trying to GET DIANOSIS? HOW do I finally find it

Postby presleyjames66 » Tue Mar 13, 2012 9:50 pm

I have been dealing with mounting symptoms of MS for what is now my THIRD year. I have been to some of the most renound clinics in the US, with various Doctors playing guesswork with my life. One says, MAYBE, or I THINK, or it ...COULD BE...MS...the others, simply do not know. I feel like my body is turning on me, as the symptoms now, due to an increasing amount of stress, have simply exploded. I have been dealing with the "HEAVY" feeling or tightness in my right side arm and leg for nearly 2 years...however now, there is an EXTREME shift in my personality, and muscle cramps that are turning my feet out. I perhaps, could deal lightly with every symptom, but not this wearing on my personality. I get angry, when there is no reason. I cry for nothing. Then, I am back to what I term...semi normal. It is exhausting, as I simply want to go away, and let my family have peace. I am slated for another MRI in less than 2 weeks, as my new neurologist, states....in the exam, to HIS trained eye, I do not have MS, yet my right side fails each time. My memory, is that of my mom who is 85. My neuro will not say however it is NOT ms, as he does know, that a change in leisons on my brain, could give indicators. 2 years ago, I showed 5. HOW do you find out, what do you do....when it seems EVERY road, is the wrong one, and there is just no answer in sight? I have an acquaintance who is now in a wheelchair, as they guessed her right into the major level of MS. WHAT DO I DO? I have a nursing background, therefore, I know what to ask the Doctors, but I do not think they know, what to answer to me.


FRUSTRATED beyond belief~
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Re: So TIRED of trying to GET DIANOSIS? HOW do I finally fin

Postby want2bike » Wed Mar 14, 2012 5:20 am

Doesn't matter the name of the disease. Diet is the key to healing. Take control of your disease and design a diet which is good for your health. If you could find a holistic doctor he could help with this.

http://www.youtube.com/watch?v=ZAhu6oa_ ... ure=relmfu
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Re: So TIRED of trying to GET DIANOSIS? HOW do I finally fin

Postby milesap » Wed Mar 14, 2012 9:10 am

I'm surprised you did not have a spinal tap and MRI which would confirm lesions on the brain or spinal cord. Then MS would be confirmed. You may have another condition called ccsvi that results in similar symptoms.
see video http://www.youtube.com/watch?v=Jikh7O8nr_E
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Re: So TIRED of trying to GET DIANOSIS? HOW do I finally fin

Postby MarkLavelle » Wed Mar 14, 2012 2:49 pm

presleyjames66 wrote:I have been dealing with mounting symptoms of MS for what is now my THIRD year. I have been to some of the most renound clinics in the US, with various Doctors playing guesswork with my life. One says, MAYBE, or I THINK, or it ...COULD BE...MS...the others, simply do not know. [...]

2 years ago, I showed 5 [lesions]. HOW do you find out, what do you do....when it seems EVERY road, is the wrong one, and there is just no answer in sight? I have an acquaintance who is now in a wheelchair, as they guessed her right into the major level of MS. WHAT DO I DO? I have a nursing background, therefore, I know what to ask the Doctors, but I do not think they know, what to answer to me.
The criteria for an MS dx are not very complicated, and they are very specific (see http://en.wikipedia.org/wiki/McDonald_criteria). If your sx and MRIs haven't met the criteria the docs shouldn't call it MS.

Many diagnoses (including mine) are delayed by a lack of evidence proving the 'multiple' part of MS. In your case (one apparent relapse, 5 lesions, no evidence of dissemination in time or space), the 2010 revision makes it pretty clear that if your next MRI shows new lesions the docs will finally call it MS (assuming other causes for your sx have already been eliminated).

Best of luck,
Mark

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: So TIRED of trying to GET DIANOSIS? HOW do I finally fin

Postby presleyjames66 » Tue Mar 20, 2012 12:40 am

milesap wrote:I'm surprised you did not have a spinal tap and MRI which would confirm lesions on the brain or spinal cord. Then MS would be confirmed. You may have another condition called ccsvi that results in similar symptoms.
see video http://www.youtube.com/watch?v=Jikh7O8nr_E


Have had MRI 2 years ago, revealing 5 lesions...they yet debated. The spinal tap done once as well 2 years ago, was a 70 min procedure during which the PHY became frustrated at the lack of my spinal fluid, and difficulty achieving the tap.

Thanks
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Re: So TIRED of trying to GET DIANOSIS? HOW do I finally fin

Postby presleyjames66 » Tue Mar 20, 2012 12:44 am

Thank you each, for your responses, it is evident, each of us are on an extended journey. The success of this journey, in my humble opinion, is with the help of others in the like state, and upstanding care by either board certified phy's or holistic healers. I await all input on this matter in aiding my quest, as well I stand ready to help you each, should the days become more than difficult :).

Thank you again,
Presley J
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Re: So TIRED of trying to GET DIANOSIS? HOW do I finally fin

Postby tiltawhirl » Sun Apr 01, 2012 9:06 am

presleyjames66 wrote:Thank you each, for your responses, it is evident, each of us are on an extended journey. The success of this journey, in my humble opinion, is with the help of others in the like state, and upstanding care by either board certified phy's or holistic healers. I await all input on this matter in aiding my quest, as well I stand ready to help you each, should the days become more than difficult :).

Thank you again,
Presley J


Hi Presly. Took me a long time to get a Dx for M.S. so you are not alone with your frustrations. I played the drums for 25 years and yet the Neuros wouldn't listen to my anecdotal evidence and until, like Mark outlined, it was shown over multiple MRI's with lesions in different spots and they can follow the McDonald criteria and confirm a diagnosis.

If it's any consolation, one of the things I learned by being as patient as possible with the process was that one should never underestimate the value of getting a proper diagnosis rather than just throwing water at a grease fire when we know that doesn't work, for example. Once the McDonald criteria are met clinically however, if your Neuro is still humming and hawing, it's time for a 2nd opinion.

Hope this helps!

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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