Possible PN or other stuff?
 

Hello everyone, new to the forum. Figured i would post what i've been experiencing over the past 7 months or so, hoping for a little support and hear from others on what they've been experiencing and if it aligns with my story at all.

I am a 36 year old male and noticed stuff in August of 2020.

Legs/Feet:
This is where it first started as tingling in my feet. The right foot was a bit more noticeable but it was there for both. Within a month or so my toes became more and more numb and i developed a twitching/fasciculations in my calfs that really only occurred at rest. Fast forward about 5 or so months and numbness and tingling has mostly gone away. Every so often i have pins and needles in the arches of my foot but only notice it when i'm resting, the fasciculations in my calfs occur maybe once a day for a short period, if that, but in the middle of December i started getting these sharp pains in my large toes, like someone was hammering a nail into my toe, it was a very sharp, acute pain. It was pretty bad at first, but for the most part, as of today, it occurs maybe once every couple days rather than numerous times a day. As of late i've notice a lot more muscle twitching, the kind where you randomly just twitch like when you're extremely tired and falling asleep.

Arms/Hands:
My fingers and arms started experiencing symptoms about a month after the feet. I would have constant numbness in my fingers and if i had pressure on a nerve to long in my arm, it would fall asleep almost instantly. Fast-forward to today, and the falling asleep has gotten much better, i still have a little numbness in my finger tips, but it's not as noticeable as before. I do have muscle twitches ever so often, in my shoulder area, but it's rare. My right should and tricep seem to be very very sore as of late, i notice a little bit in my left arm as well and i struggle to pick up items and fumble them a lot.

Face:
My face started having some minor fascinations after a couple months, mostly by my mouth, but a few weeks/month back my eyelids were twitching off and on for about a week. Lately i've had minor tongue tingling and difficulty swallowing and excess saliva.

Today:
Less occurring fascinations in my calfs, major fatigue of my legs, i feel like i have to focus walking. Not really tripping or anything just coordination is way off. My hand's and arms also feel really fatigued. I struggle to grab items, sometimes i notice i miss turning off a light switch, it takes a couple tries. I have to think about holding cups, i don't drop them but my grip just feels weak. I do fumble with small items a lot. Randomly drop my phone when i shift positions, or other small items. This has been going on for quite some time now. My tongue does have tiny fascinations all the time but they are very small and could be due to stress/high anxiety from this whole situation. They are barely noticeable at rest, but my throat has been extremely sore and i struggle to swallow food without drinking some water.

I have lost a ton of weight. I am down about 20pds. I feel like my skin has changed, it feels really elastic (i drink about 60oz+ a day) so i don't think it's dehydration. Some hair on my stomach isn't really growing back at all. Still ahve the hair on my arms/legs, and my head (minus the same balding rate i've been going over the past decade).

I don't feel like i am losing a ton of strength, minus the weight loss which could play a part. I am still able to do a normal amount of exercises, and lift a healthy amount of weight at the gym. I do not try and push myself anymore but just want to keep active and in shape.

So... What tests have i gone through, well let's see...
Blood Tests
Vitamin panels came back standard
T3/T4 Free came back standard
Hep B/C came back standard
Sjogrens A/B syndrome came back negative
Smith and Smith RNP came back negative
Compliment C3/C4 came back standard
Heavy metals came back negative
Thyroid levels came back standard

Hgb A1C came back a little high at 5.2%
ANA came back slightly elevated at 1:40 titer

I saw a Rheumatologist who also ran the ANA again among many other blood tests and it came back the same. She believes it's a false positive and nothing to worry about.

Scans:
Brain MRI came back unremarkable
EMG/NCS came back relatively normal, right arm/elbow was said to be a little abnormal but nothing concerning
CSpine came back unremarkable
XR Spine showed mild facet arthropathy at L5-S1
CT Lower back came back unremarkable

I can't really think of much else right now, but if i do, i'll be sure to add it. I've been taking Cymbalta now for a couple months. Don't really feel like it does much for my mood, anxiety or nerves. It probably is, because i don't know what things feel like off the medicine.

Lately, the lack of coordination with my legs/feet and hands, pain in my arms have really been freaking me out. I don't know enough at this point to know what's going on but obviously, the first thing that comes to mind is ALS/MS possibilities. I am hoping i can hear some experiences from others and truly hope the feeling of weakness, coordination and hand fumbling/focus issue is something else others in the PN world have been experiencing so that these symptoms are not isolated towards one of the more progressive diseases.

Thank you everyone for having me and sorry about the long winded first post. I will be having more tests in March. I am hoping to have more answers or at least rule out more possibilities.

