Freaked out about my symptoms

WorriedinIL

New member
Joined
May 25, 2019
Messages
5
Reason
Other
Diagnosis
00/0000
Country
US
State
IL
Hi. I’m a 23 year old female that has been having some troubling symptoms for about 2 months. It all started April 1st with burning in my saliva glands, jaw pain, white tongue, and dry mouth. I figured it was a virus and wrote it off. However, it lasted for weeks and I started to develop some neurological symptoms. I first noticed a huge increase in floaters, a feeling as if my tongue was swollen. No issues with speech. Then there was numbness and tingling that gave way to what I have now which is widespread diffuse Fasicualtions. They started in my calf with an extreme calf cramp which then spread to my thigh and now it’s my whole body. Even my corner of my lip trembles when I open my mouth. However, the most troubling symptom to me is the fact that my pinky on my left hand feels harder to bend. There is pretty extreme pain there when I bend and flex it and at this point seems pretty impossible to bend without extreme pain. It has started having a tremor as well. I’ve also noticed popping of my joints, as well as this feeling in my limbs that feel like RLS but in my arms. I’m dropping things more and notice I’m more clumsy lately as well. I have a near constant 99.5 fever as well as tight muscles in my neck. I’m not sure if this is stress or if I should be legitimately concerned about ALS. I couldn’t get an apt with a neuro til June 24th and that just seems like too long to worry! Thanks in advance for any answers to my worries. I truly appreciate them.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,439
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
I agree with Shiftkicker. See a primary care doctor.
This is most likely viral or possibly autoimmune. I doubt it’s a primary neurologic condition, and ALS would not even be a consideration.
 

WorriedinIL

New member
Joined
May 25, 2019
Messages
5
Reason
Other
Diagnosis
00/0000
Country
US
State
IL
Hey guys,
Just following up. I saw my primary care doctor. She ran some blood work all which has come back normal.

I’m still having some muscle pain and stiffness and my left hand feels stiffer/harder to use everyday. I have some pretty intense tongue fasiculations that look just like the videos of MND. It looks like quivering when I even stick my tongue out the slightest bit.

No trouble speaking except for hoarseness at the end of the day and neck/jaw muscles that get really tight sometimes like someone is pulling on them.

She did a reflex check, and most of them were normal. However, my patellar knee reflexes were off the charts hyper. My knees shot up so high. She told me to follow up with the neurologist just cause she is at a loss for what it could be. I also always kinda of have this strained feeling in my calf. My fingers shake when I use them on my left hand and the other day when I tried to get up, my thigh muscles were uncontrollably shaking. I also notice a breathless feeling sometimes. The main thing however, that is bothering me, is my left arm has this feeling of needing to be tugged on. Almost like a numb feeling, but not. It’s hard to describe but it’s very annoying.

I’m a nurse and I keep noticing it’s harder and harder to open pill containers and such. I am crazy stiff in the morning and my tendon at the back of my neck pops every time I use it to turn my head. I’m still having the dry mouth and the jaw pain, as well as a white tongue.

Did anyone present with symptoms like these at the beginning or am I just being a hypochondriac who has something else going on and immediately jumps to the worst thing?

Thanks so much, and sorry to be a bother.
 
Last edited by a moderator:

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,439
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
The problem is that you have heard of ALS and now you’re hyper-aware of each and every sensation and symptom in your body and how it measures up to what you understand about ALS.

ALS doesn’t cause muscle pain and stiffness, hoarse voice, or tense muscles. Nor would it cause a strained feeling in your calf, morning stiffness, or popping.

You have not described muscle function failure which would be the hallmark of ALS. That would be when something stops working.

So I really don’t see ALS here. Undoubtedly stress and anxiety are intensifying all your symptoms. Whether or not there is something underlying the symptoms will reveal itself in time. Meanwhile keep working with your doctor.
 

WorriedinIL

New member
Joined
May 25, 2019
Messages
5
Reason
Other
Diagnosis
00/0000
Country
US
State
IL
Hi Guys,
Sorry to bother again. I’m waiting my neurologist consult next week. I’m having some pretty troubling progression. I’ve found the past few weeks it is harder for me to write and I have to take every fiber of my energy to finish the line I’m writing for work. It looks like chicken scratch by the end. I also can barely hold my phone/a book without my wrist shaking terribly. I’m dropping literally everything, so much so that I have had people at work commenting on it. The tongue twitches are still there and have given way to some trouble swallowing (i.e. gagging on all my pills, coughing after liquids, throwing up meals often from the gagging). I’ve lost so much weight from trying to avoid hard foods. My gums and my jaw are just killing me. Both hands can barely lift shampoo bottles without shaking and dropping them. My primary doc keeps saying probably a post viral thing but how could that be for 3 months? I’m having nerve pain and what feels like joint pain from pushing myself so hard. I’m really afraid that at 24 years old, I can’t even swallow a tiny pill without profusely gagging.
Please please tell me that even with ALS, it wouldn’t progress so fast where in the span of 3 weeks both hands and my mouth are weak? How would this be so quick? I hate waiting for the neurologist. It’s eating me alive and it’s getting harder and harder to hide what’s going on from family, friends, and coworkers. Please help.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,439
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
ALS wouldn’t progress that fast. Please update us after the neuro visit.
 

