My LLMD wants me to see a neurologist because I have a lot of nuro issues - Tremor, stiffness, neck/back pain
Have an appointment next Tuesday
Posted by lou (Member # 81) on :
Hope this is someone with an open mind, recommended by your lyme doc. Otherwise, you could get misled about causation, since most neuros don't know anything about lyme.
I have been to several. A waste of time, apart from the one that did the testing that my lyme doc wanted: nerve conduction and other nerve stuff that documented my condition.
The worst one was hostile about chronic lyme and wanted info on the doc that was treating me, and it sounded like he wanted to cause trouble.
Posted by Dexter (Member # 30590) on :
I have been to 3. the first 2 couldn't come up with a diagnosis so they threw all sorts of meds my way including sleeping pills.
the 3rd one was a "specialist" at a university hospital who came up with silent migraines and threw more meds my way.
all 3 did not believe in Lyme without a positive test.
as Lou said, hopefully this is one with an open mind. good luck.
Posted by gwb (Member # 7273) on :
I went to one. He knew nothing about lyme. Did a bunch of tests on me and found nothing. Rx'd me some Lyrica--no thanks.
Hope your doctor can help you, if not maybe you can find a LL neurologist.
Gary
Posted by desertwind (Member # 25256) on :
I had to go to one because I also have a Chiari Malformation.
My CM was found on an MRI that my LLMD ordered.
Posted by jadams (Member # 28016) on :
Same story...Saw 3 neurologist due to dizziness/vertigo for the first year of lyme disease. Never mentioned Lyme, didn't know how to properly test for it ect... IMO the only thing they can do is order tests/MRI's but nothing to really help Lyme. Best to stick with LLMD.
Posted by MichaelTampa (Member # 24868) on :
I went to one before I knew anything about lyme. I was having a lot of migraine headaches at the time, some triggered by exercise, some triggered by exposure to fluorescent lights, and some without known triggers.
He suggested some do get migraines from triggers like this, and suggested I do my best to avoid those where that made sense, and offered some drugs. I avoided the drugs, still looking for a real reason.
Oh yes, but he also did some test to rule out other problems.
Posted by joysie (Member # 11063) on :
I saw a neuro who was the first person who sent out tests for lyme and coinfections. Babesia was positive and he also told me about the chronic infection debate. He got me started on the path.
So I had to put in a good word for neuros, but I have never needed one to do anything neurological, so..
Posted by psr1 (Member # 22957) on :
I did. Waste of time. Did MRI, spinal tap, the works - tested me for West Nile - and then told me I had a virus that would go away on its own.
Posted by sickntired19 (Member # 21949) on :
I did. It was a waste of time, money and emotional energy!! He did TONS of expensive, invasive, tests, one of which resulted in a traumatizing experience and later an ER visit.
When I first met with him he really thought I had Lyme, from my symptoms, etc. However, when all my tests came back negative he called me crazy and wanted me to see a psych.
He also tested me for STD's without my permission. To say the least, I was mad!!
But on the other hand, I understand you want to rule anything else out, so it has to be your decision! You have to be comfortable.
Posted by apljack (Member # 14233) on :
Yep, been there, done that. Had me do sleep test, wanted me on cpap machine. Since it did nothing for my fatigue, I obviously wasn't using it right.
What a joke. And, it's in my file, unless I do another sleep test. My breathing did not stop, I had very "short" breathing, probably from the babesia.
Posted by jennie08 (Member # 17351) on :
I went to a neuro... not totally horrible. He did multiple MRIs to rule things out and then said my troubles were caused by either a virus or bacteria. So...not too far off. He tested for Lyme but it was negative thru LabCorp. He couldn't pinpoint anything, so he sent me to an inf. disease doc -- big mistake.
What I liked about seeing a neuro was that he could rule out and calm me down about some specific neurological diseases I was worrying about like MS.
By the time I finally saw my LLMD, he was thrilled that I had had the full neuro work-up and diagnosed me immediately, along with Igenex results.
Posted by fatherguido (Member # 25266) on :
I went to two neuros. The first drugged me with Topamax and steroids. I went for a second opinion and the next neuro prescribed an antidepressant.
