Been looking for answers for over a year ... Possible asks?

[Wilson13]

Hello!
I started my journey about a year ago. On a long drive I do frequently , average 6 hour drive, I noticed my right leg started to loose sensation and it was hard for me to continue driving. I chalked it up to how I was sitting an nothing more. Then that weakness and loss of senation would appear more frequently. I went to my gp fearing a blood clot. I was cleared of that.

I then had the symptoms more frequent and then major weakness in my right arm and hand. I was having issues with my right eye and have since been diagnosed with optic neuritis. I was referred to a neurologist and had an MRI for possible stroke and ms. Cleared of both.

Reumatory Dr. Said no to RA. I was then diagnosed with Fibro which is a secondary condition.

Was cleared of lupus. All kinds of blood test and all that came back was super low vitamin D. They put me on a high 8 week therapy and it back to normal now.

I have been tested for Lyme diseases. Initial test came back positive, confirmation test all negative. She also mentioned I had elevated inflammatory markers. I have requested to be tested for co infections.

My right hand is extremely weak and it's hard to drive with my leg longer then 20 mins. I do have twitches all over and some mild face numbing on my right side. Using the computer is ok only for short amounts of time. There is also a burning sentstion in my muscles. Pins and needles. I have read the stickies many times. I have researched my brains out and had time away. I am terrified. I am so lost. Looking for advice on what to do next and if this might be ALS? possible PLS ?

I appreciate any help.

Thank you,
Brandi

 

[Wilson13]

I failed to included that I have had a NCS and told the nerves were good. I know that is not an EMG which is the golden standard. Does the NCS results stand any ground?

 

[Atsugi]

Hi Brandi,

First, I think you've already read that the sensory stuff like muscles burning and pins and needles, etc. point AWAY from ALS. You also mentioned some things that have nothing to do with ALS, like your eye. Also, don't sweat the twitches. Lots of conditions have twitches. Even healthy people twitch.

The NCS looks for a lot of things, but it isn't really a test for ALS. The EMG, NCS, and all the other tests are meant to provide clues to the doctor, to be put together into a big picture. There is no "test for ALS." All other diseases have to be ruled out first. THE NCS looks for other diseases, as does an MRI and the blood tests. ALS is rare enough that the doctor will often do an EMG near the end of the process.

You said that it was hard to drive 20 minutes, as if it were easy to drive the first 2 minutes. That doesn't sound very ALS-like.

In ALS, the muscle doesn't get 'tired' over time, really, it just doesn't go at all, right from the get-go. Now, there are lots of muscles in the leg and foot, so I really don't know exactly what you're describing.

Is it possible ALS? That's a tricky phrase, because a doctor might say, "Well, it's possibly ALS" but that doesn't mean nearly as much as if she says "this meets the El Escorial Criteria of possible ALS" which is a bad thing.

How old are you? ALS is super rare in your 20s.

So continue with your GP medical doctor. It sounds like she's doing all the right things. But don't get ahead of yourself. When I read your post, it didn't make me want to say a rosary for you.

 

[Wilson13]

Thank you for your reply Mike!

I underfunded the sensory stuff points away from ALS. It's other things that bring me back. My right arm is heavy and weak, No clinical weakness. My right leg, is on a constant phase of fatigue. If I were to climb a flight of stairs lets say, my right lef feels like I climbed 100 flights. Driving is just when I noticed it fatiguing and going numb. Along with the optic neuritis and sudden on set that is what called for the MRI due to a possible stroke. I am just lost. Everything comes back negative and I know ALS is a diagonsis based on eliminating and present issues. I can hardly hold a steering wheel with my right hand/arm. the ability is still there but progressively getting harder.

I am 32 years old.

 

[Wilson13]

Sorry for the Typos.

 

[Nikki J]

It is a half truth that ALS is a diagnosis made by eliminating other things. That is only true IF you have specific findings on both your clinical exam and if that indicates isssues consistent with ALS an EMG. If both those things look like ALS THEN it is necessary to exclude everything else

 

[Wilson13]

Thank you for your reply Nikki.
I have a follow up this week with the Reumitory dr. And follow MRI in May. Just looking for possibilities in the mean time. The only thing I have to go off is my NCS which I understand doesn't necessarily rule out much in the way of ALS all of your insite is genuinely appreciated and I thank you.

 

[lgelb]

Was myasthenia gravis ruled out?

 

[Wilson13]

aife lb, thank you for your reply. Yes that was something I was tested for.

 

[Wilson13]

Sorry my phone auto corrected your Name, Igelb.