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lcav281

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Hello, I am a fist time poster. My symptoms started this past summer. First noticed easy leg fatigue bike riding with my husband. I just couldn't quite keep up with him as normal and had to keep shifting down as my legs would get so tired. Same leg fatigue was happening upon just doing 2 flights of stairs as well. I am 46 years old, 5'6" and 130 pds. I have always been an active person and in average shape and no prior medical conditions. I had noticed I had been getting mentally fatigued as well. Waking up in mornings not feeling like I slept. By mid September, the fatigue was so bad I had difficulty functioning normally in my day to day tasks. I am not talking about feeling sleepy and needing a nap...this is more like feeling like I hadn't slept in days or just got done digging a ditch for 12 hours in a 105 degree day in the hot sun! My left leg/foot was getting much weaker and very easily fatigued and heavy feeling. Soon after, my left hand was starting to get weak,easily fatigued and heavy feeling. Then the twitching started in my left sided leg/foot & arm/hand. My left hand had become uncoordinated and clumsy. Also alot of neck pain that feels like tension which then causes headaches. I have been unable to work since mid September and it was then that my Dr. started running me through a battery of tests. Lyme disease, west nile (3 times), MRI & CT scan on head, an overwhelming abundance of blood work, spinal tap....everything keeps coming back normal. Dr. said....no brain tumor, no MS, no stroke, no aneurism. I am very glad that all these things are good....but then what the heck is wrong with me? After the Dr. ran out of tests that he could think to do on me and being very puzzled himself, he referred me to the mayo clinic in MN neurology dept. After mayo reviewed my files to see if they would even except me as a patient or not...a got a letter that they declined me. They said they didn't feel they had any more testing to offer me than my gp had already done. Hmmmm. I didn't quite get that and I was very disapointed about that. Aren't they specialists? Don't they pride themselves on diagnosing things that other Dr's couldn't? I hadn't even had a EMG or anything close to that done yet. Anyways, so my Dr. referred me to a neurologist in SF. I have only seen her once so far and go back again in 2 weeks. She did an EMG and Nerve conductive and said she was "pleased" with those results. She did say that I had over-reactive reflexes. She thought maybe there was some stenosis or other nerve problem in my neck and sent me to have an MRI on that. That came back fine too. In the meantime, I havent worked since mid September. Have medical bills coming in for all the tests that keep coming back fine...and still have no answers. The weakness and twitching is now starting on my right side and getting alot of twitching around my mouth area and cheeks. I also notice that I am very sensitive to heat. Seems like I get over heated easily and when I do I get an overwhelmiing feeling of exhaustion and fatigue. My gp started me in occupation/physical therapy and have had only one session of that so far. Upon my evaluation...the therapists said I have sygnificant loss of coordination in my left hand and Weakness on both sides of my body in which my right side is almost catching up to my left sided weakness. My therapist started me on some really low weights and a stair stepper. KICKED MY BUTT! He said he was starting me out slow....and I thought if this is slow, what the heck it gonna be like when he works me hard!

My Neurologist has not mentioned the words MND or ALS. But being so frustrated with no answers and wanting my life back....I started researching on-line. And based on my symptoms and what they have ruled out, I keep coming up with ALS. From what I understand there is no ONE TEST that diagnoses ALS and that it is a process of elimination. Well, they have ELIMINATED sooo much already....I am worried that they gonna run out of things to eliminate.

My question is: Does my story sound anything like what anyone else went through before getting a diagnosis? OR Does anyone know of anything else that it could be OTHER than ALS based on my symptoms? I am so frustrated with no answers. I think I can accept whatever it is...good or bad. But HOW do you accept something when you don't know what it is your supposed to accept? And the NOT KNOWING is a killer. I feel like so much time wasted waiting for a diagnosis when I could be out traveling or whatever with my husband while I STILL CAN! It's kinda hard to do that right now not knowing what my future holds. How would I explain to my employer that I can't come to work....but I can go out vacationing? But if I knew that I wasn't going back to work because I am terminal....heck ya, I'll be doing what I can while I can. But I just don't know.....
 

Bad Balance

Senior member
Joined
Dec 10, 2010
Messages
815
Reason
PALS
Diagnosis
12/2010
Country
US
State
GA
City
Atlanta
Wrong forum catagory?
 

lcav281

New member
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Dec 1, 2012
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8
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US
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SD
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Aberdeen
I am wondering why you think "wrong forum category" Bad balance? Is it because you think these are not ALS symptoms?
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,563
Reason
Lost a loved one
Diagnosis
07/2009
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US
State
CA
City
San Jose
The better place to post your questions would be in the "Is This ALS" section
 

lcav281

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US
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SD
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Aberdeen
Oh...I'm sorry. I am new to this forum stuff. My bad. Thank you for your help! ;)
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
US
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MA
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Southborough
Sorry you're still in limbo, but if it was definitely ALS, I don't think your doc would be pleased with the EMG results. So while it stinks to not have an answer the best thing to do is try to stay positive. You could also try to post the results of your emg for Wright to look at.

