JenniLee
Active member
- Joined
- Mar 19, 2007
- Messages
- 38
- Reason
- PALS
- Country
- US
- State
- CT
- City
- NORWICH
Hi everyone!
I was hopefull when I found this site; dedicated to this very subject.
I am a 37 year old mother of 2 young girls (6 & 5) who was just diagnosed with ALS Bulbar. I am so very scared and depressed. Today I have been more proactive than I've been in the 2 weeks since I saw the neurologist.
My friends and family say that I can "fight the fight" , but, I just feel so tired and sad. I had 3 teeth removed in July in prep. for inplant surgery. In Oct. my mother was going thru medical problems. My doctor prescribed "Trazodone" to help me sleep. I had such a terrible reaction to it the next day; dizziness, nausea, migraine, thumping in my ears. It eventually went away (actually, when I refused to take the med 3 days later). Within a few weeks my speech was slurred and then slowed. I thought it was my teeth.
In late December, I noticed my fingertips were weak ( couldn't tie balloons for my daughter's birthday) in my left hand. The funny ear thing from Oct. turned into a feeling of congestion between my ears, nose and throat; like I was all clogged up. I finally went to my AP and she said I had some inflammation in one ear, gave me clarinex and sent me on my way. I went back 2 weeks later, metioned the same thing, including my speech, and the weakness in my fingertips. The doctor did a neuro exam and found everything to be fine. She felt the speech would work out when my inplants were done, my fingers were probably a "pinched nerve", and I had ruptured a membrane in my ear that was "healing beautifully". Finally, I took my self to a neurologist and he did the diagnostic stuff; electo, and some blood work. In my follow-up, he sent to a specialist at another hospital, who, after reviewing my records and doing a few more test, came back and said, "I'm sorry, you have ALS". I fell apart while my husband talked to the doctor. The doctor made me feel like "here, Jen, here's a loaded gun...it will go off soon".......and then we left.
I will be going to Columbia in NY in April. I've been doing some relaxation, but can't get past the doom & gloom of that doctor. I want to be an optimist, but how?
Thank you for listening (reading).
Jen
I was hopefull when I found this site; dedicated to this very subject.
I am a 37 year old mother of 2 young girls (6 & 5) who was just diagnosed with ALS Bulbar. I am so very scared and depressed. Today I have been more proactive than I've been in the 2 weeks since I saw the neurologist.
My friends and family say that I can "fight the fight" , but, I just feel so tired and sad. I had 3 teeth removed in July in prep. for inplant surgery. In Oct. my mother was going thru medical problems. My doctor prescribed "Trazodone" to help me sleep. I had such a terrible reaction to it the next day; dizziness, nausea, migraine, thumping in my ears. It eventually went away (actually, when I refused to take the med 3 days later). Within a few weeks my speech was slurred and then slowed. I thought it was my teeth.
In late December, I noticed my fingertips were weak ( couldn't tie balloons for my daughter's birthday) in my left hand. The funny ear thing from Oct. turned into a feeling of congestion between my ears, nose and throat; like I was all clogged up. I finally went to my AP and she said I had some inflammation in one ear, gave me clarinex and sent me on my way. I went back 2 weeks later, metioned the same thing, including my speech, and the weakness in my fingertips. The doctor did a neuro exam and found everything to be fine. She felt the speech would work out when my inplants were done, my fingers were probably a "pinched nerve", and I had ruptured a membrane in my ear that was "healing beautifully". Finally, I took my self to a neurologist and he did the diagnostic stuff; electo, and some blood work. In my follow-up, he sent to a specialist at another hospital, who, after reviewing my records and doing a few more test, came back and said, "I'm sorry, you have ALS". I fell apart while my husband talked to the doctor. The doctor made me feel like "here, Jen, here's a loaded gun...it will go off soon".......and then we left.
I will be going to Columbia in NY in April. I've been doing some relaxation, but can't get past the doom & gloom of that doctor. I want to be an optimist, but how?
Thank you for listening (reading).
Jen