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Noid

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Hi. I told my story breifly in the bottom intro part. Here's the short version. I go by Josi in real life. My mother died in 99, caused by liver failure from some form of sclerosis which she was diagnosed with days before her death. My father never remembered the name as he .. is just like that. He lost her urn as well.. long story.. but ..

Mum never told me as her liver failed first and instead of having five years.. she died within 6 months of becoming ill.. she never became paralyzed.. her liver went first.


Sooooooo... now I'm sick. I was recently diagnosed with Multiple Sclerosis. Got a big one on my head and a bunch on my spine..and I have been paralyzed.. and still am.... half. See, in februruary.. i felt funny. My limbs..both hands and legs began to feel like I was wearing silk over them. Lovely. Both legs, both hands. Over time..that feeling.. not the normal ms feeling.. has stayed. My hands have gotten progressively weaker ..from pinky to middle.. now a weak index.. and both legs. I have to look to see which way my toes are pointing. The ms flair cleared.. but the bilateral stuff is staying. My dr says.. well, you are progressive..... but.. with mum's history...

I have trouble.. my lungs get tingly and i have problems breathing.. my throat has problems, and I am just getting over another case of aspiration pneumonia... so whatever is happening to me, I can see and feel which way I am going. I've had problems getting to my computer chair, but am so lucky to be ab le to lean on things, and have trained my stiff and curled fingers to type relatively well. Either way.. I'd love to know some things. I just want to know from some experienced people... i was a fool for never knowing what my own mother had. I was young.

My main questions... this one is medical, and its ... with ALS, do lesions appear anywhere on mri images.

I also want to know if any of you guys have a tight band that goes all the way down your back from under yuur ribs that feels funny if you push on it... the ms people don't have that one.. i get that with a very sharp pain in my side, like a phantom stabber.

The third is.. what kinds of ALS are there, and is there a form that takes the organs before it takes the limbs?

Sorry to ask so bluntly.. but those are questions I haven't gotten a clear answer on the internet to.

As i said.. just here to learn. Glad to meet you all.
 

Sammantha

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"My main questions... this one is medical, and its ... with ALS, do lesions appear anywhere on mri images.

I also want to know if any of you guys have a tight band that goes all the way down your back from under yuur ribs that feels funny if you push on it... the ms people don't have that one.. i get that with a very sharp pain in my side, like a phantom stabber.

The third is.. what kinds of ALS are there, and is there a form that takes the organs before it takes the limbs? "

As far as i know lesions do not appear on your brain or spinal cord, because they look for that when finding an alternative diagnosis to ALS, such as MS.

I have not been diagnosed with ALS but i can say the middle of my back feels really tight, like a tight cord when i move or lean over. Sharp stabbing pains are indicative of MS and not ALS. There is ALS, PLS, PBP..............None of these affect organs. Your lungs eventually become affected because your muscles cannot push them up to take proper breathes or get rid of phlegm through cough. If you had abnormal organ findings an ALS doctor would referr you to someonelse because that is not indicative of the disease. There are however muscular dystrophies that affect organs, such as the gallbladder, uterus, and intestines..... There are other nuerological disorders that affect autonomic funtion which in turn affects organs, but they are not ALS. I hope this helps, Sam
 

awieleba

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HI josi,

sorry to hear about your mom and what you are going through! If you are concerned about what your mom had, would your dad be able to request a copy of her records? I dont know alot about the liver, but in december (before any my other stuff started and I have no diagnosed) my liver enzymes in a routine panel were elevated. they thought no big deal, you had a baby and whatever. So they have never went down. They are mildly elevated to extremly high. I did alot of my own research. So it is just my opinion of my own story. THey did a hepatitis panel, auto immune liver disorders, and even a ultrasound on my liver and abdominal ct scan. My liver was fine, they were looking for 'sclerosis'. that being hard patches that would show necrosis, tissue death. I dont think the sclerosis of the liver is anyway the same scleroisis as MS. I could be wrong.

are you on medicine for ms? are thinking your mom has als? or ms?

take care

april
 

Noid

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Hey thanks for all the answers so far. :) Still have alot to learn. With the MS, when something dosen't fit right, I find myself wondering if I have something else over top of it. My father... is remarried. I've asked him, but he's been very un cooperative. I know my mum didn't have Multiple Sclerosis, but a systematic organ failure. Her hands and legs didn't go out like mine though.

I appreciate your time, and ty.
 
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