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Title: The Good, The Bad & The Ugly (Update on Dave) Post by Dave_Emond on Oct 2nd, 2003, 12:12am Hi Friends, Well ... still no change in my condition, but promised to keep you updated. Interesting day, as I went to see an Internal Specialist. The Good: This doctor is the type that won't rest until he figures out what the problem is. "At least if I have enough time." He had to throw in a disclaimer, I guess. The Bad: A whole new set of tests. Some don't sound too fun. At least during the Spinal Tap, I was going through enough of a CH attack, I wasn't really caring about anything else at the time and felt no pain from it. Annette & the doctors were questioning how I could take that so easily, although I'm sure Annette knew deep down. Now I'm looking at needles stuck throughout body to shoot electricity into the nerves and see what happens ... sounds like fun. Then they want to cut muscle tissues out and do test on them ... more fun. Then a lot of other tests which I can't remember once I heard the first few. Gave more blood, I'm surprised I have any left. West Nile is back on the table again, as is MS, Lymes, and a long list. So the waiting goes on. The Ugly: Hope you're not in pain right now, cause you're not going to like this. They are sending me to a neurologist who doesn't believe Cluster Headaches are real .......................................................!!!!!!!!!! Having a hard time thinking about how this is going to turn out. I figure it could go a few different ways. 1. If I have an Cluster attack while there and am told I'm not, well .... My next message may come from a cell block. 2. I will bring with me as much info as I can get on CH and try to educate this neuro that CH is real. 3. Forget about talking about CH and stick to the current problem. 4. We get in an argument and nothing gets done at all. I'm hoping #2 will work. I have a lot of info already printed out on CH, but just in case, I could use more. I'll be searching and would like to ask you guys for help on this. Do you have any links that you feel might get this neuro to take another view? Ones that would really get his attention? Or, maybe jonny ... is that bat ready yet? It should have a ice pick embedded on the end, metal nerve ripping claws, an attachment to barrell through the eye, and of course it has to operate on one of those Energizer Bunny Batteries, so as soon as he thinks it's over, I can use it over and over. It keeps going and going and going. Hmmm ... wonder if he'll still think of it as "deviation" of migraine that we just can't tolerate as well as others? Have no clue how this visit will turn out, I'll try the my best to educate him best I can, which way ... is probably going to be his choice. Suggestions? Dave |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by brain_cramps on Oct 2nd, 2003, 12:32am on 10/02/03 at 00:12:29, Dave_Emond wrote:
WTF? :o Did this guy get his degree out of a cracker-jack box? ::) Sounds like he needs an "experience" that would redefine the word "pain" for him! >:( Wish he was in my neighborhood. ;) Good luck Dave grant 8) |
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Title: Re: Holy Moley Post by Mr.Happy on Oct 2nd, 2003, 12:43am on 10/02/03 at 00:12:29, Dave_Emond wrote:
Earth to Dave........... Yo mate......I've been following your woes....albeit quietly........but how can you POSSIBLY approach your condition with a Neuro that doesn't believe in CH? What did Goadsby say about using your brain, post mortem? Inquiring minds, RJ |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by Dave_Emond on Oct 2nd, 2003, 1:30am Well, Trust me, this was a tough call to agree to see this neuro. (I will be seeing 2 others that understand CH, but the dates are too far off.) Right now, there are two reasons to see this guy. First, I've got to know whats wrong with me. 2 months ago I was working through this Chronic CH and found some dignity in it and it made me feel good to defy the Beast. Now, I can't walk by myself, no income, bills backing up, my wife in constant worry and stress over me. If there's anything or anybody that can possibly get me going again, I've got to try. Second, I almost feel obligated in a sense to meet this neuro. Had I not even had an appointment with him and only heard about his views, I'd still have to go talk to him. I can't help but wonder how many possible CHer's he may have or will in the future misdiagnose. How ever it turns out, I feel I owe it to the Cluster family to confront this guy. I understand your view, but do you think you would be able to know someone like this was in your local area and be able to not confront them? No, this is something I must do, who knows ... just maybe I can get through to him, have to try or I have no right to complain about the lack of knowledge in CH from the medical field. Hoping to make at least another push toward CH awareness, no matter how small. Dave |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by suzy617 on Oct 2nd, 2003, 2:59am Wow Dave just wanted to wish you luck with all your tests. I wish you no pain but if you were to get a CH, I'm hoping its in front of this new neuro. :-/ Just promise to not bring any guns or knives into his office. Keep us posted. Suzy |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by OneEyeBlind on Oct 2nd, 2003, 5:21am Good luck with all the upcoming tests Dave. Sure hope they figure out what it is soon !!!!! Don't ya just wish you could induce a CH on people that don't believe in them. Heck, they would be chanting in no time - I believe, I believe, I believe !!!!!!! One and done ! |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by TxBasslady on Oct 2nd, 2003, 8:13am ;D LMAO at Nancy......... :) That's a great idea, Dave....Not that I would ever wish a CH on anyone. But this Dr. might be a good candidate !! 