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Wjjsb

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Hi! I am new to this site and have been looking for a group for support other than my family. I have read all of the stickys' pertaining to ALS. I guess I am here to hear other stories similar to mine.
I started noticing my symptoms 3 yrs ago after the birth of my daughter. They were so mild but yet bothersome. I was tired all the time and I blamed that on having a new baby in the house. I didn't think much of it. Shortly after that I noticed that I was getting weaker, not being able to stand as long or open a pop bottle as easily. I went to the doctor about it but he didn't seem that alarmed. He agreed that I was just exhausted from having a baby. This went on for about two years.
About a year ago, I had to quit work because it seems that I couldn't get enough rest and thought if I stayed home I would improve. Actually, the opposite happened. I was getting muscle tightness in my right leg and my hands seemed to be stiff all the time. So I went to a doc and was tested for everything under the sun. Most test came back normal except my EMG. The neurologist said I have a form of neuropathy but wanted to do further testing. He prescribed neurontin to help with the pain I was having.
Presently, I was referred to the Cleveland Clinic neurological department. They did a lot of blood test which came back normal except my white blood count was a little high but that could be my body may have been fighting an infection and I didn't know about. Recently, my speech has become thick and slurred. So I went to a voice specialist who has informed me that it was not my voice box but bulbar fistculations ? Not sure of spelling. She also said that my tongue twitches when I stick it out. Surprised by this, I went back to Cleveland Clinic and they ordered additional tests.....they told me that I may have ALS or cancer. They also told me that whatever it was it was a rare form since it has been difficult to diagnosed. I also had a skin biopsy and was told that the results would take 2 weeks. I called after 2 weeks and the doc told me that something showed up on the biopsy but he sent it for additional testing that would take 4 more weeks! Ugh! This waiting is not fun! I am currently walking with a walker since this seems to affect both legs now and have trouble getting in and out of bed and etc.
I was wondering what you guys thought......thank you so much for reading this!
Wendi
 

Tokahfang

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The waiting does end, but it does take a good bit of perseverance to get to that end. Keep up the good fight Wendi, and keep enjoying life as much as you are able.
 

JustTrying

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:( limbo stinks. I understand wanting support while you go through the diagnostic process. It helps to talk to people. I am in limbo but have an appt on july 9th at an als clinic. Whatever you have, it seems like a slow progression, so that's good. Hang in there
 

Wjjsb

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Jun 28, 2013
Messages
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Reason
Learn about ALS
Country
US
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Pennsylvania
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Mercer
Thank you both for the encouragement! It is so so good to hear that I am not alone with this thing and others have gone through it!
 
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