31M - Health Anxiety on ALS

Status
Not open for further replies.

anxi_12

New member
Joined
Nov 18, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
TR
Hello everyone,

I have been having fasciculations on and off for 4 months. Some days more some days kese. I have had neurologist appointments 4 times in 2 week with 2 different neurologists. The first one made clinical exams and blood test. Prescribed me with Magnesium and Folic Acid. I wanted a second opinion and went to an alternative, in the first appointment, last week, she has just done clinical exams, said nerves are perfect and wanted me to use Alprazolam. After just a day, I have visited her again with weak knee on left leg and burning tongue tip, she told me that we can do an EMG/NCS and MRI if I want. I wanted to. EMG was clean for both sides, both upper limbs and lower limbs. MRI was clean as well.

After that I have started having issue with my tongue, especially at night, while sleeping I have some tongue paralysis. I was not able to move my tongue once for couple of seconds. I have also been clenching jaws, biting tongue etc. I am also having some dysphagia (I have had it before several times due to reflux but still worried).

I have been constantly checking my tongue, hands, feet for atrophies. I see some dents and lines in skin. I take pictures and try to compare my old pictures. I realize how I do not have pictures of my hands and tongue (well…) and how I did not pay attention to my body before.

Yesterday I had zero tongue problem. But today I have had a very bad tongue (also some dysphagia and speech problem) in the morning and some weakness on left leg. I have registered an online Meeting with my neurologist. I told her about these tongue symptopms. She said we have done the tests in body and clinical exams. She said my speech is normal and that I am not thinking clearly and no need further confirmation. She advised me to see a psychiatrist and do not come back to neurology clinic again.

Psychiatrist prescribed me with SSRI and Hydroxyzine due to health anxiety.

After reading things about not having the right EMG (not on bulbar only in limbs), doing EMG early etc. I am still having second thoughts and get triggered by finding some weird thing on my foot (I think I am seeing an atrophy in my left foot…).

I wanted to share my story with you and I would like to hear if someone had good results with some anti-depressants after anxiety and doing fine right now. Maybe it would be better if I have never read these stories.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
7,476
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi there-

I am sorry you are struggling with anxiety about ALS. Your absolute best place to find support for this and information about what works to reduce fears of ALS is to stay away from ALS focused sites and look for online communities of people who have similar experiences. Places like MuscleTwitch on reddit, the NoMorePanic forum or the BFS group on Face Book.

This forum really is for people who have been affected by the diagnosis of ALS and exists to provide support and tools for living with the disease itself. We simply don't have the bandwidth to provide support for those who have anxiety about ALS but don't have the symptoms or diagnosis.

Please take care of yourself by using one of the above recommended places and don't feed your fears by remaining here.

All the best
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,937
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so sorry for all you are going through.
Is your psychiatrist also doing therapy with you?
You can get over this, truly, but it will take some time, meds and work.

As noted, people who do not have ALS are not able to answer you here - there are forums and groups however that could help you.
 

anxi_12

New member
Joined
Nov 18, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
TR
Thanks for the responses however I am having some issues right now.

Yesterday night was terrible, I had trouble swallowing and trouble breathing. I could not get my left arm up and my left leg felt very weak. I had chewing and swallowing problem.

This morning I took SSRI and everything was fine. I could even run and carry heavy things with my left arm.

However after dinner, I started to feel diaphragm spasms and very uncomfortable right now.

Could it be possible to have bulbar on set and progress rapidly in one-two week to the point I cannot swallow and it is very hard to breathe ? Also is it possible that some symptoms come and go ?

By the way, I have no speech problem or excessive saliva but dry mouth.

Thanks in advance.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,864
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
No and no. ALS is not at all like you describe. Please follow the above advice and work with your doctors.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,937
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Really classic anxiety response that you are describing.
Always seek help from your doctor.
 
Status
Not open for further replies.
Top