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daigs

Active member
Joined
Jan 28, 2013
Messages
33
Reason
PALS
Diagnosis
11/2012
Country
US
State
MA
City
Grafton
Isn't funny how there are some dates and times that will never leave your mind...lol. On Nov 14, 2012 at 2:30 I was diagnosed with ALS. It took 2 years and my ortho surgeon to help. I was told by 3 neurologists that it was in my head and to see a counselor or it was PMS, yes, they were male doctors. My ortho finally got me a great doc and I am now getting the proper treatment. But if these doctors took the time to do some simple tests maybe, just maybe I would not be as bad as I am now. I have lost some friends because I have a hard time walking and doing things, then I stop and realize they were not true friends and I smile at the ones that have stayed at my side. I am glad I found this site because there are a lot of times I need to vent! If I vent to my boyfriend or family they think I am getting depressed. They don't understand that sometimes, we just need to blow off steam, I mean I am still a woman and if I remember correctly we do that often..lol. Yes, humor helps me. Thank you all for being here, even if you are strangers,
Daigs
 
I'm sorry to hear you have ALS but glad you finally have answers and there are some great folks here willing to provide more answers when you have them.
 
I am not yet diagnosed with anything (I am seeing an ALS specialist Thursday), but one of the doctors I saw earlier in this process asked me if I was sexually abused as a child. So I totally hear ya with regard to the PMS comment. I mean, REALLY?
 
Hi, I'm undiagnosed yet.....I really can't understand how doctors can tell to a person that have als that it's all in her head, It's a shame that while you're fighting with symptoms you could be classified as an hypochondriac. It seems it has become a sort of habit: when doctors don't understand what's going on they start saying it's only stress, it's all in your head, it's only anxiety. I'm really sorry for your diagnosis and I understand your frustration during these 2 years as I'm in your same situation prior of the diagnosis. Here I have found really beautiful people, it's a good place.
 
I think everyone has been in that boat. It took 5 years to get my diagn osis. I went to the er once trying to pass kidney stones and was told I was ovulating! Take solace in the people here, they are the best and won't be strangers long. I wish you peace.
 
Welcome to our forum . it took most of us several years to get diagnosed . I had my first weakness show up the end of 2008, presumptive diagnosis in 2009 and definitive diagnosis in 2011. I told my neurologist that I thought he made the correct decision not to tell me until he was absolutely sure Mine is slow and each of us is unique. One day at a time and we are here for you .
 
Thank you all for your support. I'm going to be joining a local support group but it's great knowing support can be a click away. I was in the hospital yesterday, broke my right foot for the second time in a year. Worcester and Boston really need to fix their pot holes ...lol. I know take everything with s grain of salt and humor. It works for me right now and my 6year niece. My boyfriend and parents call me the weeble wobble but I'm the one that falls down....lol. Like I said, humor. I hope you all have a great weekend!
 
sorry to hear of your diagnosis. and your foot. glad you found the foruns.
Have you contacted your local ALS chapter yet? they have info on support groups, equipment
Humor helps a lot. My hubby is always crackin a joke about my walking, or scooter driving, or something.
 
It took me Over 4 and 1/2 years to get the diagnose since my progression was very slow. It was a shock but as most people probably knows you kinda already know that you have you just wish you didn't. Humor is the best thing .... I'm always joking but still allow myself time to cry and well mourn the losses
 
my diagnosis was fast once i decided to go to a doctor. my gp thought stroke but it was ruled out. i asked him if it might be a serious neurological problem, his reply oh not a chance. sent me to the neuro and rest is history. five months from gp to diagnosis blessed with slow progression and still beleive there are things you can do to extend life expectancy
 
When I first joined this site two years ago I was very anxious for answers.
Now, two years later, I have atrophied hands and arms and spastic legs and breathing issues, etc.

I'm of the mind that I don't want to know anymore. I don't even go to the doc unless I need refills on my meds. I guess I'm happier in limbo for now.

I'm so sorry for your diagnosed--hopefully, your progression will be slow. THere are many, many docs that treat women differently and assume it's somehow hysterical or depression or whatever. I almost died from a heart issue because I'm a woman and they assumed it was all in my head. It wasn't. I'd had a heart attack.

I've learned to not listen to my body--not to docs. Isn't that terrible?
 
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