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alonecuzms posted:
I've been with ms now going on 4yrs and neurologist says doctor is wrong and now this new one I'm seeing knows my doctor that diagnosed me with ms and says that he wouldn't say I have it without real evidence and being symptomatic for that long and he couldn't do nothing yet my old neurologist put me on a med that caused strokes and death. I'm scared to trust another neurologist but I hear she works with MS patients all the time and is licensed in the treatment of MS.

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Would u trust another one even though one wasn't it and this other knows her stuff and I could get probably my answers and the treatment I need?
  • yes I should get the second opinion.
  • no give up and stay a secluse.
  • yes and pray and hope for the best
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hackwriter responded:
Dear alone,

I'm so sorry you've had to go through this. Not all neurologists are good at diagnosing and treating MS, and that's why it's important to try to find an MS specialist. If you're struggling to find one, you can contact your local chapter of the National Multiple Sclerosis society for a list of specialists in your area.

Please don't give up, there is help out there for you. Many of us struggle with what you are going through right now, you're not alone. Get a second opinion. We have to advocate for ourselves to get the care we need and deserve.

Please do give us an update on your progress.

Kim
 
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swuki responded:

You are not alone! Think positive; there are many, many people more than willing to offer support, help & advice. I have had MS for 30 years, and have remained in the relapsing / remitting stage and the only permanent damage I have is the central nerve in right eye. slight problems with depth perception, so I will never be able to play tennis! However, that actually is a positive, because tennis is a sport played outside"026 in the heat! Ugh!

I am not a doctor & don't claim to be, nor do I claim to be a know-it-all; there are way too many issues with MS that is still unknown, how can anyone claim to be an expert. I only speak from my personal experience; yes MS is easier to diagnose the longer the doctor is treating you, watching your progress with regular testing for comparison.

I've been told that I am one of the lucky ones because I was diagnosed quickly & that was before any 'proof-positive' tests for MS; all the doctors could say is ""026there is no proof positive test for Multiple Sclerosis, but I believe that is what you have." (That is almost word-for-word quote what my first neurologist said to me.)

Personally, I am a strong believer in faith and 'how you deal' with the MS; me? I look at the positive; it gets me out of helping to mow the lawn or shovel snow, I am unable to go up & down the steps to do several loads of laundry! You must keep a sense of humor once you find a doctor you are comfortable with and trust, then relax and find the humor"026

I do not know where you live, so I cannot offer any suggestions or referrals; however, and you may think this is crazy, but if you are scared, confused, unsure and getting more & more frustrated & depressed, why don't you join Angie's List. It is $10 for a year, and I swear you can look up doctors, read their education, AND reviews from their patients. Once you are a member, you can also call & speak to someone, explain your situation / concern & they will give you a starting point. (That is how I got my eye doctor.)

When I moved here & started looking for a Neurologist, it was hard. I called the hospital, asked for recommendations, and informed they could give me a list of doctors, but could not give specific referrals. I feel your frustration, and I wish I could do more to help, but I am going to follow this conversation and will try to help if I can. If you live anywhere near the Cleveland Clinic, I could give you a doctor's name. Have you used the Internet to research neurologists or the one you are currently seeing? If you haven't, you should. I was astounded when I looked up my neurologist, (Dr. Gary Rae-Grant). I discovered he had authored a few books, speaks across the country & attends various MS medical conventions. I would 'Google' your neurologist first; you will be amazed at the amount of information; pro's & con's.

Also, please call your local MS chapter. You will receive so much help, answers & advice than you even knew was available. I hope I didn't ramble too much & I hope I was able to give you even a little bit of advice or calm a few concerns.

Sincerely,

swuki


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