Trying to figure life out...
 

Hello everyone, new to the forum. Not sure if i am supposed to post a little bit about myself and what i've been experiencing over the past 7 months or so, but if not, i'll move it to the right topic area.

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/fascination 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 fascinations 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.

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.

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. My grip seems to be strong (55/120 kgs/lbs force), it's more of a coordination and fumbling things issue.

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

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

I saw a Rheumotolgist 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.

Thank you everyone for having me and sorry about the long winded first post. Like everyone else, at this age, i am freaked out, scared, nervous and all of the other like words to describe lost and alone. My biggest fear would be this being one of the progressive diseases there is no coming back from. I will be having more tests in March. I am hoping to have more answers or at least rule out more possibilities.

OP: Looking at all you posted what stood out was A1C as being high, to me that's not high. Mine is usually 5.5 to 5.6 or so.

You mention a lot of standards, well I'm not a big fan of lab numbers, we are symptoms. And your thyroid could be sluggish and might need some help, as I've been that route a long while ago, and it was hard as the docs kept telling me my numbers are good...then a great ole D.O. in my life gave me desiccated thyroid support and no labs nadda, he knew, he was from the old school of symptoms. This changed my life at that time.

Today's docs sadly follow the numbers.

I can tell you Inosine works good for me with neuropathy pain/tingle.

Grape Seed Extract has done wonders to keep my Immune System strong. Strong Immune System is important to fight off all that may come our way.

There is a lot of information here and I'm just touching on a couple as I see it. Do a lot of reading around here.,

Hi Nemini

Welcome to NeuroTalk :).

The tests that the doctors have run look sensible to me.

You might find the Search option useful (https://www.neurotalk.org/search.php) ). You can use it to find threads and topics here which may help you.

Best wishes.

Hi Nemini,
Welcome to the NeuroTalk Support Groups.

You could try running a forum search for the word "Fasciculation" or "Fasciculations".

Advanced Forum Search Feature
Need to get the spelling correct.

Try not to think of the worst. It's a good sign if all your tests are pretty good.

Did these fasciculations start before or after the Cymbalta? ADDED: I just re-read your post and figure they started before the Cymbalta. I was just curious becaus "muscle twitches" are listed as potential side-effects of Cymbalta.

Yes, I had them before I started Cymbalta, I started with Lexapro and then switched after month.

Would it be better if I post this on the PN board to get more activity. I realize this is the welcome thread, but just wanted to really say hello and start the conversations. I realize everyone's scenario is unique which makes dialing in on the specific diagnosis difficult.

Hi again,
Makes sense to post on PN as well.
You could maybe just copy/paste into a New Thread to make it easier. Check out NeuroMuscular as well perhaps?

You're really through just the first round--
 

--of potential tests for neuropathic syndromes; the next round, which you might have to go to a tertiary center to get, would involve much more sophisticated serological testing, such as specific antibodies to peripheral nerve (as this sounds systemic).

Take a look at:


Quest Diagnostics: Test Directory

An Algorithm for the Evaluation of Peripheral Neuropathy - American Family Physician

Welcome Nemini. :Wave-Hello:

Nemini, welcome!:)

I hope you can find some answers that will help you very soon.

You mentioned that some body hair isn't growing back. I'm afraid that happens to many of us as we get older. Years ago I had leg hair. Nowadays I don't. Not a sign of it for years.

And I don't know who told you that the HbA1C reading of 5.2 was a little high. Maybe the lab was using a different scale but I've had lots of HbA1C tests and been praised for having a low reading, between 5 and 6.

All About Your A1C

I wonder about the ANA figure too, which you say is "slightly elevated" at 1:40, because

That is taken from

Antinuclear Antibody Test Normal Range & Interpretation

Also you mention that you lost 20 lbs. If you lost the weight over too short a period of time, some of the problems you're noticing might be due to that rapid weight loss. Your body may need more time to settle down. I've often heard that it's not a good idea to lose more than 2 lbs. a week.