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Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
Hello all,

I thought it would be interesting to know each of your stories (again) on some, but this time in context from start to present, possibly timeline, highlighting important times, such as symptom to diagnosed (or un-diagnosed) to current.

I'm particulary interested in:

1) Symptomps prior to Dx
2) Were you mis-diag or was is suspected ALS from start
3) Were you ever told, by the ALS clinic or the spec. that what you have "IS NOT" Als
4) Vistits with Doctors (the important ones), pre diagnosed and post diagnosed
5) What people around you (friends / family / co workers) would tell you when you started having problems...i.e. did they think you were crazy...etc.
6) How did it affect your home life / marriage.
7) What type do you have (Bulbar / LImb)
8) What are the concurrent symtopms and are there any unusual ALS Sypmtoms, like pain, numbmess, tongue hurting, chills, etc etc...
9) How crazy you think i am....LOL....Just joking on this one...gotta keep up the humor, but feel free to comment..
10) Treatments, when started and how they have worked. Should relate the treatement to symptoms if possible and their relief or failure.


I'm thinking of creating a database, as we have a database programmer in our office, that can set us up. It's MS sql database run, mabye, we can incorporate it into the site one day Al...just a thought, but, where else, can you get a wealth of info, except PLM, which is confusing to me. I'm going to start on a personal project and c where it goes...you never know.

Just so you all know, i'm not one of the students looking for information, i'm looking to be able to start comparing and possibly charting "symptoms", "treatments", etc etc, so that when a new person joins, with ALS or Questions, we could supply them with a wealth of info quickly...

PLease, take 10 or 20 minutes and fill in your info. Please try to number and index them so they can easily be copied and pasted.

Rgds,

Jamie
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
691
Country
US
State
NY
Jamie - are you looking just for members who have a definite diagnosed of als? Since you are still undiagnosed, are you interested in members who have the same symptoms (of als), but are not yet diagnosed? I know of at least one member who has been diagnosed with als, but hasn't filled the criteria necessary for diagnosis. Let us know! Leslie
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
All persons, undiag and diag.

I'm undiag and it will be interesting to compare, what my problems are to others that are undiag and until you put this on paper, on a chart, it's difficult to see trends, etc.
 

westjlittle

Active member
Joined
Dec 12, 2006
Messages
52
Reason
PALS
Diagnosis
October 2006
Country
US
State
CO
Survey

As a website developer myself, I would like to suggest another alternative to creating your own database. I had the same idea until I found the site you reference.

Many times the developer of the site is not a 'user' of the site. They have an idea of how it should work, but have knowledge of the intimate details of the website, which prevents them from understand where the usability issues are.

A better solution would be to provide comments to the site you reference. I'm sure that the developer of the site would be very interested in your usability issues.

For example, a good comment would be "I pressed this button and I expected ____ to happen but it didn't"

Jim
 

ltr

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Joined
Feb 11, 2007
Messages
691
Country
US
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NY
Well, Jamie, here it is! Ask me anything you need! Good luck. Leslie



1. Before I developed symptoms similar to ALS, I had autonomic nervous system problems. My heart rate would accelerate, sometimes leave rhythm and my blood pressure would rise on the average to 155/94. I am 5’8” and 134 pounds, rather lean and BP was never and is now not problem. These episodes would also feel as if I touched an electrical outlet. A few months later I developed tremors, weak legs, extreme fatigue. Then within weeks I developed fasciculations in my legs, now everywhere. I continue with the latter listed symptoms.
2. The doctor’s had no idea what was happening. First I was diagnosed with a pheochromocytoma, then MS, then fibromyalgia, then chronic fatigue. ALS has not been suspected, to my knowledge.
3. Yes, I was told by the ALS clinic I do not have ALS, clean EMG, but maybe Isaac's or some neuropathy.
4. I have seen my PCP, cardiologist, electrophysiologist, endocrine, neuro nurse practitioner and then neuro at ALS clinic. The electrophysiologist gave me adrenalin for a procedure and my heart rate went to 300 beats per minute. He diagnosed pheochromocytoma confirmed by endocrinologist who later said MS.
5. Only PCP said crazy, only not to my face, but to an ER doctor. I used to work there (unbenounced to the PCP), so the doc told me what he said. Friends have all disappeared. Family sees the fascic’s and know’s how strong and independent I am, so they believe there is a problem.
6. These symptoms originally had ruined my life. I only dwelled on being the “old” me. Now I have accepted me and found other ways to be accepting of the “new” me. My children, though, suffered tremendously when I first became ill. I talked to them about my worst fears and what I did was implant horrible fear within them.
7. I haven’t been diagnosed, but my symptoms began with my legs, then arms and now I get cramping and weakness in my jaw and tongue.
8. I get paresthesias, shooting pains (mostly legs), cramping in my cranial muscles, extreme fatigue, occasional knife like pain.
9. I don’t think you’re crazy! You are intelligent and trying to make sense of all this.
10. Started with beta-blockers (I thought this may be the cause of tremors and weakness, but it never went away), then calcium channel blockers, Xanax for anxiety, amitriptylline, Darvocet, quinine (didn’t take because of heart rhythm), Cymbalta. All I am taking is occasional Xanax, Vitamin B’s, calcium, D, E. Had aqua physical therapy which made me feel good that I was doing something, but didn’t help strength
 

