how many already dx knew before doc told you?

jm1879 · 10-30-2009, 02:44 PM

Hi, I am a 43 yr old female with neurological symptoms for a few years. Some, such as swallowing issues and dragging my left foot and tripping over it and hand weakness i have had for maybe 2 or 3 years. I didn't think too much about them until last fall (oct 200

(why will it not let me type the number eight?) i began having extreme muscle weakness in legs and feet.

This has now progressed to a significant impairment and also for the past few months i also have muscle twitching, fasciculations, tremors.

I have seen many, many doctors and am finally seeing Dr. Vera Bril at Toronto General Hospital who has done nerve conduction and emg studies as well as some sensory studies. Due to some abnormalities (they haven't been more specific) she has ordered some very in depth lab testing which i am told will take up to 8 weeks for the results.

Needless to say i am stuck here in limbo not knowing but also most of the time really deep down knowing that something is seriously wrong.

How many people who have finally gotten a diagnosis feel like they really knew what was going on before the doctors told them?

Most of the time when researching my symptoms and on really bad days when i feel so weak i can barely take a deep breath or walk without the aid of crutches or walls i am convinced that it has to be als.

every couple of weeks i have a better day and think maybe it's just diabetic neuropathy or b12 or fibromyalgia.

waiting and hoping i don't have to get to know you lovely people better (no offense

)

Jackie

Zaphoon · 10-30-2009, 02:54 PM

I don't think very many people actually know they have ALS prior to diagnosis. Some probably suspect they may have it but most hope it is something more benign.

There are some who are convinced they have it but wind up with something else.

Zaphoon

Al · 10-30-2009, 03:37 PM

I knew it before diagnosis myself. I got a second opinion from Dr Bril. She thought it was MMN. I didn't like her lack of compassion so got sent to the ALS Clinic at Sunnybrook. They concluded ALS as did my first Neuro. I got a fourth opinion from a guy at St. Mikes. Can't think of the guy's name but he's like House but in Toronto. My own personal opinion is that Zinman at Sunnybrook is smarter than Bril. I'd see him for second opinion when the time comes.

AL.

cukita99 · 10-30-2009, 03:38 PM

i never even heard of ALS untill i was diagnosed. i was told after 3yrs of symptoms and being told it was all in my head that i had MS. then after i lost my speech completely another doctor said i had ALS. that's when i found this forum and learn to deal with it.

BethU · 10-30-2009, 06:13 PM

I went to the neuro clinic at UC Irvine to confirm a dx of MG. They did an EMG and told me it was ALS, and never even bothered with the MG blood tests they were scheduled to do. (I went ahead and had them done through my PCP later.)

Took me a while to accept it, as I was so sure I was off the hook. That didn't stop me from getting hysterical and sobbing all the way home. As soon as we got home, I jumped on the computer and checked out the cost of cremation. I wanted to know nothing more about ALS for a couple of weeks at least. I had refused to read about it or discuss it since the first neuro mentioned it as a possibility 2 years earlier.

Jackie ... I hope you don't have to get to know us better, too. Good luck!

jm1879 · 10-30-2009, 07:51 PM

thanks for all the responses...Al was it Dr Ho Ping Kong at Toronto Western? I've seen him as well and am waiting for the results of an abdominal and chest ct scan that he ordered.

i waited so so long to see any neurologist that i was quite happy to see Dr. Bril. I had read some less than flattering things about her bedside manner but found her and her staff to be very nice and professional. I did think she would have offered an opinion after she did the emg but she wanted me back for more testing and then after the results of those were abnormal she ordered bloodwork that will take almost two months to get results...

Al how did you go about getting to see the guy at Sunnybrook? Did your pcp send you there? did you all ready know of him?

i have seen so many doctors over the past year and most have been dead ends...my quality of life has deteriorated so much and no one seems to be able to tell me what is wrong or what (if anything) can be done.

Any suggestions from anyone would be more than appreciated.