With a complex issue/s that aren't clearly defined by tests you might consider consulting with a DO ( Doctor of Osteopathic Medicine).
Difference Between MD and DO: Choosing the Right Doctor for You

The DO Difference - Doctors That DO | Doctors of Osteopathic Medicine.

Family health history - if any similar or know health conditions. I'm sure Drs asked about that..

Any past injuries that might be showing up as you age?
Accidents, sports, falls etc. or possible toxin/chemical exposures?

As far as I am aware, i don't really have any family with history of PN. Diabetes does run in the family but my numbers looked OK from that aspect.

I would love to hear more about others experiences. Especially from the fatigue and perceived weakness aspect. I feel drained 24x7 and i my coordination is just gone. I struggle to flip off light switches (just miss)or pick up things the first try. My grip seems fine, but i fumble stuff a lot and my legs and arms feel drained all the time. I don't really feel like my strength is gone because if i focus or go work out i can still lift weights (somewhat normally). I can still do curls, and pull-ups and push-ups and leg press, etc. Outside of focusing on those types of activities, like walking down the hall or day to day things, it just feels different. Anyways, i look forward to hearing if i am going crazy or if these things do happen with others, what the experience has been like, etc.

Thanks again.

Sounds like more going on besides PN. Why not get into some good PT work? Strengthen your body. You sound like a young person..

And get some good antioxidants into your body.

Sounds like you still do heavy duty gym type work. Curls, etc.

You might also explore other health conditions on our site, or use the NT search tool for symptoms and see what comes up from all NT forums.

Reading other posts can be helpful for you to see if reported issues fit with yours.. And the sticky threads above each forum have helpful info..

Does family health history have any other conditions?
Don't focus on PN only until you are sure, keep an open mind.

Fatigue is a normal part of PN for many people including me. It takes a lot more effort and exertion to do things that you used to be able to do more easily, such as walking. going up stairs, standing. working on something over shoulder level, getting in and out of car,etc. it just takes more effort with balance problems, getting tired easily, etc. Pain can also lead to fatigue.

If by perception of weakness you mean a feeling of heaviness in legs or arms when you are using them for a while, i get that. my legs become very heavy feeling walking upstairs, or for more than a short distance. my 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.

Like you my actual strength is still good in my hands, feet, legs, and arms, even though my perception may not be that they are that strong still.

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..

The good thing is that you're improving. Your symptoms sound very much like mine and what I've dealt with since September 2020. The numbness, lack of coordination, tingling. I made the thread about stiffness on the main page describing my symptoms. So far you seem to be one of the few my symptoms align with. Only thing I had that you didn't was severed dizziness at the beginning.

As with you, my symptoms are ever so slowly improving. I'm still dealing with stiffness/numbness and tingling in my hands that varies day by day. Some random jerking as well. Hoping for a full recovery. Doctor suspects neuropathy. MRI and blood tests looked fine. EMG/NVC scheduled in a few weeks. Keep me posted.. we'll get through this.

I tried the ROOs test, i couldn't really do it for longer than a minute. But that would be a hard test for anyone. I am not super athletic, but i do workout a lot. I can do 15 pull-ups on average so i know my shoulder and lat strength is decent. I am still doing research.

On a side note, I haven't had any alcohol since December 15th. I started drinking a bit more when COVID hit, mostly after work. Things after 2 weeks started to get better, but then got worse again. So i am not sure if the alcohol was a main factor, but it seems to definitely contribute to some of the problems.

I was really hoping to hear if other people with PN experience the same things i have been with all the weakness, coordination and grip issues. It sounds like i will be getting a skin biopsy (punch test) in March, which is good news. The EMG/NCS came back normal, minus my right arm (slightly off) which is where i am having most of the issues lately. I also had some sort of injury back in the day from baseball with my right arm and the pain/throbbing does feel reminiscent of what i remember, but now it won't go away and seems to be getting worse, even after multiple ice sessions, etc. I read that EMG/NCS can usually tell well ahead of time if nerves are experiencing issues before the human even realizes its a problem, so i am hoping with the EMG/NCS test i had, that is good news. I am just grasping for straws and trying to eliminate the progressive stuff from my head, but once something get's in there, thanks to Dr. Google, it's nearly impossible to let go of it.

Thank you again for everything. This group is really the only outlet i have as i don't have anyone else i can talk to. I need to find a doctor that cares. I will look into a DO, but the problem is i just moved to a very small town and i'm sure anyone worth going to is hours away.

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.

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.

Welcome Nemini. :Tip-Hat:

what does BFS/CFS stand for?

Benign Fasciculation Syndrome & Cramp Fasciculation Syndrome

Cfs--
 

--is also used for Chronic Fatigue Syndrome, so it may be better to spell it out to forestall any ambiguity.

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.

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.

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.