Good luck, I hope you find some better answers soon...
 

KathrynA

New member
Joined
Dec 2, 2012
Messages
2
Reason
Loved one DX
Country
Uni
State
MA
City
westfield
Hello! First off, i am really sorry that you have not gotten any answers, it is so frustrating! Your story sounds SO MUCH like my mother who has ASL. She was 52, in excellent shape non smoker who was very active. She was walking my dogs one day and just fell down. After that she had a limp that progressively got worse. She was an RN and would have a hard time taking off her scrub tops after work. She then experienced alot of spasms in her legs and arms. She eventually began using a walker . She had to leave work and went through all the same tests, lymes and tons of more. They diagnosed her with MS but about every 3 months she would get worse. After being admitted to the hospital nearly 3 years later we were told it was way too aggressive to be MS and was ALS. I went to a support group for ALS and there was a woman there who was a Dr. and she said that she went through the same thing for years and always suspected it was als. On avg from people who i have talked to it has taken them about 2 years for an answer and i think that is just because the symptoms can progress to slowly. i hope my input helped a little. Stay strong and keep doing what you are doing
 

lcav281

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Dec 1, 2012
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SD
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Thank you Helen for your response. The thing that worries me about the EMG...is that I have read posts by confirmed ALS patients that had good EMG's early and bad ones later. Being my symptoms are pretty recent considering the average time frame it takes for an ALS diagnosis. Also, this may be a dumb question...but who is Wright? Thank you!
 

lcav281

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Joined
Dec 1, 2012
Messages
8
Country
US
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SD
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Aberdeen
Thank you so much for your response Kathryn! So sorry to hear of your mother having ALS. Yes, I agree...my symptoms do sound alot like how hers started. Just wish there was "A test" available to confirm such a terrible disease one way or the other. With a disease like ALS...when the "clock is ticking" time is so valuable and there is such a waste of time that a person can't get back waiting for a diagnosis. God Bless your mother and God Bless you too Kathryn for being such a loving and caring daughter as it is quite apparent to me!
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,280
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
I went through 5 years of bouncing from dr to dr and finally got a diagnosis. But during that time I did not waste time waiting. I did not put my life on hold. I did learn patience and being stubborn not giving up. I knew something was wrong and kept telling my storyto who ever would listen and that is what I recommend. I found a way to keep doing the things I love, I may not be able to do them the same way or as long as I would like but it is better that not doing at all. Have hope, don't let the worry and anxiety take over your life. I wish you peace.
 

sunewun

Active member
Joined
Jun 22, 2012
Messages
81
Reason
PALS
Diagnosis
06/2012
Country
US
State
TENNESSEE
City
Camden
Well I'm not sure exactly "who" Wright is but he has a lot of knowledge and is very informative. Maybe he can help. It is somewhat difficult to diagnose on the internet though. Waiting is hard but that may be your only answer.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
US
State
MA
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Southborough
Wright has helped many folks here interpret their EMG results... I believe he's a professor, but really not sure! He is legendary here though... :)

Not sure if I should post his page, so just go to Advanced Search and type in his name... you can also read some of the posts that he's helped others.
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
Kay,
It took almost a yr. to diagnose my late wife. It sounds like you have als. I am sorry,because no matter what anyone says, it is a death sentance. Usually it take about 36 months to do its dirty work and then you are history. My wife and I tried everything and exercise and PT only hurt you. You,I, everyone faces death sooner or later. You may face it sooner, or I could fall dead tonight. Who knows. It is important to know who takes the sting out of death. His name is Jesus. He says, because I live you will also. Trust Him in this battle of yours. Life is like a vapor (Psalms). Do not fill this vapor with the cares of this world, whether it be things or healing or whatever. It is really too short to matter when you think of where you will spend eternity. Not all go to Heaven. Only the ones who are covered by the atoning blood of Jesus. He clearly says I am the way, the truth and the life, NO ONE comes to the Father except through Me.
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,569
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
SD-

None of us here are diagnosticians- not even Hangingon. Please let your physicians get to the bottom of it.

Wishing you well,
 

sadiemae

Extremely helpful member
Joined
Sep 20, 2009
Messages
2,527
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
My husband got his D X in less than 20 minutes. He had symptoms for a couple yes before, just did not go to doctor. He has had ALS for 61 months now, still can talk, eat, and breathing without need for BiPap. He is unable to walk. Everyone hasdifferent progression and lifespans.
 
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