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Lorie

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First of all I would like to Thank Leslie for encouraging me to post about myself.

March 06, I started getting muscle twitches, at first it scared me and then I decided to ignore it. Until in July I started having a numbing sensation in my left leg with odd cold sometimes sharp pains. I went to my internal doctor, she sent me to the neuro. He did EMG and NVC test. There was abnormal readings with my nerves not as much in my mucles. I have had Brain, Neck abd Back MRI. I do have (which i've know) 18 degree scoliosis. They found a bone spur in my neck and a cyst on my lower spine. So I always deal with back and neck problems before now. So anyway, the Neuro. Says in Aug. 06. Peripheral Neuropathy. He then had no answer for the muscle twithces.
When I seen him last April 07, He said Peripheral Neuropathy with BFS to double or triple my meds. Yeah Right! I wouldn't even be able to walk around. Before Tim was able to be dia. what do you think they told him? Peripheral Neuropathy/BFS. Go figure! When I went to see the Neuro. the last time in April 07. I was going to put him on the road. I wasn't looking for ALS dia. and still not, but I know something is wrong. He put me on the road first and wanted to refer me to a Scientist/Specialist that studies underlying Neuromuscular Disorders. I said I would go when I felt like it. Well guess what? This morning I called the Neuro. and had them make my appt. It will be July 13th. In the last two weeks I started having bad cramps in my Legs, this morning I was twitching real bad in my left front shoulder blade, and the cramps started running down the same area. Yesterday my toe next to my big toe on my left foot, turned totally under. I couldn't straiten it out. Also, my finger and toes sometimes jump up and own on their own. But I still get up and get around. Bound and determined. But I know something is wrong. At the same time I can't dwell on it. With everthing else I would be in the nut house. There is no familial history. Tim was born two years before me. The genetic blood test cost about $500.00. I am scared to do that, my insurance may drop me as much as I go to the Doc. I also have Menieres's Disease with Tinnitus(loud pitch sound in the ears) and Vertigo caused by the Shingles Virus in my ear. I went through four major ear surgeries in 2002. (that like to have done me in,literally) I sound like a case don't I?

[I've come along way. No stopping me now. I do not dwell on it. I take one day at a time.

Like I tell Timothy, We have to have the will to live and a good attitude!(

(I don't tell Timothy much about my problems). He don't need that. He depends on me.


I am very lucky to have a wonderful supportive husband that supports me in everything I do.

Lorie:-D
 

vmd

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Thank you for sharing your story. If others think it is a good idea, I am planning to develop a checklist of symptoms for PALS and those of us waiting for a diagnosis (assuming such a survey has not been done on these boards before). I'll work on it next week. This would give us a good idea of the many types of symptoms and when we noticed these symptoms.
 

Jamiet

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Lorie,

Insurance companies cannot drop you once they take you, unless you don't pay the premium.

We're all freaking a little, all full of problems. We're here for you, vent all you need, support all you can.

Try to have a good weekend.

Rgds,

Jamie
 

Lorie

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I'm not freaking

I am Calm and Cool. :cool:


Lorie
 

CindyM

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Thanks for sharing your story Lorie. I hope when you go to the clinic is turns out to be something treatable! You and Tim are close but you don't need to be sharing the same horrid disease! :evil: Cindy
 

Beebe

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For ymd

Hi there, There is a thread that Jamiet started Symptoms ALS type diagnosed and progression. Go to the Subscribed Threads and you will find it there. This is a great idea if it keeps going. My Best to you, Beebe
 

ltr

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Lorie - I am glad you decided to have us support you not only as a caretaker, but for yourself as well. We have to be here for each other and you will get support from us. Take one step at a time, like you are. You need to take care of yourself too. Leslie
 

Lorie

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546
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Loved one DX
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Thanks To All Of You!

The one thing that gets me, is the Neuro. Dia. Me with Peripheral Neuropathy. I am definetely use to those symptoms. So I know I have that. The big problem for all of us is that before a Doc. Dia. BFS they are suppose to rule out these other diseases like ALS first.
But they don't! Because they can't. Everybody is different in there symptoms and progression.:confused:

It makes me:evil:

I can post a link for that.

Lorie

By the way I posted mine and tim's pic. on my profile. Not the best one!;)
 

vmd

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thanks beebee
 

ltr

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Lorie - You and Time are a great looking team! It's great for siblings to have such a close bond. Leslie
 

Lorie

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May 17, 2007
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Loved one DX
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Thank You

Thanks Georgia for the information. We all can use any info. we can get.

Thank all of you for your support!

Lorie:)
 
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