1.5 months of symptoms that are not getting better

Status
Not open for further replies.

Src

New member
Joined
Feb 6, 2021
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hello. First of all, if you take the time out of your day to read this, thank you. I have been to my GP, as well as a neurologist and am basically in limbo waiting for an EMG. This is extremely hard having symptoms every single day and trying not to think the worst.
I am 28 yo female. 1.5 months ago I had some twitching in the left side of my face. I have a periacular sinus in my ear so I kind of assumed they may be messing with some facial nerves. No big deal.

Next couple days I get woken up by this pretty intense shooting pain in my left arm, and then woken up the next night with my arm going numb multiple times. 2 days was still there so I googled and either MS or ALS pops up. Absolute panic ensued.

My left hand and left calf started to feel funny. I can't explain it, but my left hand/arm felt very fatigues and not dexterous, and my freaking calf has this strange ticklish and weak feeling when I would stand/walk/press my toes into the floor.
I saw my GP about 3 weeks in. At this point I started getting intense vibration feeling in my feet with exercise and tingling on the left outside of my food when I showered in hot water. Mainly my calf was bothering me and still felt the strange weak/ticklish sensation when being used. She did a general strength test which she said was ok but sent me to neuro. Saw the neuro (meanwhile all these things are still happening) and he said he didn't think it was MS or ALS, but thought something was going on.

About 4 weeks in....I start twitching. Most inmy left calf (about 80% of the time) however in other body parts as well. My anxiety at this time was excruciatingly high and I actually was called in hydroxyzine by my GP at her visit. I wasn't eating, I wasn't sleeping.
So as of now, my left leg has started shaking very bad when I put weight on it and does try to give out. Walking has become more difficult and feels awkward, and like if I don't think about walking my leg will give. The whole shaking uncontrollably just in that left leg thing scares the absolute hell out of me. That and the twitching. I am still twitching.

The twitching really only happens when I am at rest and immediately after I stop using the muscle, like stopping walking or sitting/laying down. When I use my legs to turn in bed, the muscle twitches. My arm now on the left side has also started twitching after use and at rest. I do get twitching in other places of my body, but as I said, the majority are in my calf/leg and arm. Starting to get more in the right leg now too.

I think the arm weakness waxes and wanes, but the leg thing has gotten worse. At least before it just felt funny and I could walk ok. Now my calf gets tight once I start walking and my knee feels like it's giving out.

I am extremely scared. I have a 1 year old daughter. Everytime I look at her or my Husband I just cry because I think something is going on..

I keep running through all the possible scenarios in my head of what it could be, but the twitching and the leg giving out and strange feeling I my calf muscle, the tensing in the calf when walking....I feel like I am running out of plausible options.

I was thinking MS at first, but the twitching doesn't match. Maybe autoimmune but it's only affecting my left leg. Pinched nerve is possible, but I haven't had an injury in the past 2 months.

I am just so completely lost. My husband is tired of hearing about it. And I feel like I can't make any life plans because it'll be ALS and then what is the point?

I am supposed to have bloods done for autoimmune issues before the EMG on March 5th. I seriously feel like I won't make it that long.

Any advice on what this sounds like would be appreciated. I am baeely holding on by a thread at this point. Every time I feel my calf twitch or my leg start shaking I spiral into anxiety and depression.
 
Last edited by a moderator:

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,269
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
There are many possibilities, generally very treatable, but I don't see ALS as one of them. As you acknowledge, and this is very common, your anxiety skyrocketed and your perceived weakness, tightness, etc. increased correspondingly. So the tests and further exams will help separate clinical issues from perceived issues, which is very important, and provide additional objective data. Trust me, you will make it to March 5, and what those days feel like, believe it or not, is within your control to a significant extent.

I would ask about screening for RLS/PLMD, which entail symptoms that abate with movement. Hydration, nutrition, sleep and stress can all play major roles here. Also, it sounds trite but left hand/leg always leads me to question sleeping position and the support of your mattress and pillow, even how you are holding your toddler.

Hydroxyzine is an old, dangerous drug to use for anxiety or sleep. I would ask for something safer or try to focus on the root rather than the stem. I am sure spending time with your family and other activities are a comfort to you, so I would fill your days accordingly. Your daughter in particular will only benefit.

Best,
Laurie
 

Src

New member
Joined
Feb 6, 2021
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hello Laurie.
Thank you for your reply. It really helps knowing there is someone else out there that I can talk to about this, even if momentarily.
I have thought about RLS and PLMD, however I don't have the ticklish/weak (whatever it is) feeling at rest. I have it when I am using the muscle. It is my calf muscle. If I press my toes into the ground, like walking on your toes or squashing a bug for example, I get the sensation.
And trust me, I have been telling myself for weeks that this is probably all anxiety (and I pray it is), however the trouble walking and the intense shaking that happens in my left leg which causes it to buckle has me very skeptical that it is anxiety. Especially since the anxiousness has greatly decreased since the start if all this. I know the mind is powerful. I just question exactly how powerful. Another thing, is I would think if it were anxiety, these feelings and the shaking would be full body, or both legs/arms etc. Because it's just the left leg question the psychosomatic thing.
Is there anything other than als that causes weakness in one limb/ muscle or one side of the body?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,269
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
There are some different riffs on RLS/PLMD/related variants. Some occur when you are intending to use the muscle, some are triggered by lying down, some are triggered overall just by fatigue. It is also less well known that arms can be involved as well.

Anxiety does not only create full-body twitching or whatever -- you need only to read more posts here to realize that.

Um, yes, hundreds of things show up unilaterally. ALS is one of the rarest. Positioning at work, leisure and sleep is often a factor in at least making it better or worse.
 
Status
Not open for further replies.
Top