No one knows

rduvall06 · 07-08-2009, 12:53 AM

So I am looking for help does this sound like anyone's ALS story? I have been told it's not a stroke, ms, parkinsons or huntingtons but have not been told its not als. About a year ago we noticed I was dropping things especially with my left hand and tripping ALOT. Chalked it up to being not so graceful. Then could no longer write with my left hand in Feb 09. Still not a big deal as I can write both left and right side but made a note to go to doc. Got busy didnt go. In march had hard time typing w/left hand and noticed jaw "cramps" and abdominal and stomach muscle cramps and weakness some fatigue. Just thought I needed rest. Took a cruise thought I just couldnt adjust to "sea legs" so spent most time in cabin. or tripping. came home felt fatigue and left side stroke like symptoms muscle weakness spasms. out of hospital still weak. Have now progressed to using wheelchair all the time because of fatigue and severe trunk shaking when fatigued. Head leans to right when fatigued. Baclofen has helped w/cramps and spasms. Neurologist seemed disinterested but worse now. My pcp has been great there is a movement specialist but cant get in until 10/07/09. Also, have to chew my vitamins and pills trouble swallowing not severe but seems like I choked on my own saliva or just water sometimes. Any suggestions? Does this sound familiar to any of you who have ALS? How can I get some answers I'm getting pt and ot which is helpful and now have a voice unit to type on computer. I guess I feel like "HELLOOOOOOOO? anyone notice my life is being turned upside down and doctors seem rather "oh well this is how it works". I'm frustrated. Staying positive and hopeful but need some answers from somewhere. any ideas where to turn?

Zaphoon · 07-08-2009, 11:56 AM

What sort of tests have you had for the doctors to rule out MS, PD, and stroke? Have you had any MRI's, EMG's/NCV's? What kind of bloodwork have you had?

From the looks of things, you are in pretty bad shape and I'm sorry you are having so much difficulty.

You are very close to the Washington University MDA clinic. Have you thought about getting a referral from your neurologist to get in and be seen by Wash U?

Zaphoon

rduvall06 · 07-08-2009, 02:17 PM

negative mri's blood work all negative, seeing dr. kevin black wash u specialist but cant get in till 10/7 on emergency wait list. normal ekg. the mda clinic who are the docs

millinero · 07-08-2009, 04:48 PM

Rduvall have u had an EMG/NCV yet?

GlenBrittle · 07-08-2009, 04:56 PM

Hang Tough there . I know , waiting is the worst .
So far , you do not have ALS , because the neurologists have not said so.

Try to relax , go have whatever fun you can have , to eat up the time until your next appointment.

Glen

rduvall06 · 07-09-2009, 10:44 AM

not emg or other yet pcp said didnt think it is als cause als starts in legs but now confused cause thought stumbling and trippin is in legs and where it all started. going with what he said so far as hope. wonder if he isnt just sayig that initially to alleviate fear and hoping he;s right. but not knowing and feeling like I'm missing out on treatment because no diagnosis is really exasperating. treating shymptoms and you are right live day at a time and be thankful for even the little things. still able to shower (although seated) and go to bathroom (though difficult) by myself. it is the little things that i must learn to appreciate

rom623 · 07-09-2009, 11:33 AM

rduvall06,
My recommendation - DO NOT wait until October. There should be some good neuros who understand neuromuscular conditions in your area who will give you EMC/NCV tests. Just about everyone I read about here has had an EMG and NCV, often early in the process. I had one within days of starting downhill.

BethU · 07-09-2009, 12:41 PM

You definitely need a neuro who knows what he/she is talking about and who cares about the patient! Keep reminding the scheduling department for Dr. Black that you need to be seen asap to get this resolved.

Have you contacted MDA (Muscular Dystrophy Assoc., which sponsors treatment and research for ALS and other diseases) and ALSA (ALS Assoc.) ?? I got the run-around at UCLA for so long just trying to be evaluated for care at the clinic, MDA and ALSA finally pulled some strings and actually got me in the next day. It is especially maddening when your speech is affected and communication is so difficult.

It's horrible that it has to be this way, but we have to fight the system as well as the disease. It is the squeaky wheel that gets the oil, so hang tough. Fingers crossed there is a cancellation sooner than October.

millinero · 07-09-2009, 03:39 PM

i would suggest u get an appointment with a good neuro...who definately after going through ur previous tests would suggest an EMG/NCV..and dont wait till october...its better sooner than later....and i hope its something other than MND ...of which there are bright chances....good luck!

Lorie · 07-12-2009, 06:07 PM

Get to a Neuro. Specialist in these diseases. Sometimes these gerneral Neuro's don't get it. Finally mine did when my EMG was worse than in Feb. 08. And all the other symptoms that go along with it. Like my Brother, My symptoms have moved like a Snail.
The EMG and symptoms tells a lot. You have to be aggressive with these Doc's.

Lorie -Good Luck!

Uriel · 07-12-2009, 06:57 PM

where do you live? sometimes hospitals in your area will have foundations that will help you with expenses if you qualify I know Cleveland Clinic has a really great program for people that qualify

blessings

uriel

brooksea · 07-14-2009, 11:30 AM

Hate to say it, but your pcp is an idiot! ALS doesn't "start" in a specific place such as the legs for all people. It is different for everyone.

Please make a fuss and get into an ALS Clinic! Do as Beth says and contact the ALSA and MDA for help!!!

Wish you luck!

Lorie · 07-16-2009, 12:31 AM

Dido CJ. For some reason I get the impression that a lot of people think ALS starts the same as everybody else. We know it does not. Everyone is different. I know first hand!

Lorie

MtPockets · 07-16-2009, 09:00 AM

It is different for almost every person. That is one of the mysterious about ALS. There are so many forms and different speeds of the development of the disease.
I had 4 men diagnosed at the same time I was dx which was may 11, 2006. I have limb onset that started in my feet and legs. I have been blessed with slow progression of the disease even thou I have no movement below the waist And I am in a powered wheel chair, because I do not have enough strength in my hands and arms to move a manual chair.
The other 4 men that were dx at the same time as me are all dead. Their form of ALS moved very quickly.
So, no there is not one place ALS starts, and their are so many variations to this disease it amazes me to hear someone would make a statement that is always starts in the legs.