May I Ask How Each Of You Were Dx'ed?

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Unknown

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Hi,

I am so terribly sorry for each of you.........I am going through some bad times now & am being bounced around (Haven't gotten a diagnosed yet) & Praying I wont.

Can I ask what symptoms & how you were diagnosed'ed if you wouldnt mind. How old you were & how long you've had it. It doesnt have to be so long. Just trying to put peices together for my own sanity, although I think Im losing it all together, as all I do now is cry. :-(

Thx & God Bless.............You all seem so strong
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi Unknown, I am so sorry you're going through this bad time, and I hope that whatever is happening turns out not to be ALS. I went through this dread when they first presented the idea to me ... it was unthinkable, and I cried for many days.

Here's my stats: I'm (almost) 73. Have had bulbar-onset for 2 years 9 months. I was diagnosed in May 2008 after three other wrong diagnoses. (first, stroke, then Progressive Supranuclear Palsy, then Myasthenia Gravis).

My symptoms started in March 06 with slurred speech after surgery. Swallowing problems started about 9 months later. My speech has continued to deteriorate and it's pretty much kaput now.

I first noticed arm and hand weaknesses this last summer, and that continues progressing, with atrophy showing up in both forearms and hands. Also am experiencing more shortness of breath. But I still can drive and manage most things of daily life, although with some difficulties.

I lost 24 pounds up to my diagnosis, but have regained 10 pounds since then.

Please note: every case is different, and bulbar-onset and limb onset are especially different. The worst part of ALS in my experience is that period when you are first dreading that you have it. If it should turn out that you do have this, you will find that it becomes a problem of managing it. You have to relearn ways of doing things that you have taken for granted all your life, and there are many frustrations ... but you can live for years and enjoy life. Really.

I'm hoping and praying that you do not have ALS ... but whether it is or not, we're here.

Hang in there.
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Mine was much quicker than Beth...I first started to notice slurred speach and swallowing problems in Jan 08...thought it was all too silly to see the doctor about...my odd feeling tongue...but went at the end of March. GP immediately suspected bulbar onset, then saw neuro next day...who again immediately said he thought it was bulbar...I did not notice ANY weakness at that time although neuro said I had some. Had all the tests within about 10 days, and emg came back positive of bulbar onset by mid April...started to take Riluzole immediately which reduced the now DREADFUL twitchings...Now some 7 months later, speech is terrible, although family mostly understand me...legs are bad, cant go upstairs too well, but insist on pushing my wheelchair whenever possible and wont ride in it. Ok walking around indoors unless I fall over...cant get up unless there is something very sturdy to pull on.
 

MarianneS

Active member
Joined
Jun 8, 2008
Messages
64
Reason
PALS
Diagnosis
06/2008
Country
US
State
ma
City
lexington
I'm 53, oops 54 my birthday was last week. I started noticing slurred speech late fall of 2007. Had the flu in late March 2008 and started having choking spells. Saw the Otolarangologist the first of June who suspected ALS and sent me to nuerologist two days later who confirmed it. Mine is bulbar onset and my speech is very weak getting harder to understand. Eating is becoming a chore but I have a glass or two of wine to wake up my appetite. I am still doing all the things I have always done as a homemaker but do get tired.

When my speech started to slur I suspected it was ALS as my Mother developed it at age 86. The SOD1 test came back negative but the doctor still feels it's familial.

I hope are not one of us PALS, but if it turns out to be, this is a wonderful place for understanding, knowledge and accpetance.
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
hey there Unknown,

My stats are like this:

My sister told me I sounded drunk on the telephone one night in Nov. or Dec 07. Our oldest brother was diagnosed with bulbar onset ALS in 2003, so I thought, could it be?

Didn't think much more about it until Jan or Feb 08, got choked a few times, speech seemed really slurred. Went for a pulmo check-up for sleep apnea that I've had for 5 or 6 yrs and he noticed my speech.

Had a modified barium swallow, a video stroboscopy, labs done for myasthenia gravis, antiphospholipid syndrome, lupus, had MRI of my brain, CT cervical spine, cervical myelogram-all of these tests were done from about mid March 08 until first of May 08.

Pulmo got me in with a neuro at IU on 6/3/08, talked to him for about 2 hrs, and his clinical impression was bulbar onset ALS. Went to my first ALS clinic on 7/1/08. Went to my second ALS clinic on 11/4/08.

Oh, and, I'm 48, married to a wonderful retired fireman, our boys are 18,15 and 7. I am a registered nurse, still working 3-4 days each week in a doctors' practice, still driving, still eating, still walking any where I want to, haven't lost a bunch of weight ( hence, the still eating part ), try very hard to remain positive and be a role model for my boys. And the best part, I finished college TONIGHT- I am very proud to say I now have my bachelor's degree in nursing!

