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Sammantha

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Hi everyone, i am a little down today.... I actually had a great time with my husband last night we went out to dinner and there was music playing.... I begged my hubby to dance like always, but this time i was dancing for all of ten minutes when i just couldn't muster the energy no more and had to go home. My boys have been saying for awhile that they cant understand or here what i said but i thought that was because they had selective hearing. When i was at there ballgame saturday my friend kept asking me to repeat what i said, and that is when i asked if my voice was that low... She said no its not that your voice is low its just that when you talk your words all go together, and you sound like you are really tired like a person that is talking but is so tired that they are struggling.. My friend does not know anything about my condition, just that i have been going to the doctors and that i have some muscle wasting. It is moments like these that make me realize that this is progressing its not stopping, what should i do. I already have no income no insurance... My mouth area just started twitching, yes i have had jaw and face cramps with tongue twitching but i have had that for almost two years, now that there is more twitching it seems that it has spead up.. I have to conciously think to close my mouth because it hangs open... My natural facial expression is dopey looking and people think i am sad when i am not.. I wish there was a support group in the area, its really hard going through this alone.... I am so greatful for this website..Sam
 

crystalkk

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Sam,

Are you taking any meds that could be making you slur.....I think you said you are taking a benzio for anxiety did you recently
increase the dosage..... please hang in there.
 

Sammantha

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No, actually i am taking half dosage now as i do not have all the anxiety that entailed to not knowing what is wrong with me and worrying about my job and health insurance. I now know whats wrong and i lost my job and health insurance and ironically enough my anxiety level went way down. My fears came to life so no longer have that fear... i do however still take it because of shakiness.
 

CindyM

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Hi sam- i am sorry htere is no support group nearby. We willhelp in any way we can, though. Did you apply for SSDI? In my state that gets you free health insurance, I believe.
 

crystalkk

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Sam, we are here for you.... you seem like a very strong person......Have you heard anything about your disability yet?
Did you call the mda or alsa in your area and see if there are any support groups in your area?
 

Sammantha

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Thank you

My disability representative called to let me know that they got all the medical records in from the doctors and that the medical board will review them. The ones she got from the ALS clinic did not describe what i could or could not do, so they got the ones from my internal doctor too... My ALS doctor wanted to see me in six months that was five months ago. I did not think i would need to see him but all this mouth twitching and speech problems has convinced me otherwise. I am going to make an appointment. I have not filed for SSDA... My internal doctor is allowing me to go back to work part time in June. I will get disability for the other hours, if it goes through. The disability company said that if my case is approved then they make it mandatory for you to file for Social Security. Please keep in touch, Sam
 

crystalkk

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Sam, please go back to als specialist so he can see what is going on.... I know you don't have insurance....but maybe the mda or alsa can pick up the tab..... can you e-mail or call the dr and explain the situation that you lost your health insurance and really need to see him.
 

sharonca

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The MDA and ALSA clinics in this area pick up the tab if the patient does not have insurance. Hopefully that is the case where you live also. They don't advertise that fact but a doctor at both places have told me is it true. Said that no one is turned away for lack of insurance.

Sharonca
 
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