Neurologist Appointment. Requesting Simple Strategy

[Howard]

I've been receiving a number of helpful (in the least) suggestions on and within the "Please Help - Psych Ward ..." thread. Among them? Have a strategy for my initial neurologist appointment on Thursday.

I require a simple outline to hand off to the doctor, as it appears my actual time with him will be limited to 10 minutes (brief summary M.E./C.F.S. highlighting/comparing my symptoms?)

My goal is to have authorized a muscle biopsy. Beyond that, the extent of my previous neurologist visit yielded unremarkable results from a nerve conduction study (2013).

As opposed to many of you, my knowledge is very "high level" across the board, so any advanced concepts will be difficult to incorporate. I am familiar with the terminology, but know not how to apply it.

Additionally, this appointment is leading up and into a meeting with a C.F.S./M.E. friendly doctor in March of 2022. I am hoping that any tests or actions relating to this week's appointment will be of use then.

Also, as I am in a nursing home, I can neither count on, nor expect, any additional doctoring between now and then (especially not in-house… although perhaps the neurologist could "refer" me out).

Thank you for any help provided. Ideally, I'll be able to copy, paste, and have the staff print something out for me, prior to Thursday (based upon your suggestions)... perhaps one page simplified, then one more with more advanced concepts. I'll leave it up to you to decide.

Howard



Note: for anyone who does not already know.. I have been bed-bound 24/7 since 2015, and have had few medical workups. I experience Severe PEM shortly after muscle use or physical pressure applied directly to muscles. PEM Duration = minutes to hours, dependent upon intensity.

 

[Rufous McKinney]

Figuring out what a neurologist can evaluate seems like a first step since they are arriving soon.

if you could get an electrocardiologist evaluation and an MRI type evaluation, seems like that might help with figuring something out.

I'll hope smart helpers show up here to give you good advice!

 

[Shanti1]

I often make a 1 page write up with the following categories:

History: A brief history of my condition (with only the info in it that I think will be useful to the doc and to getting my goals met)
Meds: Medications
Past Labs: some times I will just put any previous abnormal findings.. most of my labs look normal
Symptoms: (with emphasis on the most concerning, or the ones I want the doc to focus on)
My main objectives: I think this is nice because it tells the doc what we are hoping to get from the visit.
Questions: I will put my top 2-3 questions here to try to make sure they get covered

I always hope that the doc reads this before they come into the visit, but they usually read it once they are in the room.

 

[andyguitar]

Also, as I am in a nursing home, I can neither count on, nor expect, any additional doctoring between now and then (especially not in-house… although perhaps the neurologist could "refer" me out).

The only thing I would add to what has been suggested is to be careful about asking the neuro to refer you to someone else as the "someone else" might be a psychiatrist.

 

[vision blue]

Is it a done deal that he will order the muscle biopsy that you want? If not maybe focus/play up on those symptoms that will make him want to order it That may be all thev10 min allows for and u do t want to get detailed from your primary goal.

if you have weak muscles you may want to ask if he thinks you have a mitochdrial myopathy eapecially if you have other symptoms that go with that.

are there other tests or treeatments you are hoping he will give?

 

[Howard]

I often make a 1 page write up with the following categories:

I typically do the same. "Objectives" is a good one though. Thanks

 

[Howard]

Is it a done deal that he will order the muscle biopsy that you want?

I'm hoping that's what happens. It's something that was supposed to be done five years ago, but ...

 

[Shanti1]

I'm hoping that's what happens. It's something that was supposed to be done five years ago, but ...

When they do the muscle biopsy do you think they will look for small fiber neuropathy? If you think you have that, it is usually visible on biopsy, which is the gold standard for detection.

 

[Seadragon]

@Howard As @Shanti1 mentioned, could you ask for a skin punch nerve biopsy? Also an EMG? The latter (the EMG and also nerve conduction studies) may be done as standard practice anyway.
Sending hugs

 

[Judee]

You might ask @gbells what a full neuropsychology exam is. He talks about it in this thread: https://forums.phoenixrising.me/thr...e-at-the-alj-hearing-2021.84387/#post-2352874

I'm not sure if that's something that a neurologist would do but it could be helpful for your diagnosis maybe.

 

[lenora]

If it's a thorough work-up there is every chance that Howard will have to see a psychiatrist. This is not ALWAYS a bad thing....please just take it for what it's worth, Howard. I'd rather see him have a very thorough work-up than one that lacking in some important detail. Best of luck, @Howard and let us know how you get along. Perhaps someone like @Pyrrhus may have some ideas for you. Yours, Lenora.

