Read the Sticky, still need opinion

[darthpixels]

Hello all, just a quick history of my symptoms.

About a few months ago, I was at work (used to be a valet) and I noticed on several occasions almost falling because of a weird muscle weakness in my leg. The exact location was not determined. I brushed it off. This happened several times within the next few months.

Then the calf cramps in my leg at night, 3-5 times a week. Severe charlie horse type cramps, waking up limping because my calf muscles were so sore. I also have extremely large (abnormally large) calf muscles. People think it's due to the running from my job, but I've always had large calf muscles. And I drink a gallon of water daily, so it def. was not due to dehydration.

A little way's went by, I noticed lots of twitching, mainly in my upper arms, like a twitching that would not stop, relentless, bothersome, smack your arm type of twitch. I thought nothing of it.

A few months ago, I quit my job because I was just too tired. I started noticing leg weakness increase, along with upper body weakness. No pain, just having a really hard time getting outta bed, pulling myself up, and walking long distances. Just so weak, and when I try to exert myself, I get cramps. It's like, the more I try to utilize my upper body, mainly my right side, I cramp up. I get cramps in places where my body is trying to compensate for my lack of strength in my upper body, if that makes sense.

As of late, I am extremely weak, no pain, just weak. Muscle twitching, often cramping. It's very frustrating. I have recently experience excessive saliva when I talk and the occasional slurred speech which makes me have to slow down and start over with sentences. Also, the drooling is nasty. I'll be sleeping and find a puddle on my hand or on the bed sheets.

Again, no pain except when I get cramps from trying to exert myself. Twitching seems to be spreading tho, which makes me question if its anything ALS related or not.

I have noticed my forearm muscles decrease in size, remarkably smaller than my left arm. Even my fiance noticed.

EMG showed myopathy, non-immflamatory. My neuro is referring me to an ALS/muscle disease specialist, I have an appointment Friday.

Any thoughts?

 

[Nikki J]

An EMG showing changes consistent with noninflammatory myopathy is very different than one consistent with ALS so it would seem like they are leaning in another direction. How did your neuro explain things to you. Did they talk about what they suspected? It sounds like you have been referred appropriately. I know it is hard to wait for an appointment and this appointment will probably bring more recommendstions for tests. Did your original neuro say anything about maybe a muscle biopsy?

 

[darthpixels]

I had the EMG before even seeing the neuro. But the same doctor performing the EMG/Nerve study said he's glad he was the one performing the study because there was nothing he could do. He said he needs to sit down and focus on the findings and quickly referred me to the other specialist. They wouldn't even let me leave the office until I had acquired an appointment. Lol. But he didn't even say anything about my results. They're waiting for the als muscke disease specialist to check em out.

 

[darthpixels]

I had the EMG before even seeing the neuro. But the same doctor performing the EMG/Nerve study said he's glad he was the one performing the study because there was nothing he could do. He said he needs to sit down and focus on the findings and quickly referred me to the other specialist. They wouldn't even let me leave the office until I had acquired an appointment. Lol. But he didn't even say anything about my results. They're waiting for the als muscke disease specialist to check em out. And the results were sent to my via email. I was reading the doctor impressions which also suggested a muscle biopsy.

 

[darthpixels]

Sorry. I couldn't find where to edit.

 

[Nikki J]

Well you will know more after your next appointment. If I were you I would research myopathies in the meantime so you will be able to ask good questions and get the most out of your visit. What you are telling us about the EMG report seems like that is what your original neuro suspects
Good luck and let us know what happens

 

[Clearwater AL]

Just wondering... who referred you to have an EMG before you saw the Neuro? It may help future posters from having to see a Neuro first.

 

[darthpixels]

My hand surgeon. They were actually looking to see how severe my carpal tunnel was. They also found widespread peripheral neuropathy and myopathy.

 

[Clearwater AL]

I agree with Nikki, if you research peripheral neuropathy and myopathy it may ease your mind somewhat concerning ALS. Hope you learn more at your neuromuscular appointment.

 

[darthpixels]

I have done some research on both. The neuropathy in my opinion doesn't fit the bill for those particular symptoms. I know I get some pins and needles and shock like jolts especially at night, but I don't think that would cause the wasting of muscle and weakness, slurred speech, excessive saliva etc. I'm pretty sure the specialist will want to investigate further.

 

[Clearwater AL]

Well... be patient in your diagnostic journey being so much is a mater of exclusion which takes time. As for an example the criteria for a diagnosis of PLS takes 3 to 5 years of neurological exclusion and observation. Again, hope you learn something at your neuromuscular appointment.