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Sief

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I’m concerned about my symptoms I’ve been facing them for just under 6 months.

Let me start out by saying that my life is very stressful. I manage about 500 people all over the world. The ups and downs of corporate politics are very impactful and my stress level in the last 6 months has been off of my personal charts.

The first thing that happened is that one day on a vacation (part of this was camping at a festival) in Spain in July, I noticed my left upper thigh was numb after getting out of the shower. Then as I dried off I realized my left mouth and lower part of my face was also numb. I got on a plane to another city in Spain that morning panicked and went to the er immediately after landing. They tested me for an stroke (cat scan, chest xrays, blood tests and observation for the day). They sent me away to finish my vacation and see a dr in the us to evaluate for ms.

My facial numbness now comes and goes. It’s mostly been gone lately. A week after the initial onset my right middle toe went numb.. Now after reading about ALS, I’m scared it’s weakness - but I’m not sure. In my shoes it sometimes feels like it’s not there. It’s super weird. My left upper thigh got some feeling back but is still numb.

When I arrived home I saw urgent care, GP, then a friend helped me get an MS specialist. I’ve had my head and entire spine mri done. (With a lower than 3T scanner and I opted out of the dye). All scans came back negative except for a unspecified spot on the brain which had ‘no clinical’ significance and an area in my cervical scan with stenosis. Both the neurologist in Spain and the one here said my neuro exam was normal minus the numbness.

Over the past week I visited my parents and slept on their couch. On the last day when I woke up I had facial numbness. While I was there I happened to watch a documentary where someone died from ALS. In googling ALS my symytoms scared me to the point of taking a tape measure to my muscles. (After checking, they are evenly sized). I have had bouts of facial numbness in my cheeks, lips and tongue which usually resolve in 24 hours (Here i wonder if this is weakness and I'm just getting used to it?).

Now my the back of my throat feels numb thinking about it - makes me think it’s been there for a while. Again here I’m worried that it could be weekness and not numbness. When I think about swallowing I notice it most. Drinking cold water makes it feel better for a bit. It feels as though my uvula is in the way and my throat also feels kind of closed. I have always been told I have big tonsils and a big uvula by drs. If I have had it for months it may have come and gone or I might just be laser focused now and perceiving it more.

Additional random tidbits:
I have had some form of sciatic pain for nearly 10 years. My back is super sore which I took as likely extreme stress. I decided to use my wife’s foam roller on it a bit and it’s helped calm it down. Stress used to come out of me by way of pimples and I don’t get those anymore. My gut is also a huge disaster - I went to a gi doc this past year too who told me my work travel and stress was the cause of my troubles there too after a ct scan etc.

I know seeing the doc is critical (I have my next apt in 3 weeks with this MS Doc) and that if what I’m experiencing is MS it could take years to show on an MRI. The MS doc told me to change my diet and consider making a career change to eliminate the stress. The ms dr told me to stay away from searching for info online (which is really hard advice).

What do you guys think?
 

Nikki J

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Not remotely like ALS. Numbness is not weakness. Weakness is loss of function and a motor issue. Numbness is a feeling and a sensory problem.

Even if you had weakness along with the numbness we would say not ALS. I have clinical weaness in all extremities. I have no numbness tingling pain etc

Good luck in finding your issue but the answer is not here
 

Sief

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Thank you for responding.

I appreciate your reassurance - I have to admit it’s hard to shut off the fear and constant second guessing, evaluating every part of my face, tongue legs etc. Wondering if I’m weaker or I can’t move some muscle with each strange feeling through out the day. Some days I even ask random people if my smile is uneven.
 

lgelb

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If you don't want this anxiety to take over your life, ask your doc about ways and means to address it, and of course likely one suggestion will continue to be a less stressful job. Often when we feel a loss of control or things are not as we want them in one area of life, we semi-obsessively seek it in other areas.

The initial numbness after camping -- had you slept on the ground, a cot, or another harder surface than you are used to? That can create pressure. Same for your parents' couch.

Best,
Laurie
 
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