PN for 12 years... Now Twitches and neurologist suspects ALS? Please advice.

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dimat2005

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Hi everyone, my name is Dimitry, I am 38 years old male from Philadelphia, PA. I would like to apologize upfront for grammar and spelling errors since I am not a native speaker, I am an immigrant, originally from Belarus, immigrated to the US in June of 2002.

My story starts back in 2009 when I first noticed numbness in my feet right around my toes area, during that time I was overweight ( 6'4/285lbs) and probably had pre-diabetes, at least all symptoms were pointing to this. I was not paying attention to numbness as it did not really affect my life's quality and did not do anything about it, also at that time I noticed that my feet really hurt after long walks. Another thing was my back, when doing a long walk I would start feeling burning pain in the left area right between my shoulder blades, this pain would travel under my arm pit and into my left rib cage.

Around mid 2010 I started developing other symptoms like pins and needles, tingling, heat/cold, burning pains in my feet, again I was 26 years old, did not feel that my quality of life was affected much by this and did not do anything about it. Right about that time I also developed an irritated bowel syndrome (IBS) and also I had sudden rib cage pain attacks where I would get a sudden sharp pain in my left or right rib cage that would be so bad that I could catch a breath.

Right around late 2010, early 2011, around March of 2011 I went through a break up and it resulted in an enormous deal of emotional stress, I got into Alcoholism and Cocaine addiction. Very sad and stupid part of my life, lots of wasted money, time and life energy. Around early September of 2012 after a night of drinking and cocaine I started feeling anxious and could not catch a breath, I immediately started thinking that I was dying, called the ambulance, they took me to the hospital, checked me up, found out that I had chronic hypertension and Also told me that I suffered a really bad panic attack, let me go after 3 days in the hospital. However my panic attack did not go away, I went into a really bad anxiety condition which kept me thinking that I had a heart condition and I was about to die, finally I was not able to deal with it alone, bought a plane ticket and went back to Belarus to my parents, took me 5 months to overthink my life and get rid off panic, went through many costly procedures, tests and therapies.

Came back home to Philadelphia late January of 2013, got lucky and met a beautiful girl, the love of my life, we had a baby boy in May of 2014, I got into trucking business, driving a truck coast to coast hauling refrigerator, bringing fresh produce to your local grocery stores) I loved my job, really enjoyed it. However my health situation was not great, I was overweight, close to 300 lbs, drove truck mostly at night to avoid traffic, bad diet, high blood pressure medication was not really doing a good job.

MY FEET got worse, around early 2018 I have noticed that my right arm felt a bit differently I felt pain when i was lifting it, but i really think that all this came from the way i drive my truck and sleep at night, I sit in a captain chair constantly putting pressure on my right arm and shoulder and when I go to sleep, I always sleep on my right side with my right arm and shoulder under the pillow, was very painful to walk, still had burning and tingling pain, cold/hot feet plus I started having GOUT attacks, and a bunion problem, which runs in my family, on my mom's side. Left side lower back pain and numbness with burning in my left outtwr thigh.

In November of 2019, I developed a stomach problem after taking an antibiotic, I was 3000 miles from home when It started, while driving back home from California I was not able to eat anything and lost about 15lbs in 4.5 days. When I got home I tried to see my local GI doctor but it turned out that I had to wait 2 months for the next appointment available, after trying several other offices and most of them gave me a similar wait time, I bought a plane ticket and flew to Belarus to my parents and decided to spend a few weeks there, do toes are very easy to see there, pretty much right away if you pay for your visit, fixing my stomach problem and addressing other health issues I was dealing with for years.

After correcting my stomach situation I went to Neurologist and spine doctor to see what can be done about my feet. We did spine cord MRI which surprisingly came out ok, there were no major problems, they did find osteochondrosis in my neck and some other minor things, I was sure that I had stenosis or smth. like that, but no. Next I went to see a neurologist, she did EMG on my lower limbs and did say that I have neuropathy, axonal motorsensory type, more sensory. She told me that since by that time I already had it for almost 10 years, there was nothing that she could do about it.

I went back home to the US, kept living my life, working, taking care of my family. COVID hit, I hauled food through the whole pandemic, in Nov. Of 2021 I saw a cardiologist who prescribed me allopurinol for my GOUT and after taking it for about a month I notice that I felt a lot less pain when walking.

