Help. Symptoms are terrifying me. 31 y.o. make.

[JDZX3]

3 weeks ago while on vacation I develop tingling on outside of left foot and hand.

Week 2 That continued and turned into pain in left arm and cramping along inside and outside of elbow into hand ( ulnar nerve ?). This limited mobility in my hand and cramped my thumb, pinky and ring finger. Pain in fingers and arm. Limited flexabity.

Week 3 Moved to right arm and hand. Pain in left subsided. Pain in right hand subsided after 3 days but Right shoulder 'tight/burning' like I exhausted it in a work out.

I also began having twitchs, not constant but all over body, bilaterally. Twitch in calf, buttock, shoulder, feet, forearm, just quick brief twitch then somewhere else. Cramp in arches of foot.

Also, left foot gets warm like a heat flash.

MR was clean, two small white spots that were there in 2014.

FREAKING. Can't sleep. Appointment is not till next week. Any thoughts?

 

[GregK]

If you read the Pinned Post titled Read Before Posting, you'll see that all this sensory stuff has little to do with ALS.

ALS is a disease of the Motor Neurons and not Sensory ones.

Go give that post a read now, plz.

 

[JDZX3]

Tongue and Body Fascillations

Hi. I began having facillations all over my body (legs, feet, shoulder, buttocks, stomach, chest, neck) for the past 5 weeks. Additionally occasional twitches in my face (chin, eye area). I went to Neuro for initial screening/strength test, and I passed Babinski, Hoffman and clean MR of Head and Cervical Spine. Clean Bloodwork to date. Doctor told me I do not have ALS but he want's to do NCV/EMG.

Since my last appointment, I noticed that I have having fascialltions of my tongue. Where at rest when I look into my mouth, there are twitches randomly occcuring all over. When I stick out my tounge I can't keep it still and looks like the whole thing is twitching everywhere. Can't get appointment for 2 weeks, and my NCV/EMG is not for 3 weeks.I am FREAKING out, no sleep, etc.

I have been told that typically ALS doesn't start with fascillations/twitching all over. Is that true? Struggling to wait for EMG. Tonge really put me over the edge.

 

[ShiftKicker]

Mod note- merged threads. Please continue posting on your original thread. It helps members to see your entire posting history.

 

[JDZX3]

Thanks you for merging. Week 6 of symptoms since my original post. Primary put me on Zoloft to deal with the anxiety as I wait for the additional testing. Any response to my last post would be appreciated.

Thank you to everyone who take the time to reply to not only me but others.

Jason

 

[lgelb]

Re: Tongue and Body Fascillations

There is very little to speculate about in the coming three weeks, Jason, so I'd try to live your life as best you can. As we have said, it is very unlikely that you have motor neuron disease.

Best,
Laurie

 

[JDZX3]

Thank you.

Went back to the Neuro on Monday, and he was able to see the random fascilations on my tongue. He said it could be NMD. He told me that, yes, I have a tremor in my left hand that he saw during my initial visit, and that the fascialltions could be bengin, caused by anxiety but he could not be sure until he conducted an EMG. The EMG was able to be moved up to next week, so praying its clean.

He did say that it is very rare for NMD to being with sensory symptoms (although not impossible), and that for me to have pain radiating from elbow through fingers, pointed away from NMD. Passed the strength test, babinki, etc. with flying colors again. He also mentioned that it was good that my twitches were so wide spread, all over legs, arms, buttocks, chest, abdomen, in conjunction with tongue because he saw that with BFS/Anxiety vs. localized twitching with atrophy.

I have succumbed to doing a tap test daily which hasn't change, other than giving me sore index fingers. If I run around, or lift the pain gets worse in my left hand which is where all this began. For instance, I ran down a hill in the parking lot the other day and a jolt of pain went down my hand, like I hit my funny bone. If I bump the outside of my hand, I get a similar jolt as well. Is this common?

It is hard to distinguish what it means by weakness, my hand feels weak, and sometimes I think it's spreading to my right hand.

In the past 6 weeks, I have also lost 5-6 lbs, leading me to measure my muscles, legs (ankle, calf, thigh) and arms (wrist, forearm,biceps) and I see no change from a month ago. Hoping that is just stress. I wish they prioritized the EMG to be my first test as that was what I have been most anxious about.

Hearing the confirmation of possible NMD/ALS on Monday, was/is difficult to handle. Trying to live normal life, because if it comes down to it and I do have it. I suppose, I don't want to look back and think I lost two precious months of my life to anxiety.

 

[Atsugi]

Looks like a clear case of "not ALS" to me. See you Monday.

 

[JDZX3]

Clean NCV/EMG of left leg, arm back and neck. Have been told I am a twitcher and that while he would happily continue to test the other side of my body for the money, that he didn't think it was necessary. He has no idea why, and says they generally don't when someone starts twitching. He said the other sensations could have been pinched nerve somewhere, but that as far as his test goes, it was perfect. I was told to stop worrying about ALS. That ALS shouldn't be a part of my thoughts. Tongue twitching and all.

After clean NCV/EMG, Bloodwork, and 2 MRs and MRA, I am going to try to move forward with my life, accept that this is indeed BFS, and to stop looking and waiting for the next twitch. If anything this process has given me new perspective on life, the power of fear/anxiety and the power of the mind. For the past 2 months, this consumed my thoughts and my life.

Thank you to everyone in this forum. To those who are diagnosed or those who have lost someone and take the time out of there day to address the concerns of this site visitors, you are helping thousands with your support and recommendations. This is a horrible disease and I hope they find a treatment and cure soon. I have just donated to the ALS Foundation, which is my only way to say thank you.

 

[ShiftKicker]

Thanks for the very positive report back. I am SO glad for you and wish you the very best.