going to neuro tomorrow..advice?

Hi everyone

I have a neuro appointment tomorrow. I'm not sure what he is going to do. I saw him 3 months ago when all my tests (mri, VEP, EEG, nerve tests) came back normal with no abnormalities in my neuro exam. He told me to come back for a follow-up so I don't know what to expect.

I want to ask him to test me for lyme but I'm kind of worried to bring it up. I don't want him to think I'm a hypocondriac...especially since I don't recall a tic bite. My symptoms that I came in with are still with me (tingling in legs, back, arms in random areas, twitching all over, and my strange visual issues). They haven't gone away since October. I also now get heart palpatations, air hunger, shin pain, neck cracking, and congestion/sore throat. Working out is also much harder due to the shin/calf pain and heart flutters. I also sometimes get vertigo when I move my head in bed mostly and is usually accomponied with nausea.

Do you guys think I should still mention lyme disease? Should I mention all of my "new" symptoms since I last saw him? Again, I'm worried about sounding like a hypocondriac. I really like and trust my neuro (he is great and took me seriuosly when I last saw him). He did all the right tests in a very timely manner and sat me down for all the normal test results. He never once mentioned lyme. Would now be appropriate?

Thanks for the advice.

p.s I still feel pretty good and can still carry out my daily activities with college and everything. I just hate having these strange sensory/heart/muscle issues. I hope he doesn't say "well you aren't sick enough". Someone on here told me you don't have to be really sick to have lyme. Anyways thanks again in advance!

[jason80]

Neuro doctors can't comment too much on Lyme necessarily. I had a neuro run blood work, so there is no reason he can't do an ELISA though.  I would mention your symptoms I guess, but on the other hand, I must say that my own experience was not so compassionate with neuros. I felt like unless I had brain cancer, my problems didn't warrant a lengthy discussion in their mind.

[wonko]

My experience with neuros echos what jason80 says:  Not that sympathetic, and not that Lyme literate.  I think "Hope75" has a neuro who is working with her on her Lyme case, but that stands out as an exception.

You can discuss with him wanting Lyme blood tests.  The normal testing route (as you likely know by now) is to only do the Western blot in cases of a positive ELISA, so that is likely all he will order.  If you don't feel comfortable with this doctor, ask the front desk to have the results mailed and/or that they get sent back to your GP, that way you don't need to follow up with the neuro.

Not to sound like a broken record, but the shin pain and so much more of what you say sound familiar and sounds to be of tick-borne origin.  While it is not interfering too much now, if you already have symptoms spanning several systems, then I don't think this is something on which to turn your back.  

[patsy10]

I'm with jason and wonko.  My experiences were the same.  I would tell him all your symptoms and everying that is going on.  I would also ask for the test.   My experience is that they examine you, tell you things are normal and have you schedule a follow up in a few months.

[cindy903]

Be honest about all symptoms. Don't bring up lyme...Maybe the doc will?

That is the best you can hope for. Just tell him all you wrote but omit anything about Lyme Disease. Doctors have got to be aware of it, especially neuros...

They have to be aware of it from studying diseases...including LYME

[SOONERMOM]

When you suggest the test, you could always follow it with a comment like "it's something to rule out"...that is how I got my neuro to order it.  As he was leaving the room, he said something about there being a lot of false positives..lol  Have  you had any blood work run?  There are some he should be looking at anyway.  I was tested for thyroid problems (hashimoto's), sjogrens disease, lupus, and APS or hughes syndrome..to name a few.

I think it is good advice to tell him all your symptoms but leave out the "lyme disease" part.  

good luck!!

[Surruh]

So I just got back from my neuro appointment. He conducted a full neuro exam and EVERYTHING was perfect..(reflexes fine but left leg a little slow, balance fine when closing my eyes, can walk toe-to-heel fine, eye tracking and pupil reaction fine, finger to nost test fine, strength good). He told me to see him again in 3-4 months but he at this point he thinks it will either go away or my stress/anxiety is making it worse than it really is.

I breifly mentioned some of my other symptoms and I asked him if he tested me for lyme with all the other bloodwork he did. He said since I don't have any lesions on my brain and that it is completely normal except for the sinus disease that it doesn't warrant a lyme test. He only does it when ms-like lesions show up. He told me he will keep on seeing me every 3-4 months for awhile but doesn't think it's anything serious.

He asked me how I felt overall and I said pretty good..witch is true. I just wish these pesky symptoms would go away. I'm going to try not to think about my symptoms to see what happens. I have to admit, I do feel better that my neuro exams continue to be normal.

So my next step is seeing my GP and asking him to do a lyme test for me. I don't think he will mind doing this for me.

Anyways thanks for all the great advice. I greatly appreciate it!!!

-Sarah

[skarey]

I'm happy to hear that your neuro exam was normal!   However, I find it strange that your neuro will not test for lyme until brain lesions show up!  When lyme gets to that stage it is more advanced and harder to treat.  Why would he not try to catch it early when it is easier to treat and before it does permanent damage!?  This seems very backward to me!  

Hopefully your GP will run the lyme test for you.