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I'm glad and still frustrated. Of course I still have the UAB appointment with the neuromuscular specialist Dec. 23rd and we are waiting on more bloodwork.

I have a couple of questions for anyone:

1. Do doctors rule out the serious stuff first if there are a multitude of symptoms or do they look at the basic stuff first? I am wondering why my doctor mentioned PLS and muscle disease at the visit.

2. How much pain do people with ALS and/or PALS have? Both of my legs feel like one gigantic tight muscle today....not stiff really...just like a pulled muscle if that makes sense.

Thanks for reading,

jennifer
 
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Jenni,

I can't answer that one but here's hoping you get a Christmas present on December
23rd in the way of some answers regarding your "PNS".

Its great to know your brain is okay! You beat the scarecrow out on that one!
(I guess its about time to get off the Wizard of Oz kick...)

Zaphoon
 
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Hi Jennifer. I don't usually have pain as a normal thing. Riding in the van usually gives neck pain the next day from doing the bobble head thing. Back when I could lift things and lifted something heavy I'd get sore muscles. I'm not sure if they rule out the serious stuff first or the cheap stuff. Blood tests first then maybe LP, then MRI them NCV/EMG. Depends on what they find first and with the physical exam that might make them mix up the order. Good question but might not be a 100% hard and fast rule.

AL.
 
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Thanks Kim and Al!

I really do not have much pain if I do nothing strenuous, Al....except in the middle of the night before I started the baclofen. I have been very busy the last three or four days and that's when I've noticed the most pain, the busier I am. That's also when my left leg gives out and both legs get the crazy muscle cramps.

I have friends who say what if this is fibromyalgia or chronic fatigue syndrome? I wonder that, too, but my doctor hasn't mentioned that at all and I don't have some of the stuff they list as symptoms. I do know my rheumatoid factor was positive but my doctor didn't seem phased by that, just kept talking about my upper motor neurons, clonus, muscle diseases, etc.

And thanks for the song, Kim :) It did make me smile! "If I only had a brain!"

jennifer
 
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Just spoke to the doctor's office again. My rheumatoid factor is 46 and it's supposed to be below 15 so i asked if i should see a rheumatologist and she said no, that my doctor is leaning toward neuromuscular and i need to go to uab first.

I want to cry and I want to scream. I want to beat my head against a wall. And I am so sorry I am such a downer today.
 
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Hi Jenn,

Just wanted to say I feel your pain, really I do (emotionally and physically!). I am sorry you remain in limbo and hope the holidays bring some answers. And hey, if you can't be a downer here, then where can you? If nothing else you are surrounded by many others who find themselves in similar situations; who can commiserate with you.

I do wonder why you couldn't just see a rheum at the same time as seeing a neuro...why have all these consecutive visits...when you wait weeks if not months for some of those appointments? Why not have two doctors working concurrently? I don't get this process and have no advice on how to navigate it...:(

Try and take care,

Lydia
 
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Hi Jenn,

What kind of insurance do you have? If you don't need a referal I would make an appointment with a rhumatoligist. The nuero doesn't have to know.

Hang in there,
 
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Thanks, Ladies! I think I'll call a rheumatologist tomorrow :)

jennifer
 
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Jennifer,

Just want you to know that I know what you're going through. I alsw have an elevated rheumatoid factor, last checked it was 109. I have a benign tumor surrounding my pituatary and also a newly found meningioma on my spine. Still no diagnosed but they still think its more likely neuromuscular than rheumatologic. Im not sure - lots of pain in my hands and knees.?

Hang in there, its been 2 years for me - I know you're frustration

Gina
 
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ohhh I know.....I have lots of pain in my hands and knee's with feet. mY RF was only 15, bummer.

I had a +ana, speckeled smooth pattern, wich is usaully tied to lupus. MY rhuemy said no lupus.

It is frustrating. Hang in there.

ps. I had a tarslov cyst on my spine, but the mri said that it was not that important?
 
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