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Old 02-09-2021, 02:32 PM #11
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Yeah it's all very strange. Makes you wonder if you're exposed to something to trigger it. I've noticed alcohol can at times make it worse... but caffeine and stress really trigger mine. The first couple months were definitely the worst of it. I'll be following along with your tests to stay updated. I'll likely be going down the same path. I hear that the emg/ncv is for large fiber and skin biopsy for small. If they suspect neuropathy, I'll keep pushing. I feel like if we just had answers as to what is happening, maybe it could relieve stress and allow us to work towards getting back to 100%. Show me evidence of what is wrong with me.. if not, rule out nerve damage ya know? As I said, things have improved, but still feeling 70-80%. I've looked through many posts and yours seems the most similar to mine.. even same time frame. We're gonna stay positive and work through it. I'm sure everything will pass in time
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Old 02-10-2021, 07:35 PM #12
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Originally Posted by PatAttack View Post
Yeah it's all very strange. Makes you wonder if you're exposed to something to trigger it. I've noticed alcohol can at times make it worse... but caffeine and stress really trigger mine. The first couple months were definitely the worst of it. I'll be following along with your tests to stay updated. I'll likely be going down the same path. I hear that the emg/ncv is for large fiber and skin biopsy for small. If they suspect neuropathy, I'll keep pushing. I feel like if we just had answers as to what is happening, maybe it could relieve stress and allow us to work towards getting back to 100%. Show me evidence of what is wrong with me.. if not, rule out nerve damage ya know? As I said, things have improved, but still feeling 70-80%. I've looked through many posts and yours seems the most similar to mine.. even same time frame. We're gonna stay positive and work through it. I'm sure everything will pass in time
Some weeks things seem pretty bleek, like the past two weeks have been pretty rough. I dread weaking up and trying to step out of bed and not being able to stand or randomly dropping stuff due to grip strength. That's where the real fear lies, is with this not getting any better.

Does anyone have more insight into the EMG/NCS tests and truly what that means? This was also 6 months ago, but a month after I started having all the tingling and numbness, etc. Dr. Google isn't the best at saying what it rules out and what it doesn't.
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Old 03-31-2021, 09:54 AM #13
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I went through another round of EMG/NCS tests yesterday morning and the two doctors concluded that I have BFS/CFS which are syndromes under the Peripheral Nerve Hyper-excitability Syndromes spectrum. This is only conclusive for large fiber Neuropathy. The rest of the tests I had done in prior weeks will diagnose whether or not small fiber Neuropathy is also present.
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Old 03-31-2021, 11:43 AM #14
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Welcome Nemini.
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Old 03-31-2021, 07:05 PM #15
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I went through another round of EMG/NCS tests yesterday morning and the two doctors concluded that I have BFS/CFS which are syndromes under the Peripheral Nerve Hyper-excitability Syndromes spectrum. This is only conclusive for large fiber Neuropathy. The rest of the tests I had done in prior weeks will diagnose whether or not small fiber Neuropathy is also present.
what does BFS/CFS stand for?
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Old 04-01-2021, 05:17 PM #16
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what does BFS/CFS stand for?
Benign Fasciculation Syndrome & Cramp Fasciculation Syndrome
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Old 04-02-2021, 07:56 AM #17
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--is also used for Chronic Fatigue Syndrome, so it may be better to spell it out to forestall any ambiguity.
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Old 04-27-2021, 11:41 AM #18
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Final results in. They have diagnosed me with Peripheral Nerve Hyper-excitability Syndromes: Benign Fasciculation Syndrome and Small Fiber Neuropathy based on the recent skin biopsy and EMG/NCS. I would be happy to chat with anyone if they have questions or just want to chat about their experiences. Thank you everyone for your support.
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Old 07-26-2021, 01:35 PM #19
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Symptoms seem to be progressing to a more cumbersome state. Ulnar nerve seems to be extremely sensitive at this time. Resting my arm down even for a few sections causes my entire arm to go numb, tingle and become rather bothersome. This wakes me up throughout the night as well. Toes and fingertips seem to have pin pricks randomly throughout the day, the pain level is tolerable, but definitely something that i notice quite often. I have ceased all alcohol intake as of July 7th, as even a single beer seems to amplify my symptoms over the coming days. I think this trend will be for the foreseeable future to see how this impacts my day to day lifestyle.

My alcohol intake in the past has been a bit more excessive than most (4-8)oz of Bourbon every evening, no drinking throughout the day). I took 3 months off earlier in the year, December 15th (2020) until March 14th-ish (2021). I did notice symptoms residing towards the very end of this abstinence. Giving this another try. All of my blood tests came back normal throughout my entire stint of testing, as mentioned throughout this post.

Looking for others who have a similar journey.
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Old 07-26-2021, 05:33 PM #20
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Interesting...
[arms get heavy also when using them especially when i have to raise them to work on something overhead like changing a light bulb in a ceiling fan. My hands also cramp up if i use them too long.]

That sounds like a blood flow issue that many with Thoracic Outlet Syndrome have..
Roos test..
Cold and Tingly Hands/Positive ROOS Test - YouTube
Shoulder - Orthopedic Tests - Physical Therapy Web

But...
*I think I read approximately 25% of people will have a positive Roos test without having actual TOS.
Proper head, neck, shoulder alignment may help with the issue..
Slumping or forward head or shoulders compresses the area.
upper body posture assessment - Google Search

If you have done a lot of desk or forward leaning/overhead activities, repetitive motions, it could be related to that factor..
We have more information on our TOS forum sticky threads.


I am curious if others with PN have similar arm heaviness/blood flow issues..
I don't think I've seen any PNers mention this in my years reading here, and none have responded to this question.

[Ulnar nerve seems to be extremely sensitive at this time. Resting my arm down even for a few sections causes my entire arm to go numb, tingle and become rather bothersome. This wakes me up throughout the night as well. ]

It is possible to have multiple conditions..
Please explore our TOS forum sticky threads for more in depth info, most MDs only have very limited (biased) knowledge of it..

Since you mentioned that issue first in your post, it must be the most bothersome symptom?
If it is gradually getting worse.. I strongly suggest looking into possible TOS and/or chronic RSI and therapy, PT, chiropractic and home care/posture before it becomes something chronic that might require needing Rx meds or surgery.

https://www.neurotalk.org/thoracic-outlet-syndrome/
sticky threads are in the upper section on the linked page.
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