Survey - ALS Type and Sympt. - Dx - Progression

[Jamiet]

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 dx (or un-dx) 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 dx and post dx
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]

Jamie - are you looking just for members who have a definite dx 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]

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]

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]

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]

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]

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]

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]

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]

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]

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 dx tools are so far behind on ALS and it's relatives.

[Al]

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]

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]

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]

) 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 dx and post dx
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.

[Jamiet]

Whitney / Shannonme

Thanks! This is already getting interesting! We will find out how diverse or simliar we all are. I appreciate your participation.

I think, once i get, about 6 - 10 or so responses, i'll start to formulate some type of database or spreadsheet, then, it can almost be like a fill in form or so, and can make it a little more easily filled in / short and simple. This great...you guys have to excuse me, i'm a analysist guru.....



Thx,

Jamie

[Beebe]

Hi Jamie, Sometime ago there was talk about doing this but, it never happened . There is the one thread but not enough info. I will get the extra info from my daughter so I can do this properly. We thought about also what type of work , environment where you live we live a mile from a Power Plant. Any Traumas etc. Good idea.!!! Get back to you soon. Beebe

[tabney]

Jamie, I am interested in participating but will wait for the fill in form. That is a good idea and could possibly boost participation. I will be looking for your new thread.....
Toni

[JACKIEMAX]

i agree with al that it would take lots and lots of typing from all of us, but i can ans. a few. it took my husband months of tests, several diff. drs, and lots of frustrations to finally be diag. with als. also, one neurologist, the one that operated on him for a misdiagnosed spinal stenosis, laughed at us when we questioned his misdiagnosis, and senseless surgery, said if he had als, he would walk like ...... and at this point he walked across the room like frankenstein, to show us what als would look like.

if you'll find my name and go back and read some of my postings, i think you'll find lots of info for your data.

jackiemax

[ltr]

Jackiemax - I had a weirdo neuro like that once! And Beebe - the environment thought is very interesting. I live in a small neighborhood with many retired age folks. I have lived here for 16 years, but right away I started noticing - my next door neighbor went for a checkup, found out he had cancer and died within 6 months, my neighbor across the street had cancer, 2 women next door from him had cancer, the man at the end of the street died from cancer. The problem is only a couple of them were the same kind of cancer, so the health dept. (my mom called) said it was impossible for them to be linked. At the end of our street there is a "power box". Interesting huh?!

[Bev]

Being new, I find this idea so helpful, totally interesting and important. I will also wait for a form. I would think that it would make it so much easier to untangle.

[zac111]

hey ltr i had the same symtoms as you but mine have been for the last 5 years heart rate and bp would go up all thopse things that you mentioned.

[pye101]

I'm really new to this forum but would like to participate in this survey. I'll have to try and reconstruct my husband's earliest symptoms from 2002, but hopefully they will help in diagnostics.

I was wondering if anyone here had been exposed to organophosphates, prior to developing symptoms? My husband worked with commercial pesticides and fungicides. His neurologist tested him for exposure and the tests were positive. I'm still convinced, regardless of the other medical opinions we received, that his disease onset was precipitated by chronic, low dose, exposure to Dursban (chlorpyrifos).

John passed away in September of 2005 and I miss him and his great sense of humor, dignity and strength of character. My prayer is that we can find the answer to this horrible disease and eradicate it forever.

I wish I had known about this site, while John was ill. He would have enjoyed sharing information and talking with you all.

Thanks for being here,
Susan

[ltr]

Susan - I am so sorry for the loss of your husband and all the two of you went through. I have to agree 100% with you that your husband's symptoms were caused by organophosphates. A little paranoia here, but I think our gov. likes to cover up this stuff. I know, everybody, it sounds weird, but think about it, it could be true.

[patricia1]

I am sure my symptoms all started after a tetnus shot. pat

[ltr]

Zac - keep me informed of what you find out and I will do the same! Leslie

[Paty]

Hi Susan:

I am almost positive my husband's A.L.S. had to do with him being a duster pilot, applying ORGANOPHOSPATES (Pesticides), Herbicides, for 23 yrs.
He quit in 2000 and started a Commercial Flying School (He also had the Commercial Pilot's License), in 2005 he started with A.L.S. symptoms.

Paty
Husband's Caregiver Dx10-17-05
Baja California, Mexico

P.S. I ALREADY ANSWERED THE PESTICIDES THREAD ABOUT MY FEELINGS ON ORGANOPHOSPATES.

[pye101]

Hi again all - speaking of the government........I have a good friend whose husband was in Viet Nam and suffered an exposure to Agent Orange. He now has MS and, after ten years of fighting governmental refusal to accept responsibility - they finally agreed and he is able to receive all his care from the VA.

