Old 06-01-2011, 01:01 AM #1
munecagirl22
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Default Possible als or fibromyalgia opinions please?

been a while for diagnosed i thought it was MS never heard of ALS untill a posting on MS site lady said possible MS.. but wait and see, ive had twitching since aug or earlier of 10* and has gotton worst, alsoo had lower back spasms which thught i hurt at wrk blew EVRYTHING OFF.. i mean what little things that could be serious?. ive had 2 brain mris NO LEISONS, i have had a LP which iam waiting on and have had MRI of cevial and tharic spine now there were white circles on it about 8! and radiologist report said no plaqs consistant w ms and no herniated disk.. i have leg weakness mainly.. my story if you would like to read of not opinions please... also twitching is every hr diffent parts of bod while relazing seems worst...

last yr notcied things happening like back spasms which i thught were kindey infections and then noticed tiwtching eye.. differ places ate banas thught low in posisum(was not) then come feb this yr i noticed my mouth starts twiching badly when smileing only then i knew somethig is wrong.. came hme and all of a sudden got REALLLLY weak so weak my tummy hurt went to ER nothing did ALL TEST heart montots u name it, was put on anity meds, nothing helpd, then got better after 3-4wks then happend again for about a wk but not as bad as the 1st then happend again. again not like 1st time then i got ok again.. but still had twiching, some trenour and shakenss when doing stuff walking on stairs (down espicaly) then i thught ok am getting better then statd that heavy shakey feeling again weak, when i do evercise now iam soo shakey inside and out and its a weak feeling when i walk its a feeling i cant explain.. so now what?.. have not done the nerve testing guess thats next.. u thught it was ms bc i have the numbess and tigly when waking up or sittting wrong way mainly in hands sometimes legs also sometimes when iam ging to sleep i jerk really qucikk,, i never ever did that before thats new.. and the weakness/hevnes has NOT gone away i mean i walk and all and do most nor things but its worst then in feb.. also on spine mri i have white tiny cricles.. not sure what those are md shurggs shulders.. any opinions please?
 
Old 06-01-2011, 02:07 AM #2
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Default Re: Possible als opinions please?

What have your doctors said about your problems?

And, no offense intended, but it is almost impossible to figure out what you are describing about yourself amidst all the misspelled words and run-on sentences with eccentric punctuation. Please simplify things and ask your most important questions as clearly as you can. If we need more information to help you, we'll ask for it.
 
Old 06-01-2011, 09:54 AM #3
munecagirl22
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Default Re: Possible als opinions please?

Quote:
Originally Posted by trfogey View Post
What have your doctors said about your problems?

And, no offense intended, but it is almost impossible to figure out what you are describing about yourself amidst all the misspelled words and run-on sentences with eccentric punctuation. Please simplify things and ask your most important questions as clearly as you can. If we need more information to help you, we'll ask for it.
@TRFOGEY... i think you need a chill pill i didnt come on to this site for anyone tp be mr spelling bee champ of the year i reread my posting and yes maybe a few wrds arent spelld right ,but that are abbreviated like in texting ... so if you have nothing nice to say just bypass the posting.. people on here come for help that already have eneough pain misery and hurt as it is.. you dont need tp add on top of it all!
 
Old 06-01-2011, 10:11 AM #4
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Default Re: Possible als opinions please?

Quote:
Originally Posted by munecagirl22 View Post
@TRFOGEY... i think you need a chill pill i didnt come on to this site for anyone tp be mr spelling bee champ of the year i reread my posting and yes maybe a few wrds arent spelld right ,but that are abbreviated like in texting ... so if you have nothing nice to say just bypass the posting.. people on here come for help that already have eneough pain misery and hurt as it is.. you dont need tp add on top of it all!

If you look back, i try very hard to answer questions from almost everyone that posts in this section. I'm not diagnosed and it's a nightmare to not have a diagnosis. We realize that.

Your post above is totally out of line. You are dealing with people here that HAVE ALS. Many with severely limited abilities.

Some are typing with their eyes one freaking letter at a time. Do you want to talk about pain and misery? ReallY?

Use your texting abbreviations with your friends--not with a population of people that have a difficult enough time replying at all--and take the time to do so to allay fears.

trfogey explained to you very nicely that your original post was very difficult to read. I couldn't make much sense of it either. It's not required to be a spelling champion--but remember, not everyone is 'texting' literate. I happen to use text quite often--and I don't have a clue what you meant with 90% of your post.

The radiologist report should have said what the white spots were. If they didn't--perhaps they were normal areas within the spine as seen on MRI.

