The nightmare is not over!

[Snmartinez87]

Some of you remember me and some of you might not and that's okay. It's been a while!

Anyway, in 2014 I got the all clear "NO ALS" from Dr. Harati (Baylor Medical School). BUT there was Chronic denervation to upper and lower limbs.

Fastward to May 5, 2017 & I'm back to square one. I saw a local neurologist because 1. The knee pain is unbeareable when I exercise 2. My right leg is always sore. The doctor performed the NCV/NCS and he said that I have "slowness" in my right leg as well as my left leg.

•In 2014 the only leg affected was the left leg•

The doctor said that he will refer me to Dr. Harati once again because he said that I need a specialist in motor neuron disorders. He said that he cannot give me a diagnosis or in other words he will NOT give me a diagnosis. Too much liability???

So today the EMG/NCS were dirty or bad. They show signs of slowness aka denervation on both of my legs now. The fasciculations are constant and more pronounced than ever.

Anyway, I'll be on my way to Houston to see Dr. Harati once again! All signs point to bad news but all I can do is wait. I just wanted to share with all of you that I was initially diagnosed with benign fasciculations and chronic denervation of unknown causes.

It seems that not every case is as straightforward as people want to believe. I'm 29 years old & here I am!

Any thoughts & advice is appreciated.

 

[Atsugi]

Let us know every little thing. Good luck.

 

[Nikki J]

I do remember you. Slowness is a very odd way to describe the EMG changes that are ALS. Do you have and can you share the results of your latest EMG?

Please don't jump to conclusions. The last time you were referred on everything turned out ok and what you were told this time is very similar to then. Hoping this goes the same way

Good luck

 

[Snmartinez87]

I get a copy of the results on Wednesday & I have the old results for comparison. I will post a picture of it as soon as I receive them.

Yes, the symptoms are very similar to 2014 except that my right leg is always sore and I can't exercise anymore. The last time I worked out my legs was 3 weeks ago and I was in excruciating pain for 3 days. I felt like I had the flu & the pain kept me up at night.

Also I can only open my mouth wide enough to fit two fingers but I atribute that to my TMJ. I do wonder if it's related to whatever I have because my swallowing and speech have slightly worsened.

The doctor saw my hand twitching

Here's a picture of my hands
& my legs

 

[Snmartinez87]

I think it's important to mention that in 2014 I weighed 172 pounds and right now I'm at 154 pounds without major changes to my diet or lifestyle.

 

[Firefighter58]

Good luck, hope all works out for you.
Al

 

[Snmartinez87]

Good luck, hope all works out for you.
Al

Thank you!
I will keep you all updated. Maybe my story can someone. Prayers for all of you!

And only 4 more days until I find out more

 

[Snmartinez87]

My hands. Right now is smaller and less fleshier

 

[WendyWooG]

Hi
I am sorry you are having so many problems. If the slowness is showing up on the NCS the electrical stimulus part rather than the EMG needle part it could indicate something other than MND as the ncs is usually clean. It would be worthwhile ringing your neurologist and asking for clarification to help ease your worry while you are waiting for your consultant appointment.

When I was going through testing they were hoping to find latency or slowing on the ncs that would indicate MMN rather than MND unfortunately they didn't.
There are still options out there for you particularly with your slow development of symptoms.

I wish you good luck.

Wendy

 

[lgelb]

The EMG would be a lot more helpful than the photos. And there are many causes for atrophy, even progressive, that are benign.

 

[Snmartinez87]

So all signs & tests point to ALS!!!!

 

[Nikki J]

Not so. No acute denervation. Wait for your appointment and don't jump to conclusions

 

[Snmartinez87]

I'm getting ready to go to Houston right now. My appointment is on Thursday at 9am! A day before my 30th birthday!!!!

 

[Nikki J]

Great. Prepare very carefully so you can get all your questions answered. Read the sticky on getting a diagnosis. Make sure you get explanations on chronic denervation and what it could mean in the context of your history, exam and symptoms.

 

[Snmartinez87]

Here are some of the results