denizyildizi
New member
- Joined
- Dec 26, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- TR
Hello, merry christmas and happy new year to all. To start, I thank you for your precious helps to patients and suspicious cases. You are such lovely, super helpful people and I wish you the best and all the heal. Ive read the read caption and nearly all threads, just would like to consult your precious experience. I am 39 year-old lady from Turkey. English is not my mother tongue, sorry if I do mistakes. I have health anxiety especally for the last 5 years, after my daughter got sick with an undiagnosed illnesss. She is well now but unfortunately I cannot get over totally. I am getting therapy and I tried many nutrion plans but none of them worked for a full recovery.
My complaints started with tingling/numbness in my hands 5 years ago and spreaded to my arms and legs as if ants were running on them. My legs felt so week and my hands were felt so incompenent I was suspicious if I could use them properly. Then aches and twicthes in localized areas had started. My muscles were so tired as if I’d run miles miles and done workouts. I went to neuroligist for examination after googling that twitches are ALS and he said it is fibromalgia as there is no clinical weakness or other clinical symtoms. He did NCV he said everyting was clear and suggested an antidepression which I rejected due to lactation. These sypmtoms come and go over years, the locations changed, tremors, dizzeness are added. But it was like flare ups and then complete recovery. I know tingling etc cannot be linked to ALS, just to give you an idea about my most probably somatic symptoms.
Then last year, ı had terrible headaches with all the symptoms I could barely got out of bed. I wnet to another neurologist and she asked for Brain MR, forward me to Rhemotologist ( I also have Raynaud) and did another NCV. Nothing clinical can be found ( suspected illness were MSC etc)
This year around August, cramps, twitches and and perceived weakness started in my right calf. I did self tests such as climbing steps, heel walk, tip toe, and could do everything but right was considerably weak. Of course my health anxiety came to scene and I was freaked out. I waited for 2 weeks and book an appoinment at Dec 6th with may latest neurologist. By that time I’ve read everything about ALS including your forum and a few days before my visit, I realized a slight slurring in my tongue. Similar to other text I found difficult to pronounce some R’s, T’s and my voice is like I am whistling and lisping. The doctor did a EMG /NCV this time and has not found any fndings in my limbs, but she refused to do EMG to my bulbar area telling she is not expert. She told me that if I had issues in my bulbar area, she could find some other finding in my body as well ( which I cannot be sure from people’s comment here) she prescribed me an antidepressant again but because of my anxiety I could not start till a few days ago. However in thsi nearly 3 weeks process I think the slurring and lisping are getting worse and I started to watch my tongue in mirros and found many movements but cannot be sure if they are fasculations.
I am asking my husband if he could detect anything he says no but I barely talk normal now and it is like I am even lispering and slurring in my thoughts. My question to you is that for bulbar, can it be only detected with EMG and no other exam results and shall I for a second opinion to another neuro? By the way it is very difficult to find a ALS expert here.
My complaints started with tingling/numbness in my hands 5 years ago and spreaded to my arms and legs as if ants were running on them. My legs felt so week and my hands were felt so incompenent I was suspicious if I could use them properly. Then aches and twicthes in localized areas had started. My muscles were so tired as if I’d run miles miles and done workouts. I went to neuroligist for examination after googling that twitches are ALS and he said it is fibromalgia as there is no clinical weakness or other clinical symtoms. He did NCV he said everyting was clear and suggested an antidepression which I rejected due to lactation. These sypmtoms come and go over years, the locations changed, tremors, dizzeness are added. But it was like flare ups and then complete recovery. I know tingling etc cannot be linked to ALS, just to give you an idea about my most probably somatic symptoms.
Then last year, ı had terrible headaches with all the symptoms I could barely got out of bed. I wnet to another neurologist and she asked for Brain MR, forward me to Rhemotologist ( I also have Raynaud) and did another NCV. Nothing clinical can be found ( suspected illness were MSC etc)
This year around August, cramps, twitches and and perceived weakness started in my right calf. I did self tests such as climbing steps, heel walk, tip toe, and could do everything but right was considerably weak. Of course my health anxiety came to scene and I was freaked out. I waited for 2 weeks and book an appoinment at Dec 6th with may latest neurologist. By that time I’ve read everything about ALS including your forum and a few days before my visit, I realized a slight slurring in my tongue. Similar to other text I found difficult to pronounce some R’s, T’s and my voice is like I am whistling and lisping. The doctor did a EMG /NCV this time and has not found any fndings in my limbs, but she refused to do EMG to my bulbar area telling she is not expert. She told me that if I had issues in my bulbar area, she could find some other finding in my body as well ( which I cannot be sure from people’s comment here) she prescribed me an antidepressant again but because of my anxiety I could not start till a few days ago. However in thsi nearly 3 weeks process I think the slurring and lisping are getting worse and I started to watch my tongue in mirros and found many movements but cannot be sure if they are fasculations.
I am asking my husband if he could detect anything he says no but I barely talk normal now and it is like I am even lispering and slurring in my thoughts. My question to you is that for bulbar, can it be only detected with EMG and no other exam results and shall I for a second opinion to another neuro? By the way it is very difficult to find a ALS expert here.