I pray that you are doing well tonight, and that you don't have ALS,
please keep us posted,
Never give up,
Never let up,
Never lose faith,
brenda
 

SteveS

Active member
Joined
Sep 23, 2008
Messages
98
Reason
Loved one DX
Diagnosis
11/2008
Country
CA
State
BC
City
Campbell River
The wifes problems started in Nov of 07. Weakness in legs and had issues with walking long distances, stairs and getting up after squatting etc. By Dec of 07 was using a cane due to balance issues. By Jan 08 was falling and spraining ankles and using crutches. By Feb of 08 was off work and using a walker. By May of 08 was using a wheelchair. During this period had been going to Neurologist for multiple MRI's, CT Scans. Had many EMG's and every blood test he could possibly think of. Had a couple of diagnosis like GBS and CIDP but due to the progression and other symptoms and a visit with one of the top GBS/CIDP doctors in BC that was ruled out. After a few more MRI's and a muscle biopsy by one of the top ALS specialists available in Vancouver we were given the diagnosis of limb onset ALS a week ago last wed. We are truly hoping that with limb onset and the fact that the upper body is still very strong and no breathing, swallowing and speaking issues that it will now somewhat slow down compared to how fast it progressed to our current condition.
 

SteveS

Active member
Joined
Sep 23, 2008
Messages
98
Reason
Loved one DX
Diagnosis
11/2008
Country
CA
State
BC
City
Campbell River
The wifes problems started in Nov of 07. Weakness in legs and had issues with walking long distances, stairs and getting up after squatting etc. By Dec of 07 was using a cane due to balance issues. By Jan 08 was falling and spraining ankles and using crutches. By Feb of 08 was off work and using a walker. By May of 08 was using a wheelchair. During this period had been going to Neurologist for multiple MRI's, CT Scans. Had many EMG's and every blood test he could possibly think of. Had a couple of diagnosis like GBS and CIDP but due to the progression and other symptoms and a visit with one of the top GBS/CIDP doctors in BC that was ruled out. After a few more MRI's and a muscle biopsy by one of the top ALS specialists available in Vancouver we were given the diagnosis of limb onset ALS a week ago last wed. We are truly hoping that with limb onset and the fact that the upper body is still very strong and no breathing, swallowing and speaking issues that it will now somewhat slow down compared to how fast it progressed to our current condition. I should also mention Micheline is just 37 and will be 38 in January.
 

kylisa

Distinguished member
Joined
Feb 11, 2008
Messages
195
Reason
Lost a loved one
Country
US
State
KY
City
Stanford
My mother's diagnosed

In late April of 2007, my mother was playing ball with my sister's kids. She fell. She thought she twisted her ankle but there was no pain or swelling. By late May 2007, She was dragging her left foot. Finally, in July 2007, she agreed to go to a neurologist. He did numerous tests. He could not give us a diagnosed. In Nov 2007, at one point, he even went as far to tell us we were imagining things. I got my own doctor to refer her to a neurosurgeon at a major hospital here in KY. Finally, in Feb 2008, she got her diagnosis. Her very first outward symptom was a drop foot but, the bulbar region has been the most affected to date. She no longer eats or drinks by mouth. She has a peg. She has started having breathing problems when she lays down and sleeps. She is fighting using the wedge for sleeping. She has no bi-pap and has said she doesn't want one. Time will tell. My mother was 65 years old when diagnosed
 

mysticunicorn66

Distinguished member
Joined
Nov 20, 2008
Messages
241
Reason
Loved one DX
Country
US
State
MD
City
Allegany County
Hi Unknown!
My father-in-law was just recently diagnosed with MND. He is 65. We figure that his troubles started about a year and a half ago with twitching in his right arm. he had some other issues also going on that masked some of the other symptoms. In the meantime, he has had CAT scans because they initially thought it was a stroke or MS, then Xrays on head, nerve conduction tests, EMG, blood work galore. About 8 months ago, he started having breathing issues. PC dr thought it was COPD and put him on meds for that. We tried several different meds, but none improved the breathing issues. Then started the problems with his walking, when they ran the nerve condtion tests, EMG and a ton of bloodwork. Then he started having breathing problems and swallowing problems and his one arm is wasting away and getting very weak. We just got tired of getting the runaround, so we told them that he had a neurological problem and that we needed to find out what it is. Finally, different neuro dr ran muscle biopsy on him and went through the battery of other tests and told us he has MND. He is still eating by mouth, but we have to be careful and make sure he doesn't choke when eating. He is walking a little, but not very far, with a cane. He uses a walker for longer distances, but has to take breaks because he gets winded easily. He is also on O2 to help with breathing issues.
 
