Thoughts on getting a consultation with a neurologist?

[Aidan]

I suspect that I might have an additional problem to Cfs, due to the fact that I recently had an onset of a whole host of additional symptoms, some of which don't seem to be straightforwadly explained by cfs. I had this same symptom experience a few years ago when severely deficient in vitamin d, but I recently had extensive blood tests and don't have any such issues. I'm wondering if anyone has experience with consulting a neurologist and if people think it could be fruitful? I'm asking because I presume that people generally consult neurologists when they are already aware of a neurological condition they have, rather than in my case, where my goal is to "fish" for any conditions that I have in addition to Cfs. Would a neurologist have methods for investigating any conditions I might have upon hearing about my symptoms? Also, I know that cfs is itself considered a neurological condition, I just want to be sure I don't have anything in addition. I'm interested to hear about anyone's experiences with neurologists.

 

[Alvin2]

Go for it.
That said i don't know your symptoms or if in the USA what it would cost you.

 

[heapsreal]

It's Good to get an MRI done to rule out obvious things. But in general I think many specialists can be a waste of time for us cfsers, unless the specialist is known to help treat cfsme or you have an obvious condition or issue they can handle.

 

[Wishful]

If you feel that you have a non-ME neurological problem that can be diagnosed by standard testing, then yes. Neurologists are highly unlikely to be helpful for anything ME related.

 

[GreenEdge]

I'm interested to hear about anyone's experiences with neurologists.

Have you seen these 2 polls?
Which type of doctor have you found to be the LEAST helpful? (POLL)
Which type of doctor have you found to be the MOST helpful? (POLL)

 

[Tammy]

I've been to 7 different neurologists over the years. Didn't benefit me in the least and the last one I went to gaslighted me. That's just my personal experience though. As another member mentioned it could be good to rule some things out...................might be worth at least one visit.

 

[BrightCandle]

I saw a neurologist, they were the only person to give me any drugs, none of which worked. But they also discharged me without helping and pumped me off to a headache clinic that discharged me without even seeing me. I don't rate neurology, we aren't interesting to them as there is nothing to cut open.

 

[Aidan]

Have you seen these 2 polls?
Which type of doctor have you found to be the LEAST helpful? (POLL)
Which type of doctor have you found to be the MOST helpful? (POLL)

I hadn't seen those, thanks for sharing that's interesting to know

 

[Aidan]

I've been to 7 different neurologists over the years. Didn't benefit me in the least and the last one I went to gaslighted me. That's just my personal experience though. As another member mentioned it could be good to rule some things out...................might be worth at least one visit.

Thanks for sharing your experience. I think I will only go if I can find specific neurological conditions matching my symptoms that they could check me for

 

[Aidan]

I saw a neurologist, they were the only person to give me any drugs, none of which worked. But they also discharged me without helping and pumped me off to a headache clinic that discharged me without even seeing me. I don't rate neurology, we aren't interesting to them as there is nothing to cut open.

Definitely sounds like your negative experience is common for cfs sufferers seeing neurologists, thanks for sharing

 

[Zebra]

Hi, @Aidan

Food for thought, since you are asking:

Because of a lack of biomarker, ME/CFS is often considered a "diagnosis of exclusion".

The Stanford ME/CFS Clinic used to have a required list of conditions that must be investigated and ruled out before they would offer a patient a first-time appointment/evaluation. I recall that several of the diseases listed were neurological or neuromuscular diseases.

If you go to the Stanford ME/CFS patient website, a list of examples of diseases to rule out may still exist and might be helpful to you as you consider your symptoms and possible visit to a neurologist.

Best wishes!

Edited to add: I found the list! Buried in FAQ section.

https://med.stanford.edu/chronicfatiguesyndrome/faq.html

 

[wabi-sabi]

My experience with neurologists has been quite varied. Most of them have been fairly condescending. But recently I had better luck and found one that is actually helping. Unfortunately it seems to be luck of the draw if you get a good or bad one.

I would recommend you try. This person is testing me for some rare autoimmune and genetic neurologic disease (hopefully you have already had MS and all the normal neuro diseases ruled out?) He is also treating my orthostatic issues, which other docs have not done successfully.

