I saw a new Neurologist today, should I talk about Lyme?

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Pomfrey
Regular Member


Date Joined Nov 2007
Total Posts : 23
   Posted 7/2/2009 11:04 AM (GMT -6)   
I realize now that I made a mistake not checking to see if this guy was LL or not, but I went to Neuro today for this numbness thing that happens periodically.  Every time I get emotionally upset I get this wave of numbness that radiates around the left side of my head and face down to my torso.  Aside from that the left side of my face feels like there are places on it that are numb. 
 
Anyway, I went to the neruo and told him about the 20 year diagnosis of Lupus and Fibro, I didn't mention Lyme.  He did some office tests and the most remarkable one was when he started tapping me with a pin, on the entire left side of my body it felt like he was touching me with a finger instead of a pin.  He wants an MRI with contrast of my head and neck, he says that the only thing that could be causing this is something going awry with the right side of my brain.  Apparently as we age, we get something in the brain that he called some kind of spots, I don't remember exactly what he said those were called.  It is normal to have 10-20 at my age.  He wants to see how many I have and see if there is anything else going on there  He said that when the test comes back it will list a bunch of things that cold be the cause of what is making this happen and one of the things he mentioned was Lyme. 
 
I was too afraid to say anything about the Lyme.  He was already kind of pushy when I told him I didn't see a Rheumy for the Lupus, and that my primary doc sees me for that. 
 
Give me feedback, please, I want to hear what someone else thinks about it and if you would mention the Lyme or not.
 
Thanks!

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 7/2/2009 11:15 AM (GMT -6)   
ha...tricky question. When you do bring it up he will be most anoyed with you.
So, wait and see you test when they come back. It sounds like belss palsy. Which I had too. My whole face on the right side was dumb. And that is caused by swelling in a tiny vien in your ear.

He will most likely get pissed when you bring up lyme. And most likely your mri will come up with noithing at all.
They look at teh big picture. It is not going to see bacteria sitting all over the place. Which is what is giving you all of these problems.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 7/2/2009 11:56 AM (GMT -6)   
Pomfrey,

due to a lesion in my left eye my eye Dr. sent me for a MRI. they did both eye and brain. my brain showed 10 to 15 lesions in the frontal lube. there was 6 resons listed as possable causes. 3 cancer related, lyme, migrains, and viral infecton. so i had a lyme test done. came back positive for IgM.

i was sent to a neuro by my ID to rule out MS first b4 he would treat me for lyme. well i did that and still he tells me he doesnt belive i have lyme.

my neuro knows i have lyme as i showed him my test. well i just got my test report today on a EMG i had done. in it he listed i have possable lyme disease.

so its my thinking your dang if you do and danged if you done. you have to follow your gut and do what you think you need to do.

i wish you all the best
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 7/2/2009 12:21 PM (GMT -6)   
Pomfrey, It's such a shame that we often know more about LD than most doctors and have to be afraid to share what we do know.

RD, I am so mad and frustrated for you.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/2/2009 12:27 PM (GMT -6)   
frustrating isnt the word for it, i am way pass that now. totally teed off is what i feel.
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


Pomfrey
Regular Member


Date Joined Nov 2007
Total Posts : 23
   Posted 7/2/2009 4:55 PM (GMT -6)   
Thank you for replying, I appreciate the feedback! I still don't know if I am going to mention it or not. It may not be worth it...
Pomfrey
 
DX - SLE, Fibromyalgia, Sjorgren's Syndrome, Raynaud's 1994.  Also Allopecia, Rosacea, Depression, GERD, Asthma, Osteopenia, pre-diabetic, Hypothyroid, Leaky gut, and low testosterone since then.  Positive bands for Lyme 2009.


Spacie Gracie
Regular Member


Date Joined Nov 2007
Total Posts : 67
   Posted 7/2/2009 10:07 PM (GMT -6)   
Howdy Pomfrey :)
How are ya today? Sorry dumb question but i can still hope you're doing as good as normal.
(That question was made up by the devil himself i could bet!)
I hope things are getting sorted out for you! I had your symptoms too all on one side and weakness too. actually still have the weakness on one side according to my hospice dr. a couple weeks ago.

YIKES. Ooo ooo, i know your question though, it's like the flippin unspeakable subject cause God forbid anybody over hear ya in the doc office.
Maybe it was just my big mouth?
Yeah that was definitely part of it...has gotten me into some not so friendly uhh i'll just say 'creative discussions' and they're 'hott'-so apparently very in fashion these days :D hehe.

