Hi, I'm currently seeing neurologist and have been getting symptoms for about a year. Still waiting on a diagnosis, nerve conduction test, but am terrified. I started off feeling light headed and had numb toes. It turned into rippling in my feet. Which has now spread to my legs. Both my legs are weak now. Especially my right one, which I get occasional twitches in. I'm not coping, I'm 33 and have a three year old. Who I don't want to leave. My poor grandmother died of this awful disease and I'm so scared. What were your journeys like? How do you cope?
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Hi Sars, sorry to hear you are struggling with your health and going through the diagnosis process. The nerve conduction test is generally very helpful along with other scans/tests to ruling other possibilities in or out.
My dad has bulbar onset so things were quite different for him, after a year of speech and swallow issues that were attributed to a mini stroke he was finally diagnosed and it was a huge shock. The initial stages were the worst so far as it felt devastating.
However, he is still here and he's managing and managing to be positive. It has had a massive impact in that he has now retired and can no longer manage his sports due to his breathing but he is lucky to still be mobile around the house/garden/short distances. We've recieved support from a fantastic community team.
I appreciate your circumstances are very different to my Dad's. I hope the tests come through soon and you recieve the best outcome possible. In the meantime my advice would be to try to take it day by day and live life as fully as you can.
Take care
Claire -
Thank you Claire. I really hope it is something else. It's just so hard when the symptoms are there all the time. And the waiting is so hard, but equally I don't want them to tell me anything really bad. And this past week, with worsening symptoms I have just let it take over my emotions. My partner keeps telling me to calm down and that there's so many other things it could be. Maybe I am just thinking the worst.Comment
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Sars sorry you are going through the anxious test phase. Do you know when your emg & neurologist appointments are?
Whilst you are waiting please contact your g.p. anti anxiety medication or anti depressant may help.
We are all very different in our progression so thats not really going to help you. Have you had the Mri re ruling out MS. I never once had light headed news.
Diagnosed May 2021 bulbar onset als.Comment
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Sars also did they discuss gene testing re your grandmaDiagnosed May 2021 bulbar onset als.Comment
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shelly21 My emg test is Tuesday. Don't know when I'll be seeing neurologist again yet? I had an mri of my brain and the neurologist believes it isn't ms. Not discussed gene testing. I have been to the gp and they have given me propranolol. Not that it's doing anything for me. My anxiety is really bad right now. I feel like no one can help me.
it's like every time I try and be positive my legs won't allow it. 😒Comment
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