RIght on Chrismas day, 2021 I got Covid, It was a bad one, with pneumonia and 1 month recovery, and I have also experienced some bad leg and joint pains. After recovering I made a decision to try to my best to correct my health situation, I switched to a plant based diet, lost 40lbs, started doing daily 3 miles walks, but my feet kept feeling strange, most of the time they were cold, numb and stiff, stiffness and numbness is present mostly in toes and ball of foot areas AND TWICHES, 85% of twiches are in my legs, they happen constantly, I get them in my shoulders, sometimes I feel them in my spine, biceps area, triceps area. It got me worried,

I started researching about my neuropathy condition and my twiches, brought myself to a very high state of anxiety and on March 1st my wife and I went to see a Neurologist, Dr. Olga Katz, her practice is in downtown Philadelphia, we got in, she examined me, and said that I do have hyperreflexia 3+, and twiches and that She is on high alert for ALS. She ordered some blood work, C spine and T spine MRI and EMG and Nerve Conduction 4 limbs plus tongue.

On March 10th I went to see Dr. Liane Sher at Methodist Jefferson hospital who performed and EMG and Nerve conduction tests, after completing the tests she told me that she does not believe that I have ALS, she did confirm neuropathy and told me that my reflexes were a little brisk, she did not see any evidence of any disfunction in my central nervious system, and also she did mention a pinched nerve, but she did not say anything about the twiches. I was kind of satisfied with the outcome and forgot to ask her about the twiches, I know it is super stupid. But, right after I left the hospital I called her and asked about the twiches, and her response was that she did not know what caused them, she told me to relax and keep moving with my life.

I NOW GET TWICHES ALL THE TIME AND DO NOT KNOW WHAT TO THINK. MY FEET? THEY ARE COLD WHEN THE WEATHER IS COLD, THEY ARE NORMAL WHEN THE WEATHER IS WARM, THEY ARE BOTH STIFF IN JOINTS AREA, MOSTLY AROUND MY BIG TOE AND FEELS STIFF WHEN I WALK, BUT STIFNESS GOES AWAY AFTER I WALK FOR A MILE OR SO. I CANT SAY THAT I FEEL WEAK, I HAVE SOME MUSCLE LOSS IN MY LEGS SINCE A WAS LOOSING WEIGHT PURPOSELY FOR THE LAST 2 MONTHS. SO YES LEGS LOOK SMALLER, ARMS LOOK SMALLER BUT MOSTLY BECAUSE I WANTED TO LOOSE WEIGHT AND WAS DOING IT AND MUSCLE MASS WILL BE LOST, I LOST 40LBS IN THE LAST 2 MONTHS, IT IS S A GOOD AMOUNT OF WEIGHT.

PLEASE LET ME KNOW WHAT DO YOU THINK ABOUT THE TWICHES? I am in a permanent state of anxiety! ALS or not???
 
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lgelb

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If your EMG only showed neuropathy and not motor neuron disease, I would believe it, along with the examination by the neurologist who ordered it.

As you say, gout, glucose issues (whether diabetes or numbers bouncing around), obesity, bad diet, etc. may all contribute to the pain and twitching. I am glad you are losing weight but 40 lb in 2 mos is a lot and should be under medical supervision. It is easy to have nutritional deficits with a rapid weight loss if you do not keep a handle on things, and yes, the way your muscles look can be affected, too. A fitness specialist can advise you on exercise to avoid too much muscle loss.

So no, I see no reason to worry about ALS. As you will have read, twitching in itself does not mean anything and I believe if you take more steps toward good health you will find that it diminishes.

Best,
Laurie
 

dimat2005

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Thank you for the opinion. But what do you think k about 3+ ( brisk reflexes) ?
 

lgelb

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I don't think anything of it. Two neurologists have noted it, but it could still be related to lifestyle factors, electolyte imbalance, etc., rather than neurological disease that they don't see, apart from the neuropathy. Without signs of ALS, Parkinson's, MS, stroke, etc. on exam or EMG, there is not much to say -- a good thing.
 

dimat2005

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Could you guys please help me to read and understand My EMG and Nerve conduction study. I absolutely cant read what the doctor wrote there. I really appreciate all your help and support, thank you!
 

ShiftKicker

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Hello- if you could re-post with your personal information obscured, that would be appreciated. That includes such things as personal health number, full name, birthdate, address, etc.
 

Nikki J

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You misunderstood Fiona’s request We do not want your personal information displayed on the internet for your own protection. The ncs emg report you tried to post showed some of that. Look at the report and block your name and anything else that could identify you like your date of birth medical record number etc. then post the report.
 
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