Terrified 41 year old Mom

[MountainLab19]

Hello all. I know you get a lot of very terrified people here who think they have ALS... I am one of them. If you take the time to read this and offer some support, please know I appreciate it.

In June of this year my left leg started to feel strange. Knee down there was a weak/ heavy feeling. Sometimes it felt like static, sometimes heavy. My doctor ran a B12 test which was normal. I had a back xray to look for anything wrong- normal. This feeling in my left leg continued June -Aug.
In August I worked up the strength to see a neurologist. At this point, I was not sure what I was afraid of, but I was afraid. My clinical exam was clean and my strength tests were normal. I did have bilateral brisk reflexes but he said it was not a concern b/c both sides and I was clearly anxious. He concluded that there was nothing serious going on but maybe a pinched nerve around my knee.

That appointment really set my mind at ease and the next month or so my symptoms bothered me less and less. The remainder of Aug and September the symptoms were 90% gone occasionally returned here and there but I mostly ignored. I worked around the house without issue.

October - now my symptoms are back. My left leg feels totally week. My knee clicks, my muscles ache, I twitch all over.... I keep thinking my leg will "give out". Some days are worse than others. My right left has started to feel similar. I'm not also getting cramps in foot, thigh and calf. My walking has significantly slowed down.

My right hand feels week and dumb, fingers are painful some days and I've had one knuckle kind of lock up when I was using the phone.

I'm not going to lie-- google gave me an instant death sentence when I put in my symptoms. I'm scared to death and I'm not sure what direction to go in. I want to get an EMG but I also don't want to b/c I'm scared of errors or actually knowing. I tried to enjoy my holiday but there is this looming darkness that I am going to leave my children.

"Legs feel weak" in google tells me ALS, my anxious mind tells me ALS..... Where do I go from here?

Panicked and cannot think clearly...

 

[ShiftKicker]

Hi there-

It sounds like you've been afraid of having ALS for over 5 years, based on a previous thread. Your reported symptoms do not fit in with the pattern of ALS, especially as you report things improve or are intermittent- read here for more info. What it might be would be something to work out with your doctors. Physiotherapy may be helpful for you of there are structural issues causing muscle imbalance/pinched nerves. If you are afraid of seeing medical professionals due to "what ifs", you may also benefit from seeing someone who can help you with anxiety reducing tools.

Please take care

 

[MountainLab19]

Thank you for taking time to reply.
I will admit I have pretty bad health anxiety and my post 5 years ago proves so.
However my symptoms are not in my head. Yesterday at the grocery store I had stabbing knee pain that almost made my knee buckle several times. I’m at a loss as to what’s going on. Of course in my mind the knee is now hurting bc it’s carrying wasted muscles
I could go demand and EMG but I don’t know that that is the correct step. I also am very afraid of a false positive or “dirty” reading that wreaks havoc on my life and ends up being fine. My mental health is very fragile right now and I’m a bit hopeless for a future. Statistically I guess my chance is around .003% but it feels incredibly real.
Thank you for taking your time.

 

[ShiftKicker]

Hello-

Nowhere did I say it was all in your head. I pointed out that what you report does not fit the pattern of ALS. Again, you state you are afraid of "what ifs", so are unwilling to discuss next steps with your doctor. There really is not much we can do for you here except provide you with the recommendation to seek help from your doctor for your non-ALS symptoms and also for your anxiety.

Take care