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Neurology follow-up?

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Posted 12/19/2012 2:42 AM (GMT 0)
So, I'm trying to decide what to do. I have a follow-up scheduled w/ my neurologist for tomorrow.I have not seen her since the Lyme diagnosis and I've only seen her one time. When I met w/ her, she seemed kind and compassionate and she didn't treat me like I was nuts, so that's good, but I am nervous that she'll be dismissive or rude now that I have the Lyme diagnosis. I don't think I can handle another bad experience w/ a Dr.!

Basically, I'm trying to decide whether or not to go to the follow-up appt. or cancel? I guess I just wanted to get other opinions on it. I called to reschedule, thinking that I would just schedule it for further out, but she's scheduling all the way into Oct. 2013 for follow-ups.

Do those of you w/ a lot of neuro. symptoms see a neurologist in addition to your LLMD? Or is it pretty much pointless to have a neurologist? I have neuro. symptoms including vision, tingling, twitching, neuropathy type pain, but I don't have any "serious" neurological problems (such as seizure, paralysis, etc.).
Posted 12/19/2012 3:19 AM (GMT 0)
Hi Mystery:
I think going to a neurologist for Lyme is a waste of time. Stick with your LLMD. Just wondering...do you have tingling on the top of your head? Also what about a feeling of being off balance.
Posted 12/19/2012 3:25 AM (GMT 0)
Thanks for your response! That was kind-of my thought also. I'm torn. It's my mom that keeps convincing me that I should keep a neuro. on hand, but I'm tired of spending time and $ on Drs. other than my LLMD.

Yes, I have tingling on the top of my head. It gets bad and flares when everything else does. I used to have a lightheadedness, off-balance feeling. I still occasionally get it, but that seems to have decreased quite a bit since starting abx. 4 months ago.
Posted 12/19/2012 3:46 PM (GMT 0)
I would agree that you shouldn't see a Neuro doc unless they are well educated about Lyme - otherwise they will unknowingly direct you away from doing what you need to do in order to get past these infections- simply because they don't understand.

Stick with your LLMD, you won't be working against your own treatment that way. If s/he isn't helping you, then find another LLMD.
Posted 12/19/2012 6:36 PM (GMT 0)
I did not see a neurologist until I presented with horrible neuropathy pain. While he is nice and gave me a diagnosis of small fiber neuropathy, it is most like from the lyme and plain and simply, he does not know lyme.

I don't blame you for not wanting to see another doctor and would have to second the opins of those above and stick with your LLMD. With proper treatment, the neuro symptoms do and subside for me.

What I have learned from my neuro appointments is that they only gave a diagnosis and do not necessarily treat the underlying cause.
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