Neurologist - Worth My Time?

I have such limited energy, and so many appointments, so I try to weigh which ones are really worth my time. I'm sure many of you can relate. Tomorrow I have an appointment with a neurologist who is one of the rare autonomic disorders specialists, although she is in no way integrative or LL.

I have or have had many neurological issues since being sick with Lyme, mostly mild - peripheral neuropathy, paresthesias, roving nerve pains, headaches, hyperacusis, visual disturbances, vibrations, POTS, gastroparesis, temperature dysregulation, dizziness, etc. I am highly reactive to most substances I ingest, and prone to side effects, so I am unwilling to treat these issues with drugs (which she probably will recommend) but willing to try treatments that are dietary, mechanical, herbal (so can be titrated), etc. (which she most likely will not know about). I also will not submit to most of the testing most dysautonomia specialists order (nerve biopsies, conduction studies, tilt table, etc.) because my conditions are textbook and commonly associated with the conditions I have, and honestly I don't see the value relative to stressing out my body. I already have a neurologist and a POTS specialist cardiologist, and an LLMD who works with both of them. I have an appointment with "the best" dysautonomia specialist in ten months. My peripheral neuropathy flared like crazy for three days in February but otherwise is very minor (painless tingling in hands). POTS flares occasionally but is much better with salt, compression stockings, and hydration. The other symptoms are not especially troubling or active at the moment, fortunately.

What say you? Should I go, just to have established contact in case something neurological comes up before I can see the "better" dysautonomia specialist? Or should I save my energy for the other three appointments (and, you know, life) I have this week? Am I making too many assumptions about the visit being useless?

The last neurologist I discussed these things with (a year ago) shrugged, said my exam and MRI were normal, and said derisively, "I don't know what half these supplements are, so I can't treat you, since everything you're experiencing is probably just side effects from all these supplements." I know I'm not an easy or straightforward patient, but I do my best to meet providers in the middle by bringing timelines, lists, and anything else that might streamline their onboarding process. But that probably also makes me seem nuts....

Thanks for weighing in.

Agree with Girlie.. save the money for real treatment. MRI's, Spect scans etc are very expensive unless you have met your yearly deductible. At best he may prescribe gabapentin or another nerve pain Rx, and deny chronic lyme and co's existence. He'll go by the CDC and IDSA book.

There are a few good LL neurologists out there. In January I got an appointment for Nov 18, 2019 with a good one in Boston. Not sure what my expectations will be, possibly IVIG to boost my immune system if I can afford it.

I don't know if this Neurologist will do the EMG and NCS - to check nerves.


Warning - one of them hurts - can't remember if it was the one with the needles...or the one with the pads.

the only neuro ive seen that isn a complete idiot is dr frid ... do u need ivig or some other dx like sfn for insurance ? than id pass on the trauma

Thanks for the support, everyone! I sort of expected to be cautioned more, but I suppose most of us have had "treatment fatigue" and fruitless specialist visits. It's hard to know how much of my desire not to go to an appointment is exhaustion and pessimism as opposed to legitimate doubt that it will be worthwhile. I cancelled my appointment.

https://paleoleap.com/butyrate-anti-inflammatory-fat/

Georgia's comment caused me to find this...said eat more fiber (veggies) and butter....agree with this Georgia or is there something else we should be doing to increase butyrate?

My neurologist did to a degree rule out MS, ALS and some other chronic ailments that show up with blood work. He was good for that. The mention of Lyme disease in my last appointment caused him to get in a tizzy and sever ties with me. Despite me only nodding and agreeing with him. He has now refused to give me any type of referral to a rheumatologist and wont return phone calls or emails. I also felt like I wasted $3000 on mri's and xrays of my lower back that were done 9 months prior because he wanted a up to date xray/mri. So beware I wish I had been more guarded in agreeing to another mri and xray.

sierraDon said...
neurologist was a waste of time, i went there with an abnormal MRI, three small white matter lesions in my brain. he said that although they were reported as abnormal, its common and nothing to be concerned about. its normal. even with my reported neurological symptoms, muscle twitching, etc. he wanted me to repeat the MRI again in a year, i never did.

when i mentioned lyme, he told me these are not symptoms of lyme. but normal aging.

this was the head of the neurology in my health network...never again

The one thing that really chaps me off is a physician saying something is "normal aging." Aging is a physiological process that is really too big for anyone to envelope, but there are components of it that can be defined and treated. They just don't know the physiology well enough to define or treat it.

It starts with oxidative stress and trying to reduce it. This mostly involves nitric oxide and a lot of other compounds, but finding what is causing the stress for the most part is completely doable. I have not met a neurologist yet that can see the big picture and I know some brilliant neurologists.

Re: "normal agin," that's so timely for me!

I've been dealing with miserable upper abdominal pain that seems musculoskeletal or neurological, but no one is sure, and - oddly - no one in my medical milieu especially cares to figure it out. No one will order imaging for me, even though it's been getting worse for months now, and I'm considering presenting to the ER dramatically so that I can have a bloody ultrasound done. Most recently when I visited my PCP about it for the second time, she told me that "as we age, we heal from muscle strain very slowly, and it can be frustrating, so just don't do anything." This is a functional medicine doctor. I am 36yo. And I didn't do anything that causes muscle strain. She then said, "This is probably just part of your whole inflammatory situation." Thanks, doc. Super helpful. Grrrr.

Doctors who dismiss us are dehumanizing. My heart rate is always 30 points higher before a medical appointment, feeling like I have to make my case strongly, succinctly, and dispassionately, like I'm preparing for court. It's ludicrous. Some practitioners are much more helpful and validating than others, of course, but it takes so much out of me to bother....

Thanks for the support, Girlie and Sandyfeet. At this point I avoid the ER (and really any medical facility if I can avoid it) because it's never been helpful ... and yet it can be nice to have someone do imaging and rule some things out.

“The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.


http://www.dysautonomiainternational.org/page.php?id=34