Jamiet

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Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
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Louisiana
Jim,

Makes sense, but this is more of a personal project. I'm an analystist by nature, just embarking on a research project to compare myself and others, esp. undiag vs. diag. I think it will be interesting, but a little bit different perspective than PLM.

I will also look at the other site, but my problem is the time it takes to download each persons info or look it up.


rgds,

jamie
 

Jamiet

Senior member
Joined
Nov 27, 2006
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616
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Learn about ALS
Country
US
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Louisiana
Leslie,

Perfect! I'll put my story up too, and will start thinking of ways to consolidate this into one file. Hopefully we'll get a good response.

thx,

jamie
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
One issue I have when I look at tools like the Functional Rating Scale is that I think there's a lot of subjectivity in the way we report our symptoms. In my opinion, a lot of this has to do with peoples' temperament and outlook which I believe affects whether and how they self-report, especially the severity of their symptoms. While I find things like this interesting to look at, in the end I can't quite decide how useful this type of information really is for me.

Liz
 

CindyM

Extremely helpful member
Joined
Sep 17, 2006
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3,543
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Learn about ALS
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New England
I think the fact that most of our problems can only be measured by subjective means is one of the frustrations that everybody faces. As I said on another thread, if my fingers tingle, how bad to they tingle and how do we prove it? I'm suspecting the detoriation is only evident when it gets picked up in an EMG.

This subjectivity shows up in the way doctors DX things, too. One may be ready to make a clinical evaluation much sooner than another, since they can't actually test us for MND.

So the anecdotal evidence that any survey might gather will be just that: anecdotal. Not that there's anything wrong with that. Cindy
 

ltr

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Feb 11, 2007
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691
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NY
Hey guys - Jamie only wrote that it would be "interesting" to put stories together. I think it would be nice if we helped him out-- it certainly can't hurt and definitely will be interesting to see the end results! :idea:
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
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Louisiana
Liz and Cindy, i understand your points, all i was asking, was for a personal research project, which maybe, just maybe could be given, to the people who come here looking for some answers. I've noticed, we get about 1 - 2 per week or so, new, with questions.

All symptoms, are very subjective, but, you won't mention them unless you have them, hence, they are a symptom and / or result of illness. I'm sure, if data on 30 or 40 people were combined, you would find interest in it, if not, the next person down the line, scared out of their mind and freaking out because they are having muscle twitches, weakness, atrophy, etc etc, would be greatful for something of that nature. I'm sure you've been there before, without many answers.

There were 150 views to this thread, as of today, and responses from about 5 people and information about one, 3 others telling me there is no use or referring to another site. While, no one is in any way obliged to comment or give their personal information, perhaps, this is one of the reasons, why research, treatements and possibly diagnosed tools are so far behind on ALS and it's relatives.
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
In my case Jamie it would take probably more than an hour of typing with an onscreen keyboard. It is just too tiring. I'll give you my phone number. Call me, it's easier. If you have ever looked at the site stats. (I think members have access) there is usually about 10 to 13% participation by members most months. So we have roughly 90% readers 10% talkers. It's not that no one is interested it's just that we have a shy bunch.
AL.
 

whitey

Member
Joined
Mar 5, 2006
Messages
19
illness progression

1/ Noticed i was getting itchy and tingly feet a lot, very sore feet, massive cramps in calves at night, had to walk them out. out of breath easily - sept. 2002

2/ woke up with very stiff neck,extreme right lower back pain, sore feet, neck, elbows, after golfing, would ice pack them after golfing, doctor said i had virus in my neck , thought i felt something bite me on golf course day before, may 1st 2003

