New here with (maybe) mysterious neuro symptoms
 

Hi All,

I'm in the midst of a workup for episodic severe paresthesias, basically along all the pectoralis muscle attachments, plus arms, across shoulders, with feeling of instability in the legs, all bilaterally, dull ache in sternum and between shoulder blades, plus slight GERD like symptoms and slow transit constipation, and air hunger. First episode was mild, in Nov 2019, but scary enough that I went to ER to rule out atypical MI, which ruled out. Docs said it was GERD and anxiety. Had 2 more visits to ER with admission overnight, had CTA of chest, CT for PE, CT brain, cardiac US, cardiac enzymes, all neg. Had a feeling of core weakness and exhaustion after this episode for several weeks, like going back to work too soon after having the flu.

Pandemic hit, lost my job, was home and didn't really have another mild episode until I cleaned out closets in April 2020. That's when it occurred to me that it could be related to strenuous overhead work, which I did in 11/2019. I couldn't get a doctor to see me so I was just very careful with activities for the rest of the year.

At my PE Nov 2020, PCP suggested it might be abdominal migraine, despite none of my symptoms coming close to that.

2021 brought increased symptoms and in June 2021, asthma got worse. PFTs triggered a flareup as did a "diaphragm release" by and OD. She thought it might be injured phrenic nerve. Using arms in front of me or overhead seems to trigger. Saw a new PCP who said it was thoracic radiculopathy, 2 physiatrists who said they didn't know but ordered PT for core strengthening, Neurologist #1 said cervical spine disease but no need to come back. Pulmonologist said it was asthma and other symptoms are all in my head and welcome to old age. 2017 Cervical MRI shows all the usual wear and tears. 2017 and 12/2021 Thoracic MRI shows a few slight bulges or herniations, and desiccation.

Jan 29, 2022 had a really intense flare of paresthesias after doing some very light arm exercises after having arm and chest tingling while pushing an empty shopping cart. Neuro #2 did many labs to exclude autoimmune and thyroid disorders, and B12/methyl malonic acid. He ruled out MG and MS clinically. He thinks it's fibromyalgia. EMG/NCV is next week. We thought perhaps TOS but he didn't think it would be bilateral. He didn't think it was cervical disease for same reason. FM sort of fits but I don't have pain, except for right hip pain that started last July. I'm tired, but not sleeping well. He thinks I'm fatigued but not suffering from leg weakness. I disagree: my legs feel weak and rubbery. It took until a few days ago to be symptom-free. So here I am and looking forward to input and hopefully helping someone else.

Have you had an expert PT evaluation?
The hand, arm, overhead /in front sounds very TOS like to me..
If you raise arms up high do they turn pale, and flush when lowered?

Our TOS forum has much more good info that will help you decide if TOS might fit..
Even if it doesn't it could be a pre TOS or RSI of some sort, so the info is very beneficial. Explore the sticky threads there.

Many with TOS are tilted - high shoulder on one side , uneven hips, knees etc...
Posture work, expert PT or chiro might be good..
Top rib mobilization might help if tension around collar bone and limited breathing.
Forward head/shoulders/ hunched etc?

Xray or MRI to check C spine & for extra cervical ribs...

NTOS is nerve related VTOS is blood flow related

Few MDs know all the facts of TOS or ignore until it is full blown, then you might need surgery or pain meds.
Seek a TOS knowledgeable MD, PT, DC..some say they know but only limited knowledge..
That's why we have the stickys so others learn and can find the best care providers....
Don't stay with any that ignore to your concerns..
If just a few symptoms fit take action to reverse before it is chronic..

https://www.neurotalk.org/thoracic-outlet-syndrome/
sticky threads are above the main posting section..


TOS testing positions - Google Search

Hi Delia,
Welcome to the NeuroTalk Support Groups.

You've received such great information there from JoMar.

I hope you are able to find answers and relief from your symptoms very soon.
Take care...

Thanks Jomar,

Haven't had PT eval yet. The new neurologist was very well versed in TOS. I had been looking into it for a while and he did a lot of tests, asked a lot of questions. I don't have the extra cervical rib, no blanching, etc. I'm not a head-forward, shoulder sloucher and was in really great physical shape with a physical job until 11/2019. Despite all that, it might be a TOS AND radiculopathy. No one is yet interested in a C-spine MRI followup. It's trendy now to hear that nearly everyone has wear and tear in their spine I'm not sold on fibromyalgia yet. Still worried about MS, though no lesions on CT and MRI of T-spine. I am considering a consult with MSK Neurology after EMGs. Thanks for the links.

Thank you so much Lara. I hope I get relief, too.

How do I edit my original post with the big glaring error in the title that I missed? Ugh!

Hi DeliaC
I fixed your title for you :)

Thank you, Chemar!

Noticed you said you had CT of brain--
 

--but to truly rule out MS an MRI of the brain would also be called for; CT isn't anywhere near as good at picking up the characteristic brain abnormalities.

I only say this as MS lesions in the brain can have effects almost anywhere in the body depending on where and how extensive they are, and you have enough diversity in your symptoms and their locations to make that something to investigate/rule out.

Welcome DeliaC. :welcome_sign:

Welcome, DeliaC!

You've certainly been through a lot of tests and I hate to suggest more but agree with glenntaj that MS can't be ruled out without a brain MRI. Your symptoms don't sound much like MS but you never know because it's such an odd disorder and can show up in so many different ways.

When you say it's trendy now to hear that everyone has wear and tear in their spine, I don't know if this is such a recent trend. I heard that very thing back in 1978, and in 1980 I learned that my symptoms were due to MS. It is generally known that wear and tear on the spine is almost universal as we get older, though, and doctors often treat spine problems conservatively--avoiding surgery and recommending physical therapy and other measures instead.