Joined
Oct 9, 2008
Messages
14
Reason
PALS
Diagnosis
06/2008
Country
UK
State
ARMAGH
City
ARMAGH Northern Ireland
Hi . Im 32 years old and was diagnosed in June 08. I first noticed back in October 07 when on a golfing holiday in Spain after I had had a few beers my speech became very slurred and my friends couldnt understand me. So I cut down on the booze thinking this was the problem but it gradually crept into day to day life and after seeing my GP twice on the second occassion he sent me to see a neuro in May 08 whom sent me for MRI, blood tests, a lumber puncture and test that recorded my twitching (cant remember what it was called). At this stage I was still going to the gym and working fine. But at te end of June 08 the neuro was pretty sure that I had MND but did a few more retests and called me back in in September for the full diagnoses which I was well prepared for as he indicated in June that he was 80% sure it was MND. My neuro has sent me for a second opinion which will happen in December as he finds it strange Iam so young. My speech is pretty poor and also my walking as my balance seem to have become dodgey but Im just about free from any walking aids at the minute I have also quit work. I feel one of the things that knocked me for six was getting the diagnoses from the nuero as I was not prepared it and then I was very upset which in my opinion speeds up this bloody disease. Remember I live in Ireland and Iam quite young so that was and is the reason it is taking so long.
Stay positive and never give up.
 

dsiple

Active member
Joined
Nov 14, 2008
Messages
80
Reason
PALS
Diagnosis
12/2003
Country
US
State
pa
City
Punxsutawney
My diagnosis

Unknown,

I was pulled aside at work and asked if I was feeling okay or if I had been hitting the sauce at work because my voice was slow and slurred. the one guy I worked with was an EMT and thought I might have had a stroke, so I went to a neuro and the rest is history. My wife thought I was goofing around with my voice and don't think much of it until I told her about what happened at work. Countless doctors, tests, blood tests, and misdiagnoses, here I am a member of an elite group of people that, no offense, I wish I never met, but here I am.

The important thing is to keep a positive attitude. This disease may have taken my strength and speech, but it can not take my spirit.

Thanks
Duane c
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
Duane,
You got that right!
I might have ALS, but it damn sure doesn't have me!

Keep up the fight,
take care,
brenda
 

Bucket

New member
Joined
Aug 4, 2008
Messages
7
Reason
PALS
Diagnosis
05/2008
Country
US
State
TX
City
HOUSTON
Hi
About August 2207 I started to sound very drunk after only one beer. I thought this strange but I ignored it and continued on. In sept I noticed I was losing the strength in my right hand and started having muscle twitches all over. I went to the dr. and was told it probably was my diabeties. By oct I was noticing muscle loss in that hand. I did a brain and cervical MRI and was told that they were normal. By Feb. 2008 I had lost muscle mass all over and I was having breathing problems. After Googling probable diagnosis i to a nerologist for a emt. After another round of tests the diagnosed of MND probable bulbar onset was given in may. I spent to much time closing out my business and did not get help soon enough. In oct I went into respiratory arrest and wound up in the Hospital with a PEG and a Trach. I am still in the Rehab trying to get weaned off the vent.
The Moral of this sad story is don't mess around. Get help. They may not be able to cure it but if they can keep you out of places like this it is well worth the trouble.









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anneinma

Active member
Joined
Aug 6, 2007
Messages
66
Reason
PALS
Country
US
State
MA
City
barnstable
My dear husband started slowing down in April 07. I remember we almost missed a flight because he couldn't walk the distance. Gradually he began getting weaker, having breathing problems and lost 40 pounds of mostly muscle. His hands began losing strength. He fell a couple of times. He began using the Bi Pap all night every night but was having panic attacks.

In April 08 we went on a vacation. My husband used a wheelchair for the trip. Two days after we returned he stopped breathing. He told me that day that he would not be walkign much longer.

I truly hope that they find something else. There are many things that cause these problems. Be sure they check for Lyme disease which is curable.
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
My partner was a healthy 40 year old playing a guitar when he noticed that he could not press the strings to play the chords as he used to. This was around Dec 07. Weakness in of the left hand continued throughout spring 08, dismissed by our GP who told him to do some hand exercises using a soft ball. By May 08 there was a noticeable muscle loss between the thumb and forefinger (left hand) and noticeable muscle loss across the hand by July 08. Appointment with a neurologist in August 08 included physical examination. Sept/Oct 08 EMGs (abnormal), needle conduction tests (all twice) and blood tests. Diagnosed November 08 with limb onset ALS. It seems straight forward considering some of the other stories I have read. And yes, no pain, no tingling, no complaints about twitching, cramping etc. Legs fine, no weakness, no tripping. Breathing fine (we go hill walking). Post diagnosis I started to think that his speech is slurred but this may just be me fearing its onset as he was always a bit of a mumbler (I notice this more readily as English is not my first language and I always found him harder to understand than some other native English speakers). The only other symptom I recall was tiredness, but that has been going for many many years (he could always fall asleep within seconds).
 
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