Quote:
my story if you would like to read of not opinions please
.

I have no idea what the above even means. That's just one sample.

You mentioned you don't know what ALS is--let me tell you.

It's a terminal debilitating condition that causes paralysis of ALL VOLUNTARY muscles in the body--EVERY ONE. Eventually, if the PAL lives long enough--they are 'locked in'--which means NOTHING works anymore. NOTHING but their eyes and their brain. EVERY OTHER MUSCLE is paralyzed. They can not eat, speak, cough, breath, sit up, use their hands, walk---NOTHING. And you want to talk about 'pain and misery"?

Generally, it starts with progressive weakness--it doesn't come and go--just continues to get worse--usually one limb at a time. The 'comes and goes" within your first post would point away from ALS--which is good news for you.

If you want help from the members of this community take that chill pill yourself and ask direct questions those with knowledge will take the time to answer.

It can be very difficult to read posts that are long paragraphs with very confusing sentence structure. Some can't help it--if you can't--then nicely say so--but don't come here and jump on the one person that took the time to try to help you get the answers you seek.

trfogey is more than capable of replying--but frankly, you just ticked me off. But-in an attempt to allay your fears--PAIN and sensory issues definitely point away from ALS
 
Old 06-01-2011, 10:30 AM #5
munecagirl22
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Default Possible als symtoms?/

weak arms feeling (can still pick things up) weak shakey legs weird feeling when walking espically downstairs,, i just tried to get on my tippytoes last night i couldnt do it i kept falling over balance wayyy off... i could stay not even a sec and the sec i did stay i was soo wobbly i almost fell over (I USED TO BE A BALLERINA).. so i know the differnce.. i have had progressive worsting twitching in my whole body. eyes face knees toes u name it... i have had 2 brain mris-clear, i have had a spinal tap , and a mri of thoric and cervical spine which i see white 8-9 circles on it ,. but report came back no plaqs consistant w ms.. which i thught it was, also have some what of a tremour, and lowers back spams (one of 1st signs was back and twtiching) now since feb i have gotton worst .. weak.heavy feeling never lets up.. yes i can still walk w NO assistance but maybe this is the early signs?.. also since feb when i tryd to pick up exercise i statrs yoga and when say i do a pose my legs shake sooooo badly..
 
Old 06-01-2011, 10:42 AM #6
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Default Re: Possible als symtoms?/

I'd suggest you start with your Gp and see what he/she thinks about the weakness. Did you read the report or are you summarizing what you were told?

If you're concerned--and as young as I think you are--take the films and see if you can get a neurologist to review them for MS. MS can take years to show the lesions that are specific, I believe.

Coming and going is a pretty common thing in MS. There are several types. Most here won't be able to give you much info on MS, though, I wouldn't think.

The fact that you have multiple areas of the body involved would point away from ALS. It generally would have started in ONE area. Usually what sends those ultimately diagnosed with ALS to the doctor is an inability to use a particular body part--foot drop--hands won't work to turn a key in the car--that get progressively worse with varying degrees of speed. I've never heard of a case of ALS starting with generalized weakness all over.

I HAVE seen fibromyalgia cause bodywide weakness and muscle fatigue--and yes, it can come early in life. My daughter is 28 and was diagnosed with it when she was barely 20. I've had it for 20 years.

Good luck to you.
 
Old 06-01-2011, 02:01 PM #7
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Default Re: Possible als opinions please?

Quote:
Originally Posted by munecagirl22 View Post
@TRFOGEY... i think you need a chill pill i didnt come on to this site for anyone tp be mr spelling bee champ of the year i reread my posting and yes maybe a few wrds arent spelld right ,but that are abbreviated like in texting ... so if you have nothing nice to say just bypass the posting.. people on here come for help that already have eneough pain misery and hurt as it is.. you dont need tp add on top of it all!
Take a chill pill yourself. Save your outrageous outrage for your texting buddies. Most of the people here who can help you don't speak "text" and others (like me) prefer to spend our time helping grownups who respect other people, rather than wasting it on silly adolescents with bad attitudes, overactive imaginations, and too much free time on their hands.

Your move?
 
Old 06-01-2011, 02:07 PM #8
Al
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Default Re: Possible als opinions please?

I don't TEXT either and find it annoying along with your attitude. Please settle down or go somewhere else. I run this site and right now I will not take any BS. And BS is not text.

AL.
 
Old 06-01-2011, 02:40 PM #9
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Default Re: Possible als opinions please?

