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Member
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Join Date: May 2009
Location: Sunny South
Posts: 210
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Member
Join Date: May 2009
Location: Sunny South
Posts: 210
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Hi Nicky!
Thanks so much for sharing Nicky! Is your MG under control now?
Are there different kinds of MND? Cos there seems to be quite a few kinds of MND that the doctors shared with me. Yes, mine had some bulbar region symptoms, but it wasn't very obvious except that my tongue trembled a lot whenever I had to stick it out for the doctors to see. The numbness which I talked about, was more of stiffness in the limbs, i can still feel different temperatures and the needles they poke me with. Its also the twitching of muscles which have developed last month. Initially I didn't really see the twitching, but now I'm seeing it everywhere! Especially on my arms and legs. But then, maybe its cos I'm wearing shorts more often now. Lol.
I have done CTs, lots of bloodtests, which all turned out fine. Even the lumbar puncture was ok. My vitamin B's okay as well, but doctors are suspecting malnutrition, as I keep losing weight. Its weird as I eat a lot~! Am not sure where all the vitamins go to.
Initially the doctors gave me 4 possible diagnosis, which they've narrowed down to MND as my results for all tests were great. The emg was sort of the deciding factor, as my results showed nerve damage in several areas, the neck, fingers, legs. Yes, I'm only 26 this year, and that is why the doctors are hesitating to give the diagnosis. So its another 6mths of monitoring. Somehow am not too worried about MND as well, am sure that it will be alright! It definitely helps to hear all these wonderful testimonies from you. Have only met one ALS patient who was warded in the same ward as me. It helps to know that he knows what I'm feeling.  No matter what the diagnosis is, I'm still gonna live life to the fullest.
Once again, thank you so much Nicky! 
Quote:
Originally Posted by Nicknerd
Hi Connie,
I'm sorry to hear that this is what the doctors think you have. ALS and MND are two different names for the same illness. When I first started my journey with the MG symptoms, it was a concern that it might be ALS as well as my symptoms do not affect my eyes, really, only my 'bulbar' region (throat, tongue, facial muscles). After I had a blood test, CT scan and SFEMG and repetitive stimulation test, the docs. said they were sure it was MG (I also have a thymoma).
I also have a lot of twitching as well, mainly in my fingers. That twitching started before taking mestinon, and isn't part of MG so it's still sorta a mystery. My neuro. thinks that it might be from the thymoma, as they can cause other overlap syndromes.
Have you had a CT scan, just in case? You're also very young to have ALS. Another thing that you mentioned is 'numbness.' That's not a symptom of ALS. It does not cause any loss of sensation or feeling. Have they tested your B12 levels? I know it sounds like not a big deal to have a B12 deficiency, but it can cause loss of feeling and the sensation that you don't have legs. It can be disabling for a while if it's left for too long, but it IS reversible.
You and I are almost the same age. I think that you mentioned that you celebrated your 26th b-day sorta recently. Let's hope that it's not ALS/MND. But if it is, you certainly have a very positive attitude and that'll definately help you. I've met many people with ALS, and many of them live for a very long time. I know a few that have been living with the illness for 26+ years. Also, being diagnosed at a young age is a good sign that you'll live a very long time. As many of those people have said, ALS doesn't have to be fatal; it's all about how you decide to live with the illness.
There are many other illnesses that can cause loss of feeling and muscle weakness. Let's hope that they exhaust all avenues before giving you this diagnosis.
Take comfort that you're not alone, not matter what things turn out to be.
I wish you luck
Nicky |
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