Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)


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Old 06-06-2009, 08:27 AM #1
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prairiegirl prairiegirl is offline
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Join Date: Sep 2008
Location: Western Canada
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15 yr Member
prairiegirl prairiegirl is offline
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Join Date: Sep 2008
Location: Western Canada
Posts: 101
15 yr Member
Angry still breathing

Hi Gang,
I am still here too. I've had 2 chemo treatments for my MS and the third of five is next week. Chemo is hell and I wouldn't wish it on anyone. So far as I can tell, it's not doing a thing for me other than making me sicker. *sigh*

I am still waiting to get in to see the neuro surgeon who does the implants here. THe waiting list is 14+ months. About three weeks ago, the pain specialist office calls to tell me I was bumped up the list, but still no appointment, so I can't figure out why they would even tell me that.

In the meantime, I have someone from the MS society and a friend's mother who is a person of influence trying to advocate for me. I don't know that it is helping much, even though I appreciate it. I think the wheels of medicine just grind so slowly.

THe pain specialist has also sent my file to a neuro surgeon on the island, but I haven't heard anything about that either. She's also looking into my having to go to another province for treatment, which seems insane when they have the doc and technology here and I live in a large urban center. It seems cruel to ask someone to leave home and go where they know no one to have this kind of surgery. What are they thinking? It makes me so mad. The other thing that annoys me is I keep being told that because I have MS and the ON is from the MS, that makes things complicated. I get the feeling that this means no one wants to try and help. We'll see what the surgeon has to say about that when and if I ever get to see him.

My headaches have been worse since I started the chemo. My pain specialist is away till mid-July so I haven't had shots in about 3 weeks and I am feeling it. I keep taking my meds and I have some torridol for when it's over the top and that's how I am surviving right now.

So...if I sound grumpy and bitter, I am. I am so frustrated with trying to get help when I am struggling to just get through every day. It's bad enough I have to have MS but having ON on top of it and it being my worst symptom of MS just SUCKS.
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