Waiting for 2nd Neurologist Appt.

jordan1ad

New member
Joined
May 18, 2021
Messages
3
Reason
PALS
Diagnosis
05/2021
Country
US
State
NY
City
NY
Hi All,
Thank you in advance for taking the time to read this. I had an EMG on May 4th but was not able to get clear information from my 1st Neuro who seemed uncomfortable discussing my condition in terms I could understand. The first time I saw him, I was feeling fine and felt no weakness but we scheduled a follow up EMG and I suspect he was very surprised by the test results.

45yo Male

Approx. 2 years ago I started having regular abdominal cramps. They were always self induced and most often occurred while putting socks on or tying shoes. At the time, I did not realize that they were muscle cramps but instead believed I may have damaged my liver by consuming too much alcohol too regularly. I realize now that I also had trouble squatting or sitting on my knees with my children b/c I would get pain in my hips or the arch of my foot.

After going to PCP I ended up seeing a Gastroenterologist. He advised I reduce my alcohol consumption and focus on staying hydrated and making sure I was getting enough magnesium and potassium in my regular diet.

After Gastro I saw a Cardio who looked at blood and did stress test which I passed with flying colors. I stopped seeking a solution and got used to the cramping while focussing on drinking more water and less alcohol.

In January of this year my PCP noticed elevated CPK levels in my blood. I told her that my cramps persisted but I had gotten used to it. I was consuming less alcohol and less often but I was not drinking much water.

My PCP recommended I see a Rheumatologist who did blood tests and ordered an MRI. It was my understanding that those tests ruled out many autoimmune diseases and stroke or other brain related issues.

Then in early March I was walking slightly up hill when for the first time I experienced a very strange feeling of not being able to walk normally. This strange feeling while walking was not consistent and I associated it with a new pair of sneakers I had started wearing often. I stopped wearing those sneakers but the difficulty walking continued to occur sporadically.

At this point my PCP recommended I see a Neuro. In my first Neuro appt. I was feeling fine and told him that I was not experiencing the walking issues that day. I passed all the 1st exam tests but scheduled a follow up EMG.

In the weeks leading up to the EMG my stress level was through the roof b/c after not working for much of the pandemic my industry opened up fully and I was double and triple booking jobs. I had experienced 2 specific walking episodes that left me really scared b/c it was so difficult to walk on those occasions and by forcing myself to walk I had completely over worked my leg muscles.

I have attached a copy of my EMG from May 4th and am waiting for appointments with other Neuro's who specialize in this area. I am hoping for the best but have been preparing for the worst. My symptoms have progressed and I have difficulty walking all of the time except in the early AM for the first hour or so. I have been getting a lot of hand cramping and have fasciculations all over my body. I believe the fascs are all day everyday but I only really notice them when I sit down to relax in the early evening. I have started paying a lot of attention to walking b/c if/when I am careless I stumble b/c my foot is dropping. Sometimes I can walk on my toes and other times I cannot. I have trouble balancing on one foot (either one).

I left out that I have also in the past month seen a ortho back surgeon who ordered and reviewed MRI's of my entire spine. Though my back has several issues, the ortho does not see any evidence that my peripheral nerves are impacted and my difficulty walking is not related to the condition of my spine.

All thoughts welcome and thank you in advance to taking the time to read my disjointed story.

Sincerely,
JT
 

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  • Jordan_EMG_5-4-21.pdf
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affected

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lala land
Not sure if you read this one, it should show you clearly that what you describe doesn't match anything like ALS. Give it a really good read through.


Your EMG gives a conclusion that says it indicates a neuropathy. This is what you can discuss at your next appointment, and remember to ask your doctor what they think is going on, not try to steer the conversation towards ALS. I hope you get some relief and treatment soon, it is likely to be something very treatable.
 

jordan1ad

New member
Joined
May 18, 2021
Messages
3
Reason
PALS
Diagnosis
05/2021
Country
US
State
NY
City
NY
Thank you for taking the time to look at my EMG and respond. I read both READ THIS posts as well as other stories before I posted. ALS came up with my Neuro after he administered my first EMG. He mentioned this among other things when I asked what the test results could mean. Your words will help me remain positive between now and my next appt. I also want to say that this forum seems incredibly well organized/moderated and I think it is so generous that you all offer your experience and expertise to people like me.
 

jordan1ad

New member
Joined
May 18, 2021
Messages
3
Reason
PALS
Diagnosis
05/2021
Country
US
State
NY
City
NY
Hello affected,
I was diagnosed with PMA followed by a 2nd opinion of ALS with what I believe to be top Neuro's in NY. You appear to be a very knowledgeable and senior member of this forum and though I am relatively savvy with technology I am quite ignorant and have avoided social media and online groups for many many years. Is it possible to communicate directly on this site?
 

lgelb

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You will not have PM privileges yet but can ask questions here. I am not moving your post to Newly Diagnosed as yet because the sequence of events since you posted in June is not clear. Can you tell us more about who diagnosed you and how? Did you have another EMG?

Best,
Laurie
 

affected

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lala land
Hi Jordan. There really isn't anything I could say to you privately that can't be said here on your own thread here, so as Laurie suggests, ask anything here, but you really would be better leaving here and asking your doctor. I wish you well.
 
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