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flora

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About a year and 1/2 ago I noticed that I was getting clumsy; falling down stairs and tripping alot. I thought I must just be getting old (I am 35). I then started to have severe cramps in my right foot and calf while I was sleeping. Then I started having them when I tried to do my stretches. Growing up I was a gymnist, cheerleader, and on the swimteam so I have always been very flexible. I was shocked when I started to lose flexibility and called my mom. She laughed and told me "welcome to middle age). I called my doctor and made an appt. Everything seemed to be ok, she did a cbc and all. About 3mnths later I started to get a plucking sensation in my leg and face, though not painful it drives me nuts. My doc orders an mri and schedules with a nuero. He said my mri is fine and I am having panic attacks. I don't think that I am a panic attack kinda girl (or wasnt) but went with it. He put me on effexor, and my friends were mad. I started to get cramps in my right calf...he tells me it's just the panic attacks and to ask my pcp for some muscle relaxers. I fall down the stairs again, call the neuro, he says to watch where I am stepping. I start noticing that it is hard to walk up the stairs, my legs feel like there are weights on them and start to hurt by just the middle of the steps. Anyway, this goes on and on and on. I fall down the stairs again and hurt my back and get admitted. The neuro checks my reflexes, says I have hyperrelfexia in both legs and one arm.....on to about a gazillion tests, none of them fun (one of the docs was pretty nice to look at though). Doc came in with a bunch of other docs. Says we believe you have als and they leave. I get discharged from the hospital and my doc makes me see a pt and tells me I have to go see another neuro who specializes in als. I think that this can't be happening to me, I am to young. My kids are to young to lose thier mom. None of my friends or family is cool with this. And I just flat out don't have the time to die.
Now onto my question....could anything else be causing this? Oh yeah, now my left two middle fingers are curled toward my palm and it feels like they are attached to rubberbands pulling on them. Again, not painful (except for the cramps I am getting in my forarm) but really aggravating. Thankyou all so much for reading all of this and I appreciate any kind of info or opinion offered.:mrgreen:
 

cheryilyn

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Flora,
You have come to the right place for info, There are a lot of knowledgeable people that hang out here. My advice would be to find an als clinic and go to them for an answer.
Best of luck to you.
 

Jeliota

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Wow, you have had some "special" doctors. I'm sorry you are having to go through all this. If you go back through the posts here, you'll find plenty of people who had "textbook" ALS symptoms and then were diagnosed with something treatable.

Just try to hang in there until you get to the ALS doc and let him/her make the diagnosis. Those are the docs who really know their stuff.

In the mean time, don't panic and watch where you're stepping. That'll be $500.
 

flora

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I wish my friends had your sense of humor. It would make this all a little more tolerable. Right now everybody just treats me like...well, like I'm dying. My mother and sister kidnapped me (for real) and my best friend hovers like a mama chick and tells me all the horror stories from the nicu where he works. My boyfriend is the only one who laughs at me when I trip and tells me I am entirely to blond and to polish.
 

Peg B

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Hi Flora,

Yes there are other things that could be causing this. As has been noted above and by your Docs, you need to go to an ALS clinic. This is my story:
About 5 years ago(2002) I started having symptoms. I fell several times in classes (teacher consultant) my legs tired and I thought my arthritis was getting worse. I fell on black ice off the porch and ended up with a back operation. On October 31 2006 after going to a hand surgeon for atrophy of my finger and hand weakness he sent me to third neuro who told me I had ALS for sure.
He sent me on to U of M ALS clinic and I had the tests EMG and nerve conduction for a fourth time. EMG was abnormal for 3 limbs.(positive for ALS) I have right hand/finger atrophy, weakness right hand spreading to left, leg weakness, fastiulations, cramps and one borderline conduction block. But no sign of upper neuron problems, so I am DX with either Multifocal Motor Neuropathy (MMN) or "Atypical ALS." The advantage is I am getting treatment for MMN which is IVIG. My symptoms improved a bit - I can move my finger a bit, and type better but I cannot write much (I have trouble writing a check) but I have more energy and I am not worse. They say that the symptoms will show themselves eventually and one of the DXs will stand but in the meantime I am living pretty well and feel better. It is looking more like MMN as of August 30, but no new EMG yet.

