Could this be ALS

nep521

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First, I want to thank all of you that provide help and insight to those of us who are anxiously trying to find out what is wrong with our bodies. I am a 49 year old male who up until 6 months ago would have said I have the perfect life and seemed in very good health.

My symptoms started with left bicep fasciculations in April 2020 that lasted about a week non-stop. Neurologist at UF Health ordered blood tests, MRIs of the brain and cervical spine, and an EMG last year and all were normal at that point. No real issues until May 2021 when I noticed arms would periodically feel tired. Not weak - just tired even if I hadn't done anything. They didn't seem comfortable even when just hanging at my sides like they've done for 49 years. Then I started noticing my tongue felt tired as well. Saw my PCP on this many times.

July 2021 my right hand felt like tightness which I felt was carpal tunnel and then I had constant twitching for 3 weeks in area between my right thumb and pointer finger (specifically the dorsal interoseous muscle). I also had numbness in the left arm/hand so my PCP referred me to a neurosurgeon to check the nerves. After reviewing the latest MRI on my brain, cervical and lumbar spine, the neurosurgeon reviewed everything on August 9th and felt it was a motor neuron, thus starting a scary phase of my life. August 10th meeting with a neurologist who specializes in Parkinsons (no one sure why he saw me first) showed no signs of MND and an EMG that was performed on Aug. 11th was normal - yes I did go from seeing a neurosurgeon one day to neurologist the next and EMG the following day. I felt good for a while and the issues in my hands seemed to go away.

Fast forward a few months and the areas of my arms that felt weak started to feel warm. No pain, just a warmth in them and then I started to lose muscle mass in the deltoids and biceps - more on the left but also on the right. A new neurologist did some blood tests and physical exam and said I have some brisk reflexes but he didn't see any strong signals of MND. He also said he wasn't very experienced with MND and referred me to the Mayo clinic which I will be going to in a couple of week. I have since seen yet another neurologist at UF Health who does have experience with MND and have had more tests including a full body CT and blood work with all being normal. The latest neurologist said he has eliminated muscle disease and nerve issues as the problem for the arm atrophy, arm muscle weakness and issues with my tongue. He feels the issue is a motor issue and is either motor neuron or neuromuscular junction (masthenia gravis). As I've read about both, my hope is for MG but my symptoms seem to more closely correlate to MND.

What used to be periodic weakness in my arms seems fairly constant and is one both sides. My arms slightly shake even when lifting a coffee cup although the weakness is greater in my left arm. My biceps are strong but my deltoids/shoulders are weak and anything that requires lifting my arms is getting more difficult. More concerning than that is the front third of my tongue feels tired and strained every day mostly all of the time even after I've just woken up. I've stopped talking as much and no one has noticed me slurring or sounding drunk because when I get to a word that feels like it'll be hard to get out, I change words. The back of my head at the base of my skull seems strained or tight (looks like the area of the cerebellum when I look at the area on a brain diagram) and I wonder if it's because I'm spending so much extra energy getting the words to come out of my mouth. Is the issue with my tongue somehow tied to the tightness in the base of my neck? Since I recently had a brain MRI and cervical MRI that didn't show any issues in that area of the brain, I'm not sure what to think.

My question to any of you is, when you had problems with your tongue, did it also include a tight, dull feeling at the back of your head in the center, near the base of the skull? Also, did your muscles feel warm as the muscles started to atrophy? I haven't lost full use of any muscles yet but I am definitely feeling a gradual weakness in a body that I've known for the past 49 years. My body is declining due to something and I'm hoping it's a temporary or treatable condition. I'm really searching for a ton of people to tell me that this does not present itself as ALS based on your experience so please let me know your thoughts. The clean EMGs have been reassuring in the past, but the changes in my tongues as well as my arm muscle tone and strength have me extremely worried. Thank you
 

KevinM

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I’m sorry to hear you are having these issues, and I hope you get a firm diagnosis, but honestly two clean EMG‘s more than a year apart should be reassuring.

Who did you see at UF Health? I was diagnosed and am under the care of Dr. Michael Pulley, who is a respected neuromuscular specialist that is the primary one there for ALS. He could not have been the neurologist that said he wasn’t experienced with ALS. If he was one that you saw and eliminated ALS, I would believe him.
 
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affected

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shaking when lifting things is not actually clinical weakness

I'll ask you to read this post carefully as I don't think you have - it answers all your concerns really well.

be assured, the changes are seen on EMG well before you might have symptoms. please return to your doctor and work through the process they feel is appropriate
 

nep521

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Kevin, the doctor who said he didn’t have the experience was a private practice neurologist at SIMED. At UF I’m working with Dr. Bruce Solomon. At our first meeting he said no issues with upper motor neurons. At our most recent meeting this week after reviewing the recent tests, he seemed to put it back on the table if the masthenia gravis tests come back negative. No recent EMG was done since the clean one was done 8/11/21.
 

KevinM

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I am not familiar with Dr. Solomon, but certainly Mayo has a fine neurology department and many find it preferable to UF Health.

I will add that the posts on this forum that Affected mentioned are certainly helpful, but in the end no one should rely on those to answer all your questions or concerns. You are doing the right thing that is advocated here, which is to seek professional evaluations by experts in their field instead of guessing or diagnosing from the internet.

No one on this site or any other has the ability to say from one post that yes, this is MND, or no it absolutely is not. Trust your professional evaluations. I’ll be optimistically hoping for a positive report back after your Mayo appointment. Kevin
 

affected

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definitely, we can give some opinions and directions, but only a doctor physically examining you and ordering and reviewing tests can tell you exactly what is going on, great point Kevin
the post I gave the link to answers all the basic concerns, in that it helps us not have to say the same things over thousands of times, in answer to commonly reported things people feel happening in their bodies :)
 

Nikki J

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I looked up Dr Solomon who looks very qualified but is a general neurologist and not a neuromuscular or ALS specialist so I am glad you are going to Mayo. I trust when you say clinic you mean ALS clinic? When ALS has been put on the table by a doctor it is important that the next step is to see an ALS specialist. Good luck. Let us know how it goes
 

lgelb

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You certainly need a seasoned neuromuscular evaluation, but if ALS is ruled out (as we hope will happen!), I would ask about evaluation for a lacunar syndrome, which is not always seen on initial MRI.

Best,
Laurie
 

nep521

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Thank you everyone for your thoughts and comments. You all have great hearts and I hope the best for each of you and your families. Having a very seasoned neurosurgeon throw out his concerns that I might have MND really started a difficult phase of my life but as you all are proving, positive energy is contagious. I am meeting with Dr. Jaimin Shah at the Mayo Clinic in Jacksonville in a few weeks and he is an ALS specialist from what I'm told. They will perform another EMG and I hope to get some better insight as to what’s going on with my body. As can be expected, I feel some anxiety but also some hopeful relief to have this meeting scheduled. If anyone has any knowledge or experience with Dr. Shah and/or the Mayo clinic in Ajax, I would really appreciate your feedback. Thank you and prayers and blessings to you all.
 
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