Why would you expect anyone to take time unravelling all that jumble, especially when you have a terrible attitude. I have one suggestion.....go away.
 
Old 06-01-2011, 05:52 PM #10
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Default Re: Possible als opinions please?

I thought trfogey's initial response was pretty polite, unlike newbie's response to tr.

Oh, I don't text either and as a former cryptologist, it bugs me to have to decipher a post, myself.

Last edited by Zaphoon : 06-01-2011 at 05:53 PM Reason: added
 
Old 06-01-2011, 07:17 PM #11
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Default Re: Possible als symtoms?/

Hey about 5% of people who have a clean brain scan will go on to have ms.Was the test done w/o contrast that ll will make a difference and the strength of the mri 1t vs 3t.have you had any probelms with your vision, ms normally starts with the eyes and it comes and goes unless its primary progressive which usually effects older men like als.We ole guys r so lucky.Ms and als share alot of the same symptoms except in als the nerve axons are killed off and permenantly damaged.Also like notme sais ms sometimes takes years before the lesions are visble on an mri.If you are worried about als go have a emg test at your nuero, and if its ruled out look into ms.Although ms is a bad disease it normally not fatal,im sure most people on this forum would trade als for ms anyday.Good luck
 
Old 06-01-2011, 07:17 PM #12
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Default Re: Possible als opinions please?

@munecagirl22 Take a breath. Seriously...take a breath. Ok, now that you have a clearer mind, no one on here has meant offense. Tfrogey even put that in her response"I mean no offense..." The short of it is that it was hard to read your post. And I am a younger member...yes I am 24 years old and I HAVE been diagnosed with ALS. Now how is that for misery? People on here are an older generation usually and text is hard to read...especially when you are trying to help as many people as possible on the forum. We all know you did not come here with a light heart. The only reason someone visits this site is if the 3 little letters A L S come up somehow, somewhere in their life...and that is enough to scare anyone. I am not sure about the white circles on your scans...I would ask for a copy or the original film and take it to a specialist/ second doctor to look at and evaluate...obviously it doesn't sound normal and should be looked at further for diagnoses. Please be considerate, and if you post in the future be aware that the people answering are going through their own hell. You are not alone in this whatever it is the 'this' that you have. Best Wishes.
 
Old 06-01-2011, 07:42 PM #13
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Default Re: Possible als symtoms?/

Ms does not " normaly" start with the eyes . It "sometimes" starts with the eyes. Try not to spread misinformation!
 
Old 06-01-2011, 11:09 PM #14
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Default Re: Possible als symtoms?/

i dont really have eye issues... but startd out twitching and back spams last yr that got slowwly worst now they are every single day and every hr...they dont bother me but weakness does...they are all unsure and i need to get the nerve testing next...iam 25 and since they are seeming TO ALLL SAY I dont have MS iam looking into other possibilites.. iam not normal and havnt been for a while the weakness tho is something new since for me.. scareyyy....
 
Old 06-01-2011, 11:24 PM #15
munecagirl22
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Default Re: Possible als opinions please?

HELLO
and i thank you so very much for your comment and iam so very very very very sorry for your diagnosis you have no idea.. it hits home in ways, o guess i could say..tho i have no diagnosed as of yet and still in the diagnosed process, also i dont inderstand what so ever what people mean w my attitude or any of that matter i askd a simple question and i didnt get a responce instead i got a rude paragraph back of my spelling ect etc and i see too many times on sites that are supposed to be helpful and insightful to others not put someone down in ANY WAY.. ans i guess i see it soo much i get upset and i guess my "txting" type paragraph was obvisly offensive to everyone on here which hoesnty shocks me it was not intentoal i type fast and its what iam used to.. i dont see what people didnt inderstand but thats ok?... ,but your were sweet and i do also understand people are going thru there own personal hell on here and i do mean personal hell on this earth and its horrid iam also going thru a lot tho i cant even say iam going thru my own personal hell i guess id say that before i knew what things were really about in life.. and you... wow. 24 iam 25.. i must ask if you dont mind.. what were your inital symtoms and how did they diagnosed you what testing/? what did they say ur prognisis is for such a young lady.../?.. ive reasearch this some and it seems that this is rather comon tho ive never heard of it untill this and now...i was looking at something online a photo of ALS and MND w images which sorta lookd like mine.. but i have no idea and i wont begin too thorw out how i feel on this site.. and iam not in pain nor do i have senitvite skin or sensitive from heat dr said i had very strong reflexes which sometime indicated throid.. but i have had that and everything else testd to me normal.. so if you dont mind please some insight/ info?..thanks
 
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