ALS/MND Support Group Forums - View Single Post - how many already dx knew before doc told you?

silasbaby · 10-30-2009, 08:10 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

10-30-2009, 08:10 PM	#7 (permalink)
silasbaby New Member (Say Hi) Registered Member Join Date: 2008 City: Mooresville State: Indiana Country: US Diagnosed: 11/2008 Posts: 15	Re: how many already dx knew before doc told you? 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