3/ had fall on lower right back in gymnasium, next morning very sore, constipation started and heavy nausea and stomach pain, night sweats, lots of scalp acne, fell down at work twice from knees buckling, doctor scheduled a colonoscopy which was clear. also had ct scan of back done which showed degenerative disc disease, sent me for physical therapy on back - therapist said i had scoliosis too, jan. 15th 2004

4/ shortly after noticed i was stubbing my right foot into ground when walking, felt upper chest muscles pulling when i was walking, heavy sweating at night, drooling at night, dropping things out of hands, feet tingling, sinus infections, slurring my words or couldnt get proper words out of my mouth, burning sensations in middle of lower spine, massage therapist said lower back was very warm, went to neurologist who said my symptoms were too wide spread for ms.- feb. 2004

5/ had repeat sinus infections over next 2 winters, each time antibiotic cefuroxime would take away all my symptoms, march 2004/2005

6/ neck pain got worse, started getting cramping in hands and feet, fasisculations behind upper arms, hands would be numb in the morning cramped up like i was holding a tennis ball, right knee swelled up, fluid on knee and bakers cyst, mri showed nothing else, next neurologist said he wasnt convinced my problems were neurological in nature, he gave me an mri of neck-found herniated disc c4/c5, went to neuro muscular clinic, gave me emg, nurse said no ulnar nerve response behind right leg, doctor said i didnt have als, gave me medications for cramping and anxiety. may 2006

7/ noticed arms getting thinner, worse cramping, more fasisculations, lots of phlem in throat in morning, sinuses plugged in mornings, heavy bouts of nausea that comes and goes, had couple of incidences with losing control of my bowels, sometimes have food stuck in throat or periods of having difficulty with dry swallowing, tongue is white and yellowish with cuts in it, tongue fasics and atrophy at front of tongue, hoarse voice, slur words sometimes, hemrhoids and constipation comes and goes, vibration sensations through limbs, have had couple of bouts of extreme pain in different parts of my body, back, groin, neck, numbness of chin and lips, right foot when driving car goes numb, pain behind eyes sometimes, sores inside of cheeks, acne on face and scalp sometimes, now i get tremors of arms when i lift things, shake badly after exercising, feels like a big pulsating feeling going through my arms, neck, chest that gets worse as day goes on, lose balance easily, get out of breath very easily, physiatrist says i have chronic pain syndrome, allergist said i have fibromyalgia, going to clinic in london, ontario on may 8th, supposed to be top notch, think thats most of it- june2006/to present.

8/ have had tons of blood tests over the years, lyme negative twice, all std's negative, cefuroxime took away all my symptoms twice but no doctor will give it to me anymore because tests are negative.

9/ figure this one out jamie, lol
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
691
Country
US
State
NY
Whitey - a professor of mine suffered symptoms very similar to yours. She was diagnosed with dermatopolymyositis. Just a thought with all your skin and muscle symptoms combined. Please let us know what the clinic says, I will be very interested! Leslie
 

shannonme

Active member
Joined
Dec 14, 2006
Messages
34
Reason
CALS
Country
US
State
OR
response for my mom

) Symptomps prior to Dx
right foot dragging, fasciculations in arms and hands, hand weakness.

2) Were you mis-diag or was is suspected ALS from start
Not misdiagnosed. Probably waited to investigate when symptoms were too alarming to ignore.

3) Were you ever told, by the ALS clinic or the spec. that what you have "IS NOT" Als
No.

4) Vistits with Doctors (the important ones), pre diagnosed and post diagnosed
4

5) What people around you (friends / family / co workers) would tell you when you
started having problems...i.e. did they think you were crazy...etc.
Family and co-workers noticed. We didn't think she was crazy-- at least not for that reason!

6) How did it affect your home life / marriage.
Had to quit working immediately, moved out of 3rd story apt. and moved in with daughter.

7) What type do you have (Bulbar / LImb)
What are the concurrent symtopms and are there any unusual ALS Sypmtoms, like pain, numbmess, tongue hurting, chills, etc etc...
Limb onset, now unable to walk longer than a few feet with walker- using power chair, hand muscles are wasting- unable to use them for the most part, developing some bulbar symptoms. Catching a chill makes her more stiff, some leg pain at night, sweating profusely with exertion.

9) How crazy you think i am....LOL....Just joking on this one...gotta keep up the humor, but feel free to comment..
No comment!;-)

10) Treatments, when started and how they have worked. Should relate the treatement to symptoms if possible and their relief or failure.
Rilutek- doesn't seem to be working, recently started taking Creatine and Celebrex- unsure of the results, Baclofen relieves leg cramp pain, Vitamin E seems to be helping with stiffness in general. Paxil helps mood- dark days without it.
 
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