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gjbuddy

Member
Joined
Sep 11, 2013
Messages
15
Reason
PALS
Diagnosis
07/2013
Country
US
State
ohio
City
Cap City
Hello all,

I've been reading the posts on this forum for over a month now and decided to join in. I was diagnosed by a neurologist on July 17 but went for a second opinion with a really good doctor at Ohio State Medical Center - Dr. Kissel - and he said it's possible but is doing more tests. I'm still functioning well except my legs get very weak so I avoid anything with too much walking or steps. I have fallen once at home so that worries me. My husband and I are trying to cope the best we can and have decided to stay "normal" for as long as possible. I'm still going to work every day and doing a little around the house. He massages my legs nightly with coconut oil and I think that helps.
 
Hi GJ,

I hope Dr. Kissel gives you better news.

Sounds like you shoukd use a cane to help your weak gams, at least! Falls are dangerous for everyone, but especially PALS and of course the elderly. Your husband sounds like a gem! Glad massages are helping you. Please be careful with fatigue. Don't overdue it, because that will also contribute to falls.

When do you expect to have your second opinion?
 
gj,

Sorry your here. The forum can be a great comfort. Take the time to read and search, I find the info helps a lot with learning to cope with our new lifestyle!
 
I use a cane when I know I will be walking more than usual. I really try to limit my steps. I see the dr. again on Oct. 8. I had boat loads of blood work last week, two more MRIs next week and then another EMG. That should give the doc an answer. Maybe not the one we are looking for but at least we will know for sure. My husband has been very supportive. He has taken the lead with grocery shopping, cleaning, yard work, etc. It's just the two of us. He has a daughter that lives out of state but we never had children.
 
Welcome to the forum. I was diagnosed on Aug 5 by my local neuro. He said it is most likely ALS. All my test and blood work ruled out everything other diseases that resemble my symptoms. I've had 2 EMGs, MRI, and a spinal tap.

My symptoms started in my hands and have spread to my voice and legs.

I am going to Texas Neurology on September 19 to see an ALS specialist. I am getting another EMG and a 1 hour consultation with the doctor.

Do you think the cocunit oil works? I've read about people using that oil.

Tracy
 
Hello Tracy,

I read about the Coconut oil in the Deanna Protocol. We have been using it every day for about a month. My husband massages my legs every night. Currently only my legs are weak. Every other night he includes my arms and shoulders. I don't know that it works but it sure feels good! Apparently coconut oil gives the muscles and cells energy. That has not been proven.

My journey with docs started in June. My left leg was weak and I was having trouble climbing stairs as far back as 12/2012. I went to my chiropractor and massage therapist every other week for months. Both said it was a pinched nerve. When I wasn't getting better I got scared and started looking up my symptoms online. That's when I really got scared... my symptoms kept coming up ALS. In early June my family doc did an MRI on low back and wanted me to do PT. When he realized how upset I was about the ALS he sent me to my first Neurologist. He said it was ALS. Then I went to another neuro in his group and she said maybe it was. My boss got me in to see a well known and respected ALS neuro at Ohio State and he said maybe also. I've done lots of blood work and will have two more MRI's and EMG in a couple of weeks. I see the doctor again on Oct. 8 so maybe all the testing will give us an answer. Either way, my husband and I are planning for the worst and hoping for the best. That's all we can do.

Try the coconut oil... it can't hurt. You can purchase on line or at your local health food store. It's not expensive.

Good luck and God Bless.
GJ
 
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