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ltr

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Hi everybody,

I was hoping maybe some of you could read my post and try to give me advise. I have been struggling for 15 months to be diagnosed and don't even have a follow-up with a doctor as of now! It started l11/5/05 when I felt this electrical type shooting in my head, my heart rate quickly went up and stayed in the 150's for quite awhile. This happened many more times for several months. I had cardiology workup and went for a cardiac ablation. My heart rate went to 300 bpm when given the adrenalin and there was nothing to ablate!. To make a very long, very horrific story short, I now have fasciculations that look as if a bag of microwave popcorn is popping under my skin. They started in my legs and have moved to ribs and arms, now hands and occasionally face. I have incredible leg weakness, but mostly right side with right arm now added to it. I am extremely exhausted and have terrible muscle cramps. I have trouble sleeping at night with vibrations, twitching and weakness. I have had an extensive workup to include an abnormal 24 hour urine with high norepinephrine for which I was diagnosed with pheochromocytoma (didn't have), then they thought MS (MRI normal), then fibromyalgia (crock). Now, I have no follow-up, can barely leave the house and am growing weaker by the day. I am 43 and a single mother of 3 school age children. I cry almost everyday because my good intuition knows I have a debilitating disease. I live in a crappy little Upstate NY town and have only seen a NP in neurology, never the neurologist. I did have an EMG at the very beginning of this, which was normal, though the NP noted decreased muscle tone and clonus in my right leg on exam. I hate to burden the readers out there and I know you can't diagnose me, but I am so scared and alone. My friends have all disappeared and I have very little family. I have tried to make an appointment at Upstate Medical in Syracuse, about 2 hours away, but so far insurance co. is giving me a hard time. Anyway, thanks for listening.
 

CindyM

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Good morning LTR. This is a lot to go through alone. Hopefully what family you have is nearby. A lot of folks on this fourm are bothered by fasciculations but I for one have grown used to them. My Doc did prescribe Quinine for cramps, which helps a good deal. I sleep better with it, for one thing. Getting a DX for any nerve and/or muscular disease is very time consuming. You may need something for anxiety while you wait. Just a thought...Cindy
 

ltr

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Anxiety

Thanks Cindy. You're right about anxiety. I do have a rx for Xanax and take that when I have to. It helps me get to sleep, but takes quite awhile. I would do anything to go back to my life 15 months ago! Leslie
 

liz

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Hi ltr -

Don't worry about burdening anybody here - that's why this forum exists.

Hope your not living up on the Tug Hill Plateau. How would you get yourself dug out from under a mess like that? Are your kids old enough to help out?

You might want to call the MDA (Muscular Dystrophy Assoc.) and see if they can be of any help in guiding you through the insurance maze or providing direct assistance if you need any medical equipment.

Hang in there.

Liz
 

ltr

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Thanks so much. I will call MDA first thing tomorrow and see if they can help. I live in Elmira, NY (you probably never heard of it!). We have two maximum security prisons and no doctors! Thanks again, I really need some guidance.

My kids are 15, 14 and 9. I don't think they really understand yet. I have done everything for them in their lives and getting them to take over is going to be difficult.
 

Al

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Hi Leslie. I'm north of you up in Ontario and have seen where Elmira is You could also try www.alsa.org and look in the In your Community section for chapters and support groups in your area. Let us know how you make out. AL.
 
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ltr

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Hi Al,

I did look yesterday when I saw that website posted. I believe the closest is Syracuse, 2 hours away. Thats where I am trying to get an appointment, at the ALS clinic. Hopefully they will see me, but so far the ins. co isn't giving the ok. I need to make some kind of solid plan, but I just don't know how.

PS. Looking through that site I found that they are starting meetings in April in Binghamton, which is an hour away. I am happy to find that, just hope I can wait that long.
 

shannonme

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ltr said:
Hi Al,

I did look yesterday when I saw that website posted. I believe the closest is Syracuse, 2 hours away. Thats where I am trying to get an appointment, at the ALS clinic. Hopefully they will see me, but so far the ins. co isn't giving the ok. I need to make some kind of solid plan, but I just don't know how.

PS. Looking through that site I found that they are starting meetings in April in Binghamton, which is an hour away. I am happy to find that, just hope I can wait that long.

Hi there-

I recently found out that ALS clinics that are associated with the MDA have a grant program. They will see you for free and will pay for one therapy session. I hope this helps!

Shannon M.
 

ltr

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Wow, that is good news. I didn't have time to find MDA in Elmira today because I had a doctors appt (rheumatologist), bloodwork, etc. I will contact them tomorrow. Thanks for the information. Leslie
 

Al

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I just love it when we all work together to help out one another. One side of the country to the other and one country to another.
AL.
 

ltr

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Shannon, thank you so much. All of you, thanks. I called the MDA, they are located about an hour away, and they immediately are setting up diagnostics for me if my ins. won't cover. They have a clinic in Syracuse where I made my appt. and are working on helping me with a diagnosis. This is the closest I have come to getting help and it's thanks to the people on this forum. Like Al said, you all came together. Leslie
 

CindyM

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Glad things are working out for you, Leslie. Let us know what transpires. Cindy
 

shannonme

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Good luck

ltr said:
Shannon, thank you so much. All of you, thanks. I called the MDA, they are located about an hour away, and they immediately are setting up diagnostics for me if my ins. won't cover. They have a clinic in Syracuse where I made my appt. and are working on helping me with a diagnosis. This is the closest I have come to getting help and it's thanks to the people on this forum. Like Al said, you all came together. Leslie

Leslie- I'm sending you my best wishes. This is a wonderful website--it's helped me tremendously over the past few months.
 

Jamiet

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Leslie, this sounds great you've got MDA support. They are right, if you can't pay the MDA will cover.

What you explain doesn't sound like ALS or MND, but more like autoimmune reaction. Hopefully i'm right.

it will take time, in the meantime, hang in there. You've got a tough job with 3 little ones. I've got a lot of respect for you, as i couldn't imagine not having someone there to help.

We'll be here for you as much as possible.

Keep us informed..

GOOD LUCK!
 

ltr

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You don't know how much it means to me to say you have respect for me. I am really alone and don't feel very respected. I don't think the few family members I have really understand and think everything will be fine. They still watch me work and expect a lot out of me. Sometimes I feel like collapsing and I certainly cry a lot. I'm sure many of us on this site do.

It's funny that you mention my symptoms sounding like autoimmune. The rheumatologist did some crazy bloodwork (10 tubes) and it came back positive for antiphospholipid antibody syndrome and Lupus anticoagulant (that is nothing to do with lupus. She said the medical association is changing the name). She doesn't feel, though, that it accounts for the neurological symptoms of muscle twitching and weakness. Hopefully the neurologist will know more about whether it does or not.

Again, this site has helped me so much. It sure has made me realize there is people who care about others out there. Leslie
 
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