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Flip4it

Member
Joined
Jan 28, 2012
Messages
14
Reason
Learn about ALS
Country
US
State
Maryland
City
Myersville
Well I feel as though I'm in a toilet bowl spinning around. I have been tossed around by so many doctors, it's ridiculous at this point. My complaints to the doctor went on for at least a year that something was wrong with my hands..."my hands are weak". That same doctor/primary care physician (who is no longer my doctor!) kept telling me I had arthritis. Then he told me I had Sjogren's. Despite the fact that he told me "I didn't need to see a Rhuemotologist because I was in the early stages of Sjogrens", I went anyhow because my symptoms were becoming unbearable. After further testing, I don't have arthritis nor do I have Sjogrens. The Rheumotologist told me to go to a neuro asap. I was misdiagnosed and ignored for one year! I started to get worse last October. By November, I had to be put on short term disability because I was extremely weak and the weakness spread to my arms. Now it's in my legs. I look like a balloon that was deflated. I am so thin and my arms, hands, legs and shoulders are severely atrophied. For a two solid months, I had unbearable cramping in my legs with my arms plastered to my body because they were painfully rigid. Horrible tremors. I have no control of my fingers. I don't even look like the same person. Today, I fell down twice and I'm unable to go shopping without a wheelchair. I finally have an appt on Thursday to a Neuromuscular/ALS Clinic but am so angry that I have been tossed around until it's gotten to the point that Ray Charles could see there is something seriously wrong. I was literally ready to walk in the office naked and yell "Ya see something wrong here!" It just seems crazy that you literally have to be in a wheel chair and wasting away to nothing before you can get any sense of urgency. I'm preparing myself for the worst. I have fasciculations in all four limbs and my face now. I'm so sad. I'm only 49 and my son's dad died at 42. I really feel bad for my son. He's so stressed out and has watched me waste away in a very short period of time. God I pray this is something else. I go back and forth between crying and being angry.
 
flip4it, I am sorry you are feeling so frustrated. I hear you and understand your anger and frustration.

I have been fighting this for 2.5 years. I am still not OFFICIALLY given a final diagnosis- it was retracted because of my young age they keep running diagnostic and genetic tests for the time being. They will go back to ALS diagnosis in summer if they are unable to find anything else.

It wasn't until Fri that I was finally given a walker even though I was obviously in need to walking assistance. I have stated on many occasions that I should have literally crawled into the office saying that I can't walk anymore. Instead I had to come into the office with blue and black legs from falling on my patio and down the stairs to get the help I needed. As the saying goes...the squeaky wheel gets the grease...you have to be an advocate and fight to be given an answer!

Did you also tell the gp you believed you have atrophy and problems with legs as well...not just hands? I know it may sound silly, but if your gp wasn't that good in the first place then don't count on them 'noticing' your change in physical appearance. You have to point it out to them..show them the problems. Remember, they are only seeing you for 5-15 min. of a day...sometimes, as you are sitting there calmly...they don't understand the amount of hardship you endure everyday to make it through.

Anyway..I hope you take this oppurtunity to find strength within yourself to keep fighting for that answer. In the mean time...we are here for you and will help when we can. Good luck to you.
 
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