 

[Howard]

I mentioned this on the other thread, but my all-new medical advocate has agreed to listen-in on my appointment with the neurologist today. She's very knowledgeable in regards to small fiber neuropathy and related autonomic/central nervous system dysfunction (including biopsy procedures).

So basically, concerning all of the suggestions made here, she is at least aware/familiar (honestly, I have no idea what she's talking about much of the time, in regards to neuro matters).

H

 

[Howard]

The brief appointment (10 minutes) went as well as could be expected. The neurologist wants to run a series of tests (see below), before branching out. He also didn't flinch in regards to there being a possible C.F.S./M.E. diagnosis... nor did he hint at any psych related issues.

Upper and Lower EMG
MRI, Lumbar Spine, W/o Contrast
MRI, Cervical Spine, W/o Contrast
MRI, Brain, W/o Contrast
MRI, Thoracic Spine, W/o Contrast

 

[andyguitar]

He also didn't flinch in regards to there being a possible C.F.S./M.E. diagnosis... nor did he hint at any psych related issues.

It's a very good result @Howard how times change eh?

 

[Judee]

my all-new medical advocate has agreed to listen-in on my appointment with the neurologist today. She's very knowledgeable in regards to small fiber neuropathy and related autonomic/central nervous system dysfunction (including biopsy procedures).

The brief appointment (10 minutes) went as well as could be expected. The neurologist wants to run a series of tests (see below), before branching out. He also didn't flinch in regards to there being a possible C.F.S./M.E. diagnosis... nor did he hint at any psych related issues.

Hurray!!!!

 

[Learner1]

The brief appointment (10 minutes) went as well as could be expected. The neurologist wants to run a series of tests (see below), before branching out. He also didn't flinch in regards to there being a possible C.F.S./M.E. diagnosis... nor did he hint at any psych related issues.

Upper and Lower EMG
MRI, Lumbar Spine, W/o Contrast
MRI, Cervical Spine, W/o Contrast
MRI, Brain, W/o Contrast
MRI, Thoracic Spine, W/o Contrast

Any bloodwork?

 

[Howard]

Any bloodwork?

Actually, yes..

Vitamin B6 (Pyridoxine), Plasma
Tsh + Free T4, Serum
Ck (Creatine Kinase), Total, Serum
Vitamin B12, Serum

 

[Learner1]

Actually, yes..

Vitamin B6 (Pyridoxine), Plasma
Tsh + Free T4, Serum
Ck (Creatine Kinase), Total, Serum
Vitamin B12, Serum

That's a start.

Methylmalonic acid is the "gold standard" test for B12, as serum B12 may not flag a deficiency.

Many chronically ill patients have "low T3 syndrome," which will not show up if you only test TSH and FT4. You would also need FT3 and, ideally, reverse T3.

And, how about:

Complete blood count
Comprehensive metabolic panel
RBC or serum folate
Vitamin D
Thiamine
Ferritin
Immunoglobulins with subclasses
Natural killer cell function
Epstein Barr antibodies and PCR
HHV6 antibodies and PCR
Antinuclear antibodies
d-dimer
Westergarden sedimentation rate
Aldosterone
Cortisol
ACTH
DHEA
Testosterone

 

[Howard]

That's a start.

Methylmalonic acid is the "gold standard" test for B12, as serum B12 may not flag a deficiency.

Many chronically ill patients have "low T3 syndrome," which will not show up if you only test TSH and FT4. You would also need FT3 and, ideally, reverse T3.

And, how about:

Complete blood count
Comprehensive metabolic panel
RBC or serum folate
Vitamin D
Thiamine
Ferritin
Immunoglobulins with subclasses
Natural killer cell function
Epstein Barr antibodies and PCR
HHV6 antibodies and PCR
Antinuclear antibodies
d-dimer
Westergarden sedimentation rate
Aldosterone
Cortisol
ACTH
DHEA
Testosterone

Thanks, I'll present this list at my next appointment.. also suggesting Methylmalonic acid and the t3

 

[lenora]

Hello @Howard.....A 10 minute appointment isn't very long, but you managed to at least start with a baseline. Good work!

May I ask why the MRI's aren't also included with contrast? Are you allergic? If not, that's the only thing I would question....at least at this point.

Personally, between CAT and MRI's I can withstand whatever has to be done. I've noted that the time involved is generally shorter than what they predict. Did you say there was a hospital next door? I recall that there was. Hope you're managing OK, but you'll write to us when you can. Yours, Lenora.