Thanks, Jackie

silasbaby · 10-30-2009, 09:10 PM

Hi Jackie:

With my husband Mike- he started having issues Aug 07- losing his balance some. At that time it was just occasional. We got a doctor appt and they stated parkinsons and started him on medication for that. How-ever the symptoms were getting worse and Mike kept telling them something was not right. All they (IU Hosp) kept doing was increasing the medication. This went on for approx. 1yr and we started looking online- we knew it was not Parkinson's and suspected ALS from the symptoms. We switched doctors in Oct. 08 and at that first appt with new doctors asked Mike what he thought and he told them ALS. They told us at that point 95% correct. They ordered 2 more test that week and by the end of the week- yes 100% ALS and they made him take medical leave from work.
Sometimes looking online is bad- makes you sometimes think you have something you dont. How-ever in our case, he had all the symptoms. I just dont understand why the first doctors at IU Hosp. did not see it. They were so focused on Parkinson's.
Julie

jm1879 · 10-30-2009, 09:42 PM

Hi Julie, i am sorry that your husband ended up having als instead of parkinson's and it seems strange that he was misdiagnosed and no one would listen,

i have gone throught so much bs with doctors...it is just fibromyalgia, you are depressed, have some more anti depressants and pain meds.

6 months ago i after a clean emg i thought als was ruled out completely. i think it was a case of having the test done too soon. the fasciculations didn't start til shortly after and have continued to get worse along with the weakness and atrophy.

there are many things it still could be but als is back in the picture.

jackie

tajmom · 10-30-2009, 10:28 PM

By the time of my diagnosis I had been having symptoms for nearly 18 months. My GP, ortho and first (horrible) neurologist had no answers, but googling my symptoms (foot drop, weakness, dropping things, etc.) kept bringing me back to ALS. Finally went to a new neurologist who told me at my first visit that ALS was a possibility, but I spent a whole summer waiting for the results of some genetic test that would tell me whether it was MMN. So that summer I did my anger, bargaining, denial, etc. and by the time my neuro gave me the news I was not surprised. He got me up to Dr Rothstein at Hopkins two days later for a second opinion. I have to say that even though I already knew, when Rothstein told me I actually winced. I'm now grateful for having had that summer to mentally prepare myself, but you're never really ready to hear this diagnosis and the weeks after I got the "official" word were pretty awful.

Zaphoon · 10-31-2009, 12:25 AM

A friend of mine that is a nurse saw how stove up I was and suggested last year in the spring that I might have a neuropathy. When I asked her what that was, she said a neuropathy is something along the lines of MS. My sister that has had MS for over 20 years told me it didn't look anything like MS to her because what I have wasn't remitting.

I still think it's some weird pox that will one day clear up.

I'm still smiling! (albeit in perpetual denial)

Zaphoon

Danijela · 10-31-2009, 09:25 AM

Not a clue. We thought a trapped nerve. Emg tests, physical neurological exam and lab tests (ruling out other conditions) confirmed it. It was pretty straight forward.

halfin · 10-31-2009, 02:15 PM

In my case, ALS had been mentioned as a possibility, but I really didn't think I had it. My symptoms were so mild it seemed ridiculous to even consider it. Kind of like what Beth described, I was going in for a test that would distinguish whether MG or ALS was more likely, but before even doing the test they did a regular EMG and on that basis immediately diagnosed ALS. This was a complete shock to me, I had convinced myself that I didn't actually have anything wrong and it was all in my head. I actually felt guilty going in to the appointment, that I was wasting the doctor's time over such a small matter. I could hardly believe it when he made the diagnosis. In fact I am still doubtful some days.

Al · 10-31-2009, 02:42 PM

Hi Jackie. I think it was Dr Midroni that I saw at St Mikes in Toronto. Zinman was interning under Bril when I met him. My Neuro in Brampton got me the referral to Sunnybrook. Your GP may be able to do it as well. Dr Strong in London is good as is Dr. Turnbull at McMaster in Hamilton.

AL.

jm1879 · 10-31-2009, 03:38 PM

So it seems pretty evenly divided in those who knew or strongly suspected and those who were floored by the diagnosis.

Al, thanks for that great info...Hamilton is definitely closer for me so it is good to know that there is a decent doc closer to home...if i end up needing one.

jackie

RoadKill · 10-31-2009, 07:28 PM

I figured it out but was hoping beyond hope that I was wrong. Unfortunately, I was correct.

No more hope.