There are other diseases out there too. Keep us posted. Have fun and don't worry-it doesn't help. My prayers are with you. Best Wishes, Peg
 

CindyM

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Hello flora. Welcome to the forum. I am sorry for what is happening to you. I see you've already met some of our great members. This is definately the pace to come for information and support. We use humor around here a lot, too. Some of our long-time members have really funny stories about living with a body that has a mind of its own.

And several folks have been living with ALS for years. Peg says it best. try to enjoy your life and your family and let the health stuff take care of itself. Cindy
 

flora

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I do try not to think about it much, but I have found myself wondering if dying like that will hurt. I am the kind of person who has control issues so when the docs told me.....well, after I figured out what als was (they only said als. Nothing else, no explanation, nothing) I started to make sure that my life isurance was up to date, I found out how much it cost to creamate me so I can prepay, made sure I had a DNR, blah blah blah. I have a few friends that are supportive but my family is nutso....like jerry springer crazy, just with more money and no trailer park. I still can't believe they actually kidnapped me though I guess I really shouldn't be that suprised. Thats the hard part, trying to get it through thier heads that there has been no official diagnosed and to get off of me. Anyway, this is supposed to be a quick reply so I will quit [email protected]#$%. I hope you are all enjoying the fall. bye
 

liz

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OK Flora, I have to ask. How did your family kidnap you?
 

brooksea

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Flora,

Very sorry you are going thru this! Hope it really isn't ALS. It may be something else and I hope the ALS specialist will clear this up for you.

The kidnapping thing does intrigue me also...
 

Al

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Love your sense of humor flora. Keep it up.
AL.
 

flora

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Yep my mother and baby sister kidnapped me

I told my little sis what the docs said. My mom called me and told me that my sister was in hysterics and that I needed to come down to Columbus right away so that she could see that I was alright. I fell for it. I got down there and my sister stole my car keys and told me that I was not going back to cleveland! She put me in a chair and started to put pillows all over me, under my arms, behind my back, under my feet! She decided that I was not comfortable enough in the chair and made me go to the couch, and put the pillows all over me again and covered me up with a ton of blankets and sweaters. I tried to beat her with one of the pillows but she just took it and put it under my feet. She and my mom were in the kitchen cooking and I got up to go to the bathroom and Les came running into the living room and said "what are you doing? Why are you up"? I said that I had to pee, so she followed me into the bathroom! By the time dinner was ready I was exhausted and had no appetite what so ever. I am surprised they didn't try to feed me. My sister was hanging on to me for dear life and kept knocking me over and then freaking out because I would fall. I had to drag her all over the apt. to find my keys. I escaped, with her crying and telling me that I couldn't drive. When I got home my mom called and told me that Les took my bank card so that I have to come back down.....I will let you know how that works out.
 

Al

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Flora you and your family are a hoot. No disrespect meant. Keep us posted.
AL.
 

flora

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do you have good days with als or just bad days

The last couple of days I have been having some trouble moving my fingers. It's hard to pick up small thing or to button stuff. I am an interpreter for the deaf so sign language is something I can do in my sleep but now I am having problems making the letters. My two middle fingers keep wanting to pull in towards my palm and it actually hurts to make the r and u. Anywho...Everything that I have read says that ASL is not a painful disease but on some days my muscles hurt from cramps so bad I can barely walk and then some days the cramps are not so bad. My doc gave me a muscle relaxer but I try not to use it because I am worried that I am going to end up trying to sell my son's cats on the street for drugs. I really just think that the other docs are wrong cause I can still walk (as much as any blonde polok can) and sometimes I don't even need my cane. I know you guys said not to think to much about it until I see the spec. doc, but I thought maybe some one here might tell me about their experiences. Answers more than anything else will help me calm down a bit. I hope I am not bugging anyone.:confused:
 

Peg B

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Hi Flora,

Cramps just plain hurt. Tonic water helps a lot (contains Quinine). See if it helps. Best Wishes, Peg
 

liz

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Flora -

As for the good days and bad days, attitude makes all the difference. The ALS just does what it does. How good or bad of a day I have depends on how I direct my mental energy. Sure, there are moments when the "why did this have to happen to me" thinking gets a good grip. That's when it's time to find something outside of yourself to focus on and start looking for new things to do when old things must be given up. It's a hard disease to ignore because we must be attentive to avoid injury and manage symptoms. The challenge is to take charge so our days are not all about ALS.

Liz
 
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