WorriedinIL

New member
Joined
May 25, 2019
Messages
5
Reason
Other
Diagnosis
00/0000
Country
US
State
IL
Hi all,
Just had my nuero consult. Dr noted brisk reflexes, tremor, "claw like" hand on my left side, and a tongue quiver/tremor rather than tongue fasicualtion. She's running an EMG/ MRI and more blood tests. She's giving me some gabapentin to see if that helps the nerve/pulling feeling I've been feeling. She told me the EMG will tell more in terms of different neuropathies. She also noted that my skin has a "mottled" appearance that can be present in autoimmune conditions even though all my autoimmune panels came back negative. She told me to follow up on 6 to 8 weeks. For some odd reason, she isn't concerned about the gagging when swallowing solids because she said if I can still swallow liquids I'm ok. Possible carpal tunnel, diabetes, post viral syndrome, ms, or pinched nerves. She said she cannot fully rule out ALS/ MND but based on my current symptoms she's not concerned. What do you guys think? Should I relax that she says it's not ALS or wait for the EMG before I think I'm in the clear.
Thanks as always for all the continued support and advice. Me and my family appreciate it very very much.

Erin
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,439
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
I don’t think ALS is a concern at all, but I know you’re not going to let go of it until you get that clean EMG. In the meantime, I wouldn’t lose sleep worrying about ALS.

Not all autoimmune diseases have abnormal blood tests. Your doctor is correct that a mottling pattered on the skin can be seen in some autoimmune conditions. She sounds like a thorough doctor.
 

WorriedinIL

New member
Joined
May 25, 2019
Messages
5
Reason
Other
Diagnosis
00/0000
Country
US
State
IL
Update:
Hey guys,
Just giving you an update of how things have been. I've seen my neurologist 2 times and she has kinda blown me off, ordering the tests but offering me no help in the meantime while I wait for the EMG (not til September). My symptoms now are:
Left arm fasics
Tight feeling at back of neck and front of neck
Jaw spasms
Tired feeling in tongue as day goes on
Tongue fasics noted by both me and doctor.
Hyper reflexes
Fine tremors in both hands noted by doctor
Tight feeling and twitches left leg
Left hand wasting.
Trouble swallowing (my pills and even liquids)
Coughing and hoarse voice after eating
Floaters
Burning in left ear
Quivering in tongue and corners of mouth
Weak muscles in pinky finger in left hand ( I can only lift it past a certain point) as well as a weak pincer grasp on left hand. My right hand is fairly ok, but it moves slower than it used to.
Muscle aches
Shakey muscles after about 3 hours of being awake.
Popping joints
Mottled skin appearance

I have to wait til September 3rd for any of the tests, and in the span of April to present day, I have this many symptoms.

What I'm asking for now is for advice on how you guys have dealt with the fatigue and the shakeyness/tight muscles and if you have any advice on how to be more functional until September and whether or not you guys have seen anyone progressing this quickly. My family is pretty distressed since I'm so young with having to watch me be so sick. I've sorta just resigned myself to the fact that I may not be who I was before April. I'm just wondering now how to cope with the lack of functionality I'm experiencing now

Thanks.
Love and light,
Erin
 

Bestfriends14

Forum Supporter
Senior member
Joined
May 7, 2017
Messages
659
Reason
CALS
Diagnosis
05/2017
Country
CA
State
Alberta (AB)
ALS does not involve shakiness/tight muscles and fatigue. It involves muscle function failure, which you do not have. Therefore, the folks here are unable to give advice on symptoms that do not align with ALS. No one but you seems to think you have ALS, but that does not seem to reassure you. You've been told several times that nothing you describe is ALS, but you do not want to acknowledge that. Why? My husband would jump for joy if he heard that (of course he can't because he has ALS), but you seem to dismiss that. Perhaps you should explore why instead of looking for a disease you so obviously do not have.

I may sound blunt, but you are wasting your life focusing on a disease you do not have. The time you have spent worrying about this is time you will never get back. I'm not sure what is wrong with you, but it really does not sound at all like ALS. Please, try to be grateful for that. You only live once and it's up to you how you choose to spend your days when you do not have a terminal illness.
 

grounded

Active member
Joined
Sep 25, 2012
Messages
33
Reason
PALS
Diagnosis
12/2011
Country
US
State
PA
You have many symptoms not normally seen with ALS. As others have said, the chances of you having ALS are "slim to none". But, here's my answer to your questions.

Fatigue and the shakeyness/tight muscles are not things I have experienced, so I can't help with these. If by fatigue, you mean that after use you lose the ability to do things (like unable to lift food to your mouth halfway through a meal), a rest period might help. To me, fatigue means feeling tired or worn out - not what I experience.

As for coping with loss of functionality, what are your specific losses? Wear AFOs (ankle foot orthosis) & use a rollator or power wheelchair to compensate for functional issues with legs. Sit only in chairs with arms to help with standing. When eating, sit at a high counter & use that for arm support. Use thick handled utensils for eating & get help with food that needs cut up. Also, drink using straws most of the time. If you can't use buttons, there are tools available to help with that. Also, shoes with Velcro closure - no laces to tie. Bidet helps a lot with toileting. I still swallow OK, but others find that thickeners can help.
 
Top