In John's case, I found that the government makes it impossible for anyone to sue Dow Chemical company, because of toxin exposure and resulting illness. Isn't that strange???

We were unable to even receive any worker's compensation benefits for John, because the insurance carrier fought us and insisted that ALS is a naturally occurring disease process and there was no actual proof that he developed it from organophosphate exposure at work.

Thank you so much for your kindness. I miss him like crazy and will never give up my fight to try and prove some connection between toxin exposure and development of neuromuscular disease. It's the only way I can feel as though I may be able to make some kind of difference and his loss will not be simply an "occurrence" on somebody's statistical analysis sheet.

hugs to you all,
Susan

[pye101]

This answer would be so much better coming from John, as my memory is a little foggy about what his complaints were back in 2002. But, here goes.....

1) Symptomps prior to Dx

I believe his first symptom was weakness in his right thumb and a lessening of his grip strength in his right hand. Slight slurring of his speech was what caused me to insist that he see a doctor. This was about two months after he was having problems with his thumb. I believe he also had some leg cramping, but I'm not sure about this.....

2) Were you mis-diag or was is suspected ALS from start

His PCP referred him to neurologists who dealt primarily with stroke patients. They did diagnostic testing and, although did not directly diagnose ALS - that was what they thought it might be. They referred him on to the neurologist who diagnosed him with organophosphate poisoning and the ensuing neurological involvement.....

3) Were you ever told, by the ALS clinic or the spec. that what you have "IS NOT" Als

John's neurologist did not feel that what he had was actually ALS, but was very similar in symptoms. He honestly did not believe that John's neurological problems were ALS and never did feel this. He still feels that John died because he received no real treatment and simply got palliative care.

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

Not sure of the actual number.....quite a few though.....

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.

Everyone was supportive. Probably because he had a presumptive diagnosis from the very beginning.....

6) How did it affect your home life / marriage.

Can't say how it affected his views of our marriage. I was in some kind of state of shock and absolute terror, after the first diagnosis. Still have some leftover mental numbness, even after all these years. Think I became over protective and hovered too much - which he absolutely hated. Sometimes I would go sit on the floor at night and just watch him sleep and listen to him snore. It gave me assurances that he was okay. In our case, it caused us to not take anything for granted. We were closer than ever before and I thought we always had a close marriage. I still feel as though I'm only half a person.....

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...

He had both. Don't ever remember him complaining of any pain at all, throughout the entire duration of his illness.

9) How crazy you think i am....LOL....Just joking on this one...gotta keep up the humor, but feel free to comment..

Maybe I can comment on this one, once I get to know you better. I'll have to rely on the comments of those who do, right now. Hmmmmmm - aren't we all just a little crazy?????

10) Treatments, when started and how they have worked. Should relate the treatement to symptoms if possible and their relief or failure.

John never received any treatments, because we had no insurance at all. We had to fight every inch of the way and it just seemed that nobody, except me, cared about him.....this still breaks my heart.......

[Jamiet]

it would be a great tool, to even tually tag for the "is this ALS column", once there is a good history of people here. Newbies could read this.

Rgds,

Jamie

[Wes_E]

August 05, Playa Guiones Costa Rica. I was surfing with a buddy and I was having problems getting to me feet. First time it ever happened in 27 tears of surfing. About a month later I developed a slur and started getting weird cramps in my neck. My first Neuro ordered MRI/MRA, EMG, blood work and found nothing. Slur was getting worse and I noticed the muscles in my arms and back were twitching. It was my ENT that suggested a different neuro. The original didn't have a clue and said there was nothing wrong with me. My ENT noticed my tongue was vasciculating and suggested his friend at Baylor college of medicine here in Houston. Another round of MRI, EMG and biopsy. 1 year later, August 30 2006, my 44th birthday I was officially DX with ALS. ANyone see the irony?:-D

My anger and frustration grows daily. Still pretty healthy but there are noticeable changes. Talking is very difficult, some atrophy in my left foot, cramps in my hands and arms. I'll probably be forced to retire w/i the year from a career I love. Going to pack my surfboards and head to Costa Rica for as long as I can.

[Al]

Hey Wes. Welcome but sorry you have to be here. Two things you learn here. Do what you can while you still can and keep a positive attitude. If you can do that it will help you cope. It's not easy all the time but it can be done. We're here for you.
AL.

