Living with Palatal Myoclonus and PAIN!
Posted , 2 users are following.
Four years now i suffer from palatal myoclonus disorder. As some of you may know, this is a very disturbing disorder, feeling an ear click sound.
But the problems continued:
Last year, suddenly i felt a strange feeling on frontal side of my brain and after that i had a big number of severe symptoms: jelly arms and legs, Anal Mucus Discharge, exhaustion, dizziness and a type of pain on my brain, arms and legs, like a huge internal tremor. I was struggling even to stay on my feet and talk too! Also, i have 3 like panic attack episodes. I am not sure if they were true panic attack episodes, or something else. I had some severe tantrums before all these, i don't know if they are the cause.
I got antidepressant medication for 3 months and slowly SOME of the symptoms were mutated. No jelly arms and legs, less exhaustion and no Anal Mucus Discharge. But still i have severe headaches, myoclonic spasms in my eyelids and most importantly, this unknown pain in my body. I can't define if it is neurological or something else. I feel it like a permanent headache on my head and it goes until on my legs, especially my knees. It's difficult for me to work, as i am not myself anymore. Everything seems to be harder than ever. Palatal Myoclonus is a toy compared with the rest of symptoms.
MRI was good, blood test also good except for high holysterine and a fairly bad auto immune ratio, i don't remember it. My doctor warned me for auto immune disorder at future.
What i finally have? Could Palatal Myoclonus cause all these symptoms? Should i visit a rheumatologist?
0 likes, 3 replies
ally62362 nick19250
Posted
Hello,
Bless you it sounds like you have had a tough time of it. I have spasms all over almost 100 times a day. My neurologist calls it Myokymia which I think is just a fancy word for "Muscles that like to twitch a lot" and although there are worser things out there it really grinds you down when your muscles wont chill out. Its possible your symptoms are Neurological but please try not to worry too much and stay calm. I went through a lot of testing and they found a brain lesion but Im still up and running and weirdly they think the lesion has nothing to do with the twitching! what Im trying to say is some of your symptoms may not all be connected, I recommend writing a diary of what your going through so you have a logged history to take with you if you see someone.
Sorry Im not very helpful, hope it all works out well for you x
nick19250 ally62362
Posted
Thank you so much for your reply. That's the best thing i am searching. To interact with other patients and doctors (hopefully) to express better the situation. WIth this way, i will understand it much better. As i mentioned above, the most symptoms have already mutated. But, the bad thing is that i have that ''pressure'' in my head and this mysterious feeling in my body which drops my life to B quality level. Especially i feel ''movements'' inside my head, which i believe that PM (Palatal Myoclonus) may be involved. All this feeling makes me doing my everyday activities with much more difficulty than usual.
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I try to have positive thinking. I feel mentally strong and i want to fight. I can say that i achieved to recover a 90% of the negative symptoms i had last summer. I just pray to the God to stop having the rest of the symptoms i have already described above. I don't want to live like having a ''bubble'' in my head. That's how i feel it. Keep making questions to me please, it helps me to understand it better.
ally62362 nick19250
Posted
its great that your approaching it with a strong mindset. It sucks especially when your in pain and your body isnt playing ball! For me it all started as a eye twitch, then my face and arms (basically all over, thats stayed which is well annoying and weird!) then I tried talking to my manager about work one day and out came complete rubbish. I got rushed for a MRI and it went from there. My mum has MS so as soon as they found a lesion I figured Id drawn a auto immune short straw but hey oh no MS (or atleast yet but I'l deal with it if and or when). Id talk to a doctor about a referral with a Neurologist as your experiencing head pain and pressure. You have so many nerves that run all along your neck and face it could be something nerve-like acting up! Has your Doc spoke to you about further testing? I hope your having a good day keep your chin up lovely