cyberchondriac.
12-04-17, 07:36
Sorry if this is very long. It's been a rough journey so far..
It started back in December if last year. I ended up in hospital for 4 days with a numb tongue, drooping eye and mouth and unable to scrunch up my nose or lift one eyebrow. I have ha Bell's palsy before, but they were testing for what else it could be. Lots of blood tests (including vitamins and Lyme) nothing showed up. A MRI showed me to have low lying cerebellar tonsils but not 'impressive enough' to be a chiari malformation. It also showed I've lost a bit of the curve in my neck. Neither of those things need any further tests atm, so pretty irrelevant. I also had/have very low vitD levels.
While I was in hospital a nurse wrongly said to me they were going to check my motor neurons and do a lumbar puncture to test for MND. I now know that's not how you test for it and she shouldn't have said it. (I knew nothing about als at this point)
I was given a neuro exam and the only thing that they mentioned were that my knee reflexes were a little 'brisk' but symmetrical so they weren't concerned. Normal Hoffman and normal babinski.
This led me to google MND and ALS and in turn I developed a severe irrational fear. Then the twitching started. As did the fatigue. Then the health anxiety. It was nearly 3 months of hell. Deep depression.
I went to the drs because I was almost suicidal. I had convinced myself I had als and was going to die. At 23 I should add. Leaving my two very young children all alone in the world. The dr prescribed me Citelopram and literally laughed at my fears, telling me it was a disease for older people and I definitely didn't have it.
I have been on citelopram before for PND, which worked great. Fast forward 3 years and it was like the devils work. I got every single side effect. I was shaky, jittery, sick, insomniac, racing heart.. you name it, I had it.
So I went back (at this point almost suicidal) and the dr changed me to Sertraline (Zoloft) and luckily it's worked great. The dr was so concerned she said that if I had told her I had a suicide plan she would have sectioned me there and then...
Things cooled off and the fear went for a while. It seemed that the only thing that helped was learning all I could about ALS and realising that I didn't have symptoms, and the ones I did have weren't how it presented and just anxiety.
So fast forward to last week and I start getting this weird sensation on my feet. Like a buzzing/vibrating on the soles of my feet. It's not been constant and you can't actually see it. But it's definitely there. For the last few days it's been more constant and also going up my legs. The dr said a possible vit12 defect, so I've started taking supplements. The MRI said no MS, so I'm not worried about that.
But the als fear has come back. I know it doesn't present like this. But what if it does to the minority? A stupid look at the ALS forum (I know!) and saw a few people say they had it sent me back down the rabbit hole...
I don't know what to do. I don't know if it's an anxiety symptom as I've not had this before. I don't know what I was anxious about for it to start if it is anxiety related?! I'm at a loss and can feel the depression slipping back..
If you got this far, thank you!
It started back in December if last year. I ended up in hospital for 4 days with a numb tongue, drooping eye and mouth and unable to scrunch up my nose or lift one eyebrow. I have ha Bell's palsy before, but they were testing for what else it could be. Lots of blood tests (including vitamins and Lyme) nothing showed up. A MRI showed me to have low lying cerebellar tonsils but not 'impressive enough' to be a chiari malformation. It also showed I've lost a bit of the curve in my neck. Neither of those things need any further tests atm, so pretty irrelevant. I also had/have very low vitD levels.
While I was in hospital a nurse wrongly said to me they were going to check my motor neurons and do a lumbar puncture to test for MND. I now know that's not how you test for it and she shouldn't have said it. (I knew nothing about als at this point)
I was given a neuro exam and the only thing that they mentioned were that my knee reflexes were a little 'brisk' but symmetrical so they weren't concerned. Normal Hoffman and normal babinski.
This led me to google MND and ALS and in turn I developed a severe irrational fear. Then the twitching started. As did the fatigue. Then the health anxiety. It was nearly 3 months of hell. Deep depression.
I went to the drs because I was almost suicidal. I had convinced myself I had als and was going to die. At 23 I should add. Leaving my two very young children all alone in the world. The dr prescribed me Citelopram and literally laughed at my fears, telling me it was a disease for older people and I definitely didn't have it.
I have been on citelopram before for PND, which worked great. Fast forward 3 years and it was like the devils work. I got every single side effect. I was shaky, jittery, sick, insomniac, racing heart.. you name it, I had it.
So I went back (at this point almost suicidal) and the dr changed me to Sertraline (Zoloft) and luckily it's worked great. The dr was so concerned she said that if I had told her I had a suicide plan she would have sectioned me there and then...
Things cooled off and the fear went for a while. It seemed that the only thing that helped was learning all I could about ALS and realising that I didn't have symptoms, and the ones I did have weren't how it presented and just anxiety.
So fast forward to last week and I start getting this weird sensation on my feet. Like a buzzing/vibrating on the soles of my feet. It's not been constant and you can't actually see it. But it's definitely there. For the last few days it's been more constant and also going up my legs. The dr said a possible vit12 defect, so I've started taking supplements. The MRI said no MS, so I'm not worried about that.
But the als fear has come back. I know it doesn't present like this. But what if it does to the minority? A stupid look at the ALS forum (I know!) and saw a few people say they had it sent me back down the rabbit hole...
I don't know what to do. I don't know if it's an anxiety symptom as I've not had this before. I don't know what I was anxious about for it to start if it is anxiety related?! I'm at a loss and can feel the depression slipping back..
If you got this far, thank you!