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MRI Shows that Lesions in my Brain Are Still There...Sigh

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Posted 4/4/2014 6:14 PM (GMT 0)
For all those who don't know I have two lovely neurologists. One knows Lyme backwards and frontwards and the other know MS very well but not Lyme.

The one that doesn't know Lyme too well read my report, reviewed my brain scan. The good news is that there are no new lesions. The bad news is that the lesions that are there have been there and aren't clearing up.

His diagnosis...I have a mild case of MS.

Do I believe him...no. Then why am I shook up. Just to hear those words come out his mouth let me know why I am seeing the other neurologist and that my time with him is over.

But he is talking to me about how I can lead a normal life, not be disabled and oh get this...that he doesn't think I have Lyme but that I have MS.

Then why are my Lyme tests positive? Why did I have over 30 symptoms between Lyme, Bartonella and Babesia and now I have ten left...

I was crying...but I spoke to a friend who said, "You don't have MS." I thought about what my spirit was telling me, "You don't have MS." Then I started thinking about folks online here like Violets who told a friend don't get treated for MS and she did and ended up worse because she has Lyme.

Anyway I can use some virtual hugs and love...I feel like the man gave me a death sentence....I don't want any more misdiagnosis of any kind. I'm going to cancel my appt with him next Friday and stick with one neuro doc who I love and knows the clear difference of Lyme and MS.

Much healing to you all.

Posted 4/4/2014 6:54 PM (GMT 0)
I think you made a good decision. There's no use going to someone who doesn't know all that's going on with your health and being insensitive to boot! I'm sorry to hear that there was no change in your lesions. Hopefully in time the will lessen. It is good you didn't have any new ones at least.

((((((((((HUGS))))))))))
Posted 4/4/2014 6:58 PM (GMT 0)
Hi Wryter

If it makes you feel any better I read about people who report they had brain lesions from MRI scans from an MS diagnosis, got the appropriate treatment, the symptoms went away, and their MRI brain lesion cleared up!

I think antibiotics were necessary to be prescribed to do this. But it does show something can help.
Posted 4/4/2014 7:28 PM (GMT 0)
Thanks Garden Peace...I had to reach out to all of you because y'all know first hand how it is to be in this world.

LymePickle thanks...I have 10 remaining symptoms and just started treating for Babesia a month ago. This week was a better week as I increased the herbs. If these lesions have been in my brain for years I sure could not tell. I ran marathons, African danced, had my son, etc.

I'm going to pray on my next steps...the funny thing is at first they said there were "spots" in my cerrebelum...now he said there is one spot (wouldn't that mean some went away). Sigh...

I just want to be healthy from head to toe. I meet with my Lyme Literate Neuro Doc on April 25th and I am eager to hear what he says.

Also I had a bad spell...and I mean bad with abx. I had the severe side effects that almost landed me in the hospital hence why I have treated naturally. And I have withdrawal symptoms from Lorazepam.

Praying this storm passes over soon.

Stay tuned...
Posted 4/4/2014 8:43 PM (GMT 0)
Hi LearnLyme, my last MRI was Oct 2013 and then March 2013. All are the same...I'm with you, I had 3 positive bands with Lyme and my Western Blot was very positive.

My neuro Lyme doc knows that Lyme mimicks MS and then when my spinal tap was done and one of the bands that determines if you have MS was positive he also said that Lyme can turn that into positive as well.

He is going based off my symptoms the other one is going based on the lesions and that they have not healed yet.

I'm going with my heart, I know I don't have MS...I know I don't which is why I decided to cancel my appt with the neuro doc that doesn't know Lyme and stick to only one that knows both worlds.

I want to one day have an MRI and see that the lesions are clearing up. But like I have heard...millions of people are leading healthy and full lives not even knowing they have lesions.

Thanks for the advice and the encouragement. Very needed.
Posted 4/4/2014 9:15 PM (GMT 0)
Hi Wryter, I did not have the scan but did have a doc think I possibly had MS. I completely ignored him kpet up with my lyme tx and have improved each day. I think chronic Lyme can lead to MS like symptoms. You hear of people all the time getting wrong disagnosis bc lyme mimics so many other diseases. Id keep treating the lyme based on your improvements. You are probably much more of an expert on the disease than the neuro dr.
Posted 4/4/2014 9:18 PM (GMT 0)
OBTW I ditched this doc and never went back to him again. As soon as I heard the words post lyme syndrome, I knew I was in the wrong place. Id use a llmd and and lyme literate neuro.
Posted 4/5/2014 11:48 AM (GMT 0)
Prayers & hugs sent!!!!
Posted 4/5/2014 12:38 PM (GMT 0)
Thanks everyone!!! I chimed in with my doctor who has treated me for Lyme and she was infuriated by him. So he's done his work and its time to let him go. I'm going to continue treating for Lyme and Babesia and watch these remaining symptoms go away!!!! It's coming, I'm confident!!!

Love each of you!!!! Healing blessings to all!
Posted 4/7/2014 2:04 PM (GMT 0)
Hi Violets! I am so happy you chimed in. I'm so sorry your friend is still in a wheelchair. Deep in my heart and spirit I know I don't have MS. I spoke with my primary doctor who talked me off the ledge. She said it is up to me if I want to see that neurologist again but she also reassured me that I don't have MS.

Also you are right...I will get better and believe in that more and more everyday. Even when I was very ill I kept telling myself to push to get totally well.

I can't wait to run marathons again! I want to do my first triathalon when I'm 40 (which is next year).

Stay tuned and yes my treatment is really out the box...people keep telling me to get on abx...well in my case they make me worse to the point where I can't function (well that was last year).

I'm so close to the end of this I can feel it and this is the time to beware of obstacles or distractions to lead me off my path of true healing.

Thank you for chiming on. Much love to you Violets!
Posted 4/8/2014 1:02 AM (GMT 0)
I didn't even know that brain lesions could go away. My first MRI showed no lesions, the second showed four, which was weird, and they've never changed since. I wouldn't worry about the lesions, unless you get more. Count your blessings.

Margaret
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