They ran a lot of tests and did rule out stuff like cancer, MS, stroke, tumors, etc but never bothered to test for Lyme while prescribing steroids.
Edited to add: The first neuro persuaded me into doing a spinal tap to detect Lyme and found NOTHING. I tested positive for six bands two weeks later with Igenex.
Quacks.
[ 03-02-2011, 06:33 PM: Message edited by: fatherguido ]
Posted by Runner17 (Member # 30272) on :
I've been to three neurologists since my symptoms are mostly neurological. The first one diagnosed me with " atypical facial pain". I have a lot of tooth and facial pain from Lyme.
The second diagnosed me with arthritic changes in my neck causing an abnormal emg.
The third thought I had Lyme and started my treatment. He also said not to worry about the abnormal emg because he is not impressed by the emgs from the other neurologist and my strength and muscle tone is fine.
So there seems to be a lot of variability between all the neurologists I've seen. I'm thankful for the last neurologist that I saw since he started my treatment. However, he also said I would be fine after 30 days of doxy......
Posted by 365SunnyDays (Member # 29969) on :
I've been to two neurologists for a droopy eyelid, which led to a diagnosis of the autoimmune disease Myasthenia Gravis. One was not open-minded at all; the other was. Neither had any suggestions for really curing me -- only treatments.
Each were helpful in their own way, though I wanted to find out what is really going on. Auto-immune disease seems to me our medical establishment's way of labeling "I don't know."
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by 365SunnyDays:
Each were helpful in their own way, though I wanted to find out what is really going on. Auto-immune disease seems to me our medical establishment's way of labeling "I don't know."
- Absolutely
Posted by chiquita incognita (Member # 30381) on :
Chiropractic neurology...what an interesting specialty!
It was a chiro-neuro doc who diagnosed me with lyme and booted me out his door to my LLMD.
They have a whole other set of evaluation and diagnostic methods which catch many things, in my experience, that otherwise fall through the cracks in mainstream neurology.
Chiro-neuros are chiropractors who go back to medical school and train as neurologists, are licensed as docs. So they can order tests et al and accept insurance.
You can find a chiro-neuro doc here: www.acnb.org Posted by chiquita incognita (Member # 30381) on :
PS Yes and I did go to a mainstream neurologist and it really was a waste of time....many MRI dollars later. Thank God we had insurance to cover most of it. And the MRI showed nothing. The doctor clicked up his heels and said "you are cured!" Yeah right.
Thank god for my chiro-neuro doc. With lyme treatment I also no longer need to see him, though we are still working on the different layers of the onion.
Posted by Roger1700 (Member # 29719) on :
Been to 3... two said fibro, one said dunno.... waste of time and money...
Posted by sickntired19 (Member # 21949) on :
One more thought.
If you are going to try to get a positive Lyme test, then skip!
However, if you are worried that something else is going on, they can be helpful in ruling stuff out.
It isn't really a bad idea to get an MRI just to make sure everything that there isn't anything else going on in your head, etc.
However, if you do see a Neurologist, don't let them string you along, doing every single test possible.
A few basic tests can put your mind at ease that nothing other than Lyme is at play in the situation.
Just don't let them do anything that is harmful to a Lymie, i.e. steriods, etc. And don't let them string you along for ever.
{{prayers}}
Posted by bcb1200 (Member # 25745) on :
I did. Before my dx I went to a regular neuro. He thought it was stress but gave me a brain MRI anyway. It was abnormal with two small spots and a suggestion of atrophy in the parietal lobes.
So..I then I had an EEG and an Brain SPECT. EEG was normal..SPECT was not. He wanted to do a spinal tap. But by then I had found my LLMD and had a positive IGENEX test...so I knew what it was...lyme!
I have since been to a Lyme Literate Neuro who is following my progress. After 10 months of treatment, my MRI is now NORMAL. Spect is still abnormal but improved.
Posted by erikjh1972 (Member # 20964) on :
i did. he was the one who actually thought it was the lyme that came back, unfortunatly he really didnt know anything else about it. but he pionted my in the right direction---i just had to get there myself.
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