8) Sure hope you can find out what is going on with your body. I hate the thought of you suffering like you are. Hope you can get some sleep sometime today. You and Annette keep in touch and keep us informed. Sending lotz and lotz of pf vibes your way, sweetie. ;) Jean |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by firebrix on Oct 2nd, 2003, 3:07pm All the very best of luck Dave! That's quite a challenge you've taken on there. PFDANs to you and Peace firebrix |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by Ree on Oct 2nd, 2003, 6:33pm What??????????? Why would a Ch sufferer go to a Neuro that doesnt believe that CH is reallllllll? Send the dork here... so does that mean MY Neuro and many others are wrong and this guy is right? too funny~~~ Keep us updated Dave and Annette... and I've been there with the LUMBAR puncture good thing you missed it... It aint fun... though they numbed me (meningitis girl). Annette love and best wishes to you honey... thinking about you ... you are one Hell of a supporter... Good Luck Dave! love Ree |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by Mark C on Oct 2nd, 2003, 7:40pm Links... http://tinyurl.com/pj0x http://jeffline.tju.edu/jeffcme/online/OP129A_Clinician_fa.pdf http://jeffline.tju.edu/jeffcme/online/OP129D_Clinical_Courier_fa.pdf http://tinyurl.com/pj18 http://tinyurl.com/3bzl http://www.mhni.com/faqs_cluster.html http://www.nei.nih.gov/health/talktodoc.htm http://www.clusterheadaches.org/ihs/contents.pdf http://www.clusterheadaches.org/library/general/index.htm This is enough to get yall started, I have at least 40 more so let me know if I can help. Copy the links to a floppy and maybe he will look at them, unless he already knows everything and no room left for learning....I though that is why they call it a "Practice" Good Grief, Mark |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by Charlie on Oct 2nd, 2003, 8:43pm Damn sorry this thing is so hard to pin down. Nice going finding a MD who seems to know what he's doing. Now.....As to this neurologist who got his degree from one of the lesser Marshall Islands medical school branches after four tries, here's the deal: Tell him you have been diagnosed with CH many times and that it isn't why you're there. You are there for this newest horror and not to waste time on some bizarre belief in alternative medicine wishful thinking. If he helps you lose the CH as well from his treatment, great; you'll be his slave. Seriously, if he tells you CH ain't real. Tell him thanks but you'll have to go elsewhere. Get out if you have another choice or think this guy may be one of the freaky neurosurgeons that in my experience, are the ones most likely to treat you like a lab rat. One wanted me to let him dig away in my brain to find the "real" cause of my CH that after two decades has now been gone for 12 years. He didn't want to hear from me about my epilepsy that had been diagnosed, responded to standard anti-seizure drugs, or that it ran in my family. This guy still wields sharp instruments, sadly. Tell your MD if this guy won't pay attention and ask for another if things will allow. You shouldn't have to wait in your case either. Good luck and keep us posted. Charlie |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by Dave_Emond on Oct 3rd, 2003, 2:33am Thanks for all the advice! I agree that if this guy doesn't believe CH is real, I'm not about to think anything else he has an opinion on or diagnosis is going to mean squawt. I'm dying to hear his theory though, I think I have enough info (and experience) to shoot his ideas down so quick he won't know what hit him. Still waiting for a call for the date and time of appointment, probably early next week, plenty of time to go in prepared. Of course I'll be wearing my OUCH shirt as well ;) I'm sure all of you are eager to hear what he "thinks" we actually suffer from, I'll pay close attention and try to relay this as closely as I can. (Wouldn't it be great if he has an E-mail address?) Thanks for all the links Mark, I copied some and put the others on a disk, good idea there! Appreciate everyone's input, Dave |
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Title: Re: The Good, The Bad & The Ugly (Update on Dave) Post by suzy617 on Oct 3rd, 2003, 3:02am on 10/02/03 at 18:33:44, Ree wrote:
Ree, isnt that supposed to be "WTF ??? ??? After being around all us potty mouths it still hasnt worn off on ya yet, huh? ;) Good luck once again Dave, Suzy |
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