 

[heapsreal]

I can't remember his name but this dr had a really good forum on things like adrenal fatigue which he'd say was dysfunction, low mood, low energy and sleep issues. But his qualifications were broad specialities, neurologist, psychiatrist and endocrinologist and he'd answer many people on his forum. Last I looked at his forum it was low in traffic. But if I find it I will post a link.

 

[heapsreal]

I can't remember his name but this dr had a really good forum on things like adrenal fatigue which he'd say was dysfunction, low mood, low energy and sleep issues. But his qualifications were broad specialities, neurologist, psychiatrist and endocrinologist and he'd answer many people on his forum. Last I looked at his forum it was low in traffic. But if I find it I will post a link.

http://definitivemind.com/forums/forum/discussion-forums/
Found it, the section under signals is quite interesting. It's worth checking them all out though.

 

[lenora]

Hello @Aidan.....I've been incredibly fortunate with my neurologist and I've been seeing him for approx. 35 years. We both "started" together. Other doctors knew there was something wrong and kept referring me until I reached this (then) young man.

You really should have as many conditions as possible ruled out. There are many things that have the exact same symptoms and it takes specialized tests (and lots of time) to know you're free of them.

My neurologist has almost become my general doctor. He knows a lot about neurological deficits, as well as vitamins and herbs. Like I said, pure luck. He has helped me through so much in my life and I'm forever grateful to him.

You'll need an MRI, with and without contrast...unless an allergy is involved. A new machine is best as well as new methods of having the MRI. Always keep copies of the CD's yourself and in addition to the radiology report, have every doctor read the CD. You'd be surprised at how many things are missed. MRI's are a good way to see inside the body without having what used to be common - exploratory surgery.

I was an early patient, so won't even pretend to know what's available for testing today. My neuro does stay on top of all new drugs (I also have FM as well as two other neurological illnesses and heart disease). In the early days, we had nothing....not even something as simple as gabapentin for pain. We were all guinea pigs, including the doctors. So don't expect to walk out cured or even to have an answer....you just want other obvious illnesses to be ruled out. At the very least, print-outs of the illness will be provided.

Today there are things that help, but no cures at all. I've tried almost everything available and have never found the magic bullet. Still, you may get a diagnosis and you'll need it. I don't know if you're handicapped or not (many of us can walk, but not far), you can ask for a handicapped tag or even a license. I don't go out much any longer, but there were certain days when it helped a lot.

Rheumatologists also tend to know more about our illness, so failing a neurologist then that may be your next bet.

Please bear in mind that your first appt. may take months. Right now the U.S. is experiencing a severe shortage of specialists, especially neurologists. Be sure to tell them that it's your first appt., and ask to be put on a cancellation list if at all possible. Prepare a list of pertinent questions (but not everything that's troubling you). You may/may not be seen by a Physician's Assistant and some of them are extremely knowledgeable. Good luck in your search. Yours, Lenora

 

[Nord Wolf]

I had a neurologist in-state that was horrible. Actually the entire neurology department was crap. My doc sent me to the neurology department at Dartmouth and what a huge difference. They are very open to research and studies on ME/CFS, willing to order any test that other doctors who specialize in ME/CFS recommend, and so far are doing a fair job moving outside the box.

For me they have been incredibly astute in the detailed study of my history. Though they fully believe in ME/CFS, they are open and wiling to explore as many other avenues as necessary to rule out other possible factors at play.

Next week I’m going in for a follow up high contrast brain MRI since the last one showed a slight abnormality in the front of the brain, as well as a complete MRS, as talked about in this thread:

https://forums.phoenixrising.me/thr...inflammation-in-the-brain.88061/#post-2405329

They also performed various types of nerve testing since I was heavily poisoned with a hybrid form of arsenic trioxide years back.

Personally I feel the more information we can gather, from a variety of medical angles, the more we have to work with in the long run.

 

[Alvin2]

Thanks for sharing your experience. I think I will only go if I can find specific neurological conditions matching my symptoms that they could check me for

In this case you don't need the neurologist.

It is worth doing because if you have something treatable your just losing out by not getting it diagnosed.