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pldo

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Some days my symptom get worse and when I try to tell people they tell me I am stressed, be happy, etc- well sometimes I CANT because I just want to feel well again! Just needed to vent for a minute. . .

Thanks
 

lhagsjr

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Pldo

believe my girl Ann Marie, she is here 24/7 :)
 

pldo

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Thank you so much! I know that all of you do not know me from a whole in the wall but it feels goods to have freinds that will pick you up. It is just that it seems as if one symptom gets better. . . one gets worse. . . I just do not fell well/right and I wish there was something that I could do about it.
 

mamaoftwo

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Trust me, pldo, i am right there with you. My hand is so sore and weak today. Some days some of my symptoms are worse than others. It changes all the time. One day I have such bad vocal cord probs that I can barely speak, the next day, its my legs that are cramping and twitching, the next my left hand and arm are giving me real trouble. And through it all fear prevails. i understand and so do all the others here.
Sometimes, i think that we all walk such a fine line between life and death. We really never know when our time is up. So I try as best I can to tell myself that each day is my last and make the most. Doesnt always work but as my husband keeps telling me - you only have 2 choices, fight or give up.
 

pldo

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Thats me. . . trouble swallowing ebbs and flows. . .same with twitching .. . headaches. . . etc. I want to fight . . I also wish that I did not have to. I guess that G-d gives us what we can bear.
 

janf

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I Can Honestly Say I Had No Peace In The Begining . I Prayed So Hard For Peace Now I'm Peaceful Ask Him For What You Need He Will Help You. God Bless Jan
 

CindyM

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Pldo- depression is a tough one. Hopefully it has passed by now. If not, please get up the courage to ask your Doc for meds because you deserve some peace. I hope you are feeling better today...Cindy
 

Icanmanz

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Bless you pido. I can imagine the feeling of depression due to the fact of your illness. Will be praying for you.

Irma
 

Icanmanz

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Jan, your advice is so strong. Bless you!
 

ltr

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The good news, mama and pldo, is that symptoms of als do not come and go, like your hand one day and your vocal cords the next......but myopathy and myositis symptoms do exactly that. I have days where my voice is so weak and hoarse I could hardly get sound out and the next hour it was gone. My legs also do that, are extremely weak, won't work and at another point in the day they feel better, never back to normal, but better. Metabolic myopathies are known for symptoms waxing and waning and DO NOT always show on EMG's or CK's, so don't let that stop you from checking that diagnosed. thoroughly. The Johns Hopkins Myositis Clinic website specifically says it takes a myositis specialist to track this down and much of the time only a muscle bx will show it. It also says they have found people who have been sick for years who have it and their docs didn't know what was wrong with them. Please, check it out and don't stop advocating for yourself, get answers!

http://www.hopkinsmedicine.org/rheumatology/clinics/myositis_center.html
 

pldo

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I am feeling a little better today. Ltr- do you know of any other center besides the Hopkins ones that does this kind of testing? My neuro says no need for a muscle biopsy b/c clean emg and ck levels. I have gone to a regular neuro, an als specialist, an obgyn. a gp, etc. Do you think I should just go to DC and try to get an appt at Hopkins?
 

ltr

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I actually talked to a researcher from the National Institute of Health who told me about Johns Hopkins Myositis Clinic, otherwise I wouldn't have known. But, maybe you can check the internet for some closer to you. Don't be discouraged if they are difficult to get into, they are packed with people and only accept certain, so if at first you don't succeed....! You can even ask your regular neuro, though, they really seem to get a little offended. My CK and EMG were clean so if my neuro didn't go the extra step for the biopsy, I'd really be a mess. Try discussing it and see what happens. Good luck.
 

mamaoftwo

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Leslie - I was reading a womans web site the a couple of nights back who has ALS. She said that her symptoms DO come and go. One day she can lift her arms over her head, the next she cannot. She said that the only thing that makes the disease bearable for her is knowing that tomorrow might be a little better than today. I will try to find the link and will post it.
So I dont think its necessarily as clear cut as we think ie that ALS symptoms just get worse and worse. That is certainly true over time but I think one day to the next can be different.
PALS?
 

ltr

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Symptoms of als DO NOT come and go. You do not gain motor neurons back. Once they're gone, they're gone! You can have days that you feel better than others, where some other muscles may pick up some of the flack, but that's all. All the PALS agree on this one, and it leaves room for a different diagnosis. So, please, think about other, treatable diagnoses. :-D
 

Jamiet

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Every case is different,

PLDO, are you thinking of getting lyme tested, you said the rocephin helped you, that is a good sign, you need to find one. Lyme symptoms do come and go and the pain moves around.

hang in there yall....

rgds,

jamie
 
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