SO what i've kinda learned to do after feeling out the doc a little bit, (for whatever the heck this is worth to you comin' from me lol), but i've rolled over and played dumb (about dead too a couple times but that wasn't on purpose on MY part *cough idiotic doc cough lets pray he doesn't reproduce cough cough* haa) Spacie No Brain Teenager, cause we teens ain't got no brains right? lol well there's no denying it wasn't a hard role to play...either that or i'm dumber than i thought LOL, wouldn't surprise me lol.

Anywayy I just kinda figure out a way to make it look like the doc came up with the solution.... I just try to frame w/e i'm saying about Lyme Disease in a question. (hahah sometimes i've said 'Borrelia Burgdorferi' and some docs actually didn't know what that was LOL. NOW who hasn't done their homework...ah!...very creepy.)

I don't know exactly what you're thinking you want to tell him about Lyme though... that you've been diagnosed?? Ya kinda lost me there. But the brainless dummy works for me, maybe somethin' like that would work for you too...? Maybe print some reliable info out to counter what he could say that's not correct about Lyme? Or maybe only consider telling him if there would be med interaction possibilities???? Beats me i'm just tryin' to help, tryin' but failin' i get the feeling, sorry.

Dagum, what neuro did you go to? I go to a local neuro, right here that is..well he's Lyme friendly and purdy open minded. i really love the dude, he has mucho stuck up for me and is really a brilliant man who knows his sheeet. My mom recommended him to a VERY dear lymie friend from SC and he found chiari malformation! that multiple other neuro's were clueless!!! likely clueless cause they saw the L word on the dagum records. Did dr. NS give you the name of the neuro you saw? If he did, it's probably mine. dr. NS knows his stuff too!! (lucky for us!!)

Okie doke smoke my brain is more bbq now, i hope i was a little help at least..
Hope you're feeling better soon.
~ Spacie Grrracie
"What lies behind us and what lies before us are tiny matter compared to what lies within us" - Emerson

"Hard work beats talent when talent doesn't work hard"- adopted by TEAL (the acrobat in me)


Pomfrey
Regular Member


Date Joined Nov 2007
Total Posts : 23
   Posted 7/3/2009 9:37 PM (GMT -6)   
Thanks Gracie, you are helpful and I know that you are a very smart cookie! I did not ask Dr NS about this, I kind of rushed into it. My regular doc at the office that Dr NS used to work at referred me. I will be having the scan in the next 2 weeks so I guess I will see what it shows. I thought about you when I scheduled it, they told me to bring a blank CD-R with me so that they could download the scan onto it for me to take to the doctor to review - is that crazy or what? I just remember that last time we were in the hospital with you and all the smoke and mirrors that went on with tests.

I feel like playing dumb won't be too hard, I got the impression that this guy wouldn't have a hard time believing that about other people anyway!

We'll see what happens I guess...

Feel better - I was glad to hear you got to go outside for a while! Yay, lots of fun!
Pomfrey
 
DX - SLE, Fibromyalgia, Sjorgren's Syndrome, Raynaud's 1994.  Also Allopecia, Rosacea, Depression, GERD, Asthma, Osteopenia, pre-diabetic, Hypothyroid, Leaky gut, and low testosterone since then.  Positive bands for Lyme 2009.


saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 670
   Posted 7/4/2009 8:49 AM (GMT -6)   
I just saw a new neurologist because of left side numbness issues that often coincide with pain in the right side of my neck.
I gave her a copy of my positive Lyme results and my SPECT scan of the brain that showed Lyme/ Fibromyalgia/ chronic fatigue indications.
 
She admitted she didn't know much about Lyme. 
 
I told her about the 5or 6 other neurologists and rheumatologists I had seen . I also told her the only help I got was from LLMDs.
 
She increased my neurontin dosage and said she would talk to an infectious disease doctor.
 
At my next visit with her in Sept. I am taking copies of the many pages, actually folders, of info by LLMDs about chronic Lyme.
 
saxmar

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/4/2009 10:34 AM (GMT -6)   
saxmar, i think thats awesome thats she is so willing to learn from someone who knows what there doing abd thats a start for all of us i pray.

i hope your on the road to recovery
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 7/5/2009 1:55 PM (GMT -6)   
don't tell him. he already suspects it. just see where it leads.
Bit June 08.

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