[papaw50]

1) symptoms prior to dx - hand weakness, twitching on arms, hand, shoulders, weakness in shoulders
2) als suspect from the start. First local neuro done EMG/nerve conduction test, all different kinds of blood tests to rule out other diseases. After all blood work came back negative, was referred to ALS clinic in Morgantown, WV and was given a definitely dx of ALS. Went for a 2nd opinion in Pittsburg, PA - same dx. Based on emg/nerve conduction and symptoms.
3)no
4) pre dx - about 3 or 4. Post dx - we go to the als clinic every 4 months
5) Everyone has been very supportive. Most of our friends/family had never heard of ALS so we've had to give lots of details and explanations.
6) it has brought us closer together as a family. Not a one of us have a promise of tomorrow, so we should never put off doing important things. But, once you're given a dx of a terminal illness, you start doing all the things you put off.
7) arms/shoulders/hands are weak. LOTS of twitching. lot less stamina than before. Some trouble swallowing
10) treatments - organic foods, herbs and vitamins. POSTIVE attitude.

[jimercat]

posting for husband:

1. Symptoms prior to dx-
Clumsiness: broke both feet at the same time, six months later broke leg
Swallowing difficulty: hospitalized - could not swallow saliva
Twitching beginning in left hand/forearm
Weakness in left hand
Slurred speech at times

2. ALS suspected and dxd from the start.

3. Always told it was ALS.

4. General Practitioner suspected a neurological problem/recommended a neurologist
First neurologist dxd ALS
Second neuro confirmed ALS
ALS Clinic confirmed ALS

5. Customers complained that he sounded drunk over the phone.
Co-workers began to have difficulty understanding his speech.
His family felt there was nothing seriously wrong with him.

6. This dx has been devastating to us as immediate family. The range of emotions that we as husband and wife go thru every day while trying to still live our life as normally as possible is difficult to describe. Trying to plan ahead for whatever may be around the corner is also difficult. The long term dreams we may have had certainly have changed.

7. Dxd with Bulbar onset.

8. Concurrent symptoms include pain with spasms, recurrent pain in right knee, cramps, twitching which has progressed to other side of body in upper limbs - do not take anything for these symptoms. Deep creases in face with excessive oiliness, increased saliva production, muscle atrophy in upper limbs and trunk/butt - do not take anything for these symptoms. Weight loss - gained it back by eating higher fat foods. Sleeplessness - taking Ambien to treat this (works great, just don't take it and try to stay awake or I guarantee you will act like a lunatic). Swallowing and chewing issues - don't take anything for these. Gaited walk - not using cane yet.

Would like to add that if you over exert yourself, you will pay for it!

thx

CJ

[cheryilyn]

1) Symptomps prior to Dx
I started with asthma like symptoms in May 05. During the summer I started having problems swallowing my meds I still thought allergies. By Sept the left side of my face was drooping. My PC thought I had Bells Palsy. By Jan 06 I was getting hard to understand. By may I was no longer able to talk.

2) Were you mis-diag or was is suspected ALS from start
Bells Palsy

3) Were you ever told, by the ALS clinic or the spec. that what you have "IS NOT" Als
The neuro that I was referred to told us it was not Als and if my MRI came back normal not to worry about it.

4) Vistits with Doctors (the important ones), pre dx and post dx
PC several visits, ear, nose and throat specilists 2 visits, neuro 2 visits and then she referred me to an ALS clinic where I got a Dx and have been going to since.

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.
No they were all very supportive. My brother-in-law passed away from ALS 5 years prior to my diagnosis. We grew up together he was my brothers best friend and his sister was mine so we all spent a lot of time together.

6) How did it affect your home life / marriage.
My family is all split up because of my illness. We lost insurance in March 06 and the only way I could get insurance was for me to take our daughters and leave. Right now I am at my mothers and my husband is here now, but my 17 year old is staying with friends so she can stay in her school and my 14 year old is living in yet another town with my oldest daughter cause there is not enough room at grandmas. We are in the process of looking for a house that will work for me and moving the girls back home.
7) What type do you have (Bulbar / LImb)
Bulba onset

8) What are the concurrent symtopms and are there any unusual ALS Sypmtoms, like pain, numbmess, tongue hurting, chills, etc etc...
trouble swallowing, no voice, In a powerchair fulltime I can walk a few steps with a walker. and am losing use of my left arm. I have a lot of pain in my hips, sholders and neck. My tongue only hurts because I bite it every time I sneeze.

9) How crazy you think i am....LOL....Just joking on this one...gotta keep up the humor, but feel free to comment..
I don't know you well enough to comment on this one but I think a little craziness helps us get through this.

10) Treatments, when started and how they have worked. Should relate the treatement to symptoms if possible and their relief or failure.
Rilutek Oct 06 don't know if it is helping or not. Baclofin Sept 06 helped to begin with but I think I probably need to increase it. Zoloft sept 06 for depression, it helps. feeding tube nov 06. Leg braces Jan 07. Merc, II for talking may 07 power chair June 07