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Title: Sequel to the Saga ... Post by Dave_Emond on Oct 14th, 2003, 4:59pm Hi Gang! Just thought I would start a new thread rather than go allllllll the way to the bottom of my previous rant. Thanks to all of you for your continued supportiveness and concern. I saw a neurologist yesterday, and both Annette and I were confident that he is taking this whole thing very seriously. He wasn't prepared to make any guesses, and certainly didn't have any answers yet. He did tell us that one of the blood tests shows a very high level of aldolase, an enzyme that shows up when muscle tissue is damaged. What this means may be more apparent once I go through the EMG next week ... Yikes :o and the neuro is reserving judgement until he sees those results too. On the good side... my white count has come down to about half of what it was (Prednisone maybe? am down to only 15 mg/day now) He also ordered an immediate ultrasound scan of both legs, as I have developed extreme sensitivity to touch and pressure, and he was concerned about phlebitis (blood clots)... the ultrasound came up negative for clotting, but Annette being the worrywart that she is is still very concerned, and harps at me constantly to keep moving, elevating, and generally not sitting for hour upon hour in the same chair. I, of course, try to talk back and tell her that this is the only chair I can be comfortable in for any length of time ... but I made the horrible mistake of telling her that she was the boss when all this started, and now I am to a large degree "paying the piper". I don't know what I would do without her though, so I can't be too hard on her for that. I finally was able to sleep again for awhile last night, but again woke to terrible pain in my legs especially. Determined not to wake Annette, I spent considerable time sneaking out of bed, into the wheelchair, and out into the living room. I DID IT! she didn't even know I was gone until she woke up this morning. I have been working really hard today on walking more, in spite of the pain. As soon as I feel I can handle it, I'm going to try the stationary bike for a few minutes at low tension. I am determined that this cousin of The Beast won't get me either, and the support I am getting from all of you keeps me going, and going, and going. Dave |
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Title: Re: Sequel to the Saga ... Post by oringkid on Oct 14th, 2003, 5:04pm Good!! Keep moving. As long as the clots are negative, I'm convinced that keeping your body moving is best. Is the pain a burning pain? Burning pain is usually nerve pain. Keep movin' and keep fightin'! You've had the best training by having CH! Still sending strength and energy your way! Sherry |
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Title: Re: Sequel to the Saga ... Post by Charlie on Oct 14th, 2003, 5:16pm Good going Dave. What a PITA this thing is. The fact that you want to do stuff like the bike is a good sign I bet. Keep plugging. Charlie |
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Title: Re: Sequel to the Saga ... Post by Cerberus on Oct 14th, 2003, 5:59pm Keep on keepin on Dave!!!! I'm pullin for ya ;) Being as you have officially given the helm to the spouse be advised that you are obligated to make things as much a pain in the keester as she had for you PRIOR to reliquishing power ;D......heh.....Actually......I reckon you oughtta listen to her a bit, she only has your best interests in mind. Dunno what I'd do sometimes if the Woobster wasn't up my ass about things from time to time. Jeezus......did I just say that out loud? ::) :-X ??? Yup......oh well, no point in takin it back now lol. ;D Ok, OK I'm whupped, what can I say, she grows on ya like a fungus ;D Ramon |
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Title: Re: Sequel to the Saga ... Post by Woobie on Oct 14th, 2003, 7:12pm on 10/14/03 at 17:59:27, Cerberus wrote:
LMAO!!!!! Who are YOU and what did you do with my husband? Dave - hope you find out what the heck is going on soon, so you can take care of it and get on with life!!! Good luck to you!! Give Annette a big fat kiss........ she deserves it. Does she come on here??? tina :-* |
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Title: Re: Sequel to the Saga ... Post by 9erfan on Oct 14th, 2003, 7:38pm Dave, I'm totally pulling for you & you're still in my prayers. You can whip this thing, whatever it is. You sound like you have a great attitude, and that's half the battle. Keep us posted! Sending hugs your way, Virginia |
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Title: Re: Sequel to the Saga ... Post by maria9 on Oct 14th, 2003, 7:44pm Dave, sorry to hear about the continued health problems. But I have been wondering have the doctors ruled out Guillain-Barre Syndrome and Multiple Sclerosis? Hang in there, we are all rooting for you. Maria |
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Title: Re: Sequel to the Saga ... Post by andy on Oct 14th, 2003, 8:04pm on 10/14/03 at 19:12:41, Woobie wrote:
.......andy |
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Title: Re: Sequel to the Saga ... Post by TxBasslady on Oct 14th, 2003, 8:28pm :) Hi Dave & Annette, I know that you will get the answers you need real soon. Hang in there, and know that we are here for you. 8) Sending lotz of love and vibes to you both..... :-* Jean |
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Title: Re: Sequel to the Saga ... Post by BobG on Oct 14th, 2003, 8:50pm Dave and Annette Prayers, good vibes and all that going from our home to yours. |
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Title: Re: Sequel to the Saga ... Post by Callico_Kid on Oct 14th, 2003, 10:52pm Dave and Annette, We have been praying for you and have asked some of the young people in our church youth group to pray also. Keep on trying, and keep us up to date. Glad you found a Neuro that is going to work on it! We'll pray for supernatural wisdom for him. Jerry |
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Title: Re: Sequel to the Saga ... Post by Dave_Emond on Oct 15th, 2003, 3:31am Thanks All! Just am pulling myself together after a record 3 1/2 hours of sleep over the past month. Still awoke to extreme pain through both legs, but at least the shock has lessened as I’m learning to expect this on waking. So far, all but my right lower leg usually strengthens up after about an hour or so and I can hobble around easier. Since I’m just now sitting down after that 30 foot “journey” and waiting for most of the pain to subside, it’s probably a good time to answer your questions while it’s still fresh in my memory. Pretty much like the CH attacks, I tend to forget from attack to attack how bad each CH attack REALLY feels. I know they’re bad, know they’re going to be bad, but each time I get hit again, its like, “Wow! This is worse than I remember!” Anyone else relate to that? So, with that in mind, while the pain is still here, I can try to answer each of you better than I could a few hours from now. Sherry, “Is the pain a burning pain? Burning pain is usually nerve pain.” When this first started, I knew it was nerve pains, when I try to describe it to the docs, I tell them it’s like shooting bolts of electricity through my nerves, deep inside where trying to grab at it does no good. (This is why I’m dreading the EMG test so much.) Charlie, PITA yes, literally! :-/ Going to try the stationary bike today, this night after waking, I skipped the wheelchair and used the walker. I feel it could be too easy to rely on the wheelchair to escape the pain, making my muscles weaker and weaker from lack of use. Will only use it when I have no other choice. Ramon & Tina, so glad you two have found each other again, it’s an inspiration to us all that courage by both leads to understanding. Very proud with both of you. I’ve had times where Annette has had to kick me when I get frustrated. At one point, she turned to me and said, “Can we go one day without talking about your pain?” A light bulb in my head came on; I instantly realized she was right. Not only was I not doing myself any good, but also adding to the stress she was feeling in dealing with everything. It worked, and has since helped us help each other get through this. As for telling her she was now the boss … I plead temporary insanity! ;) Actually, she can see things I do or don’t do, and out of love will remind me of the important things that will see us both through these rough times. Both your posts made me laugh and feel happy for you. (Annette has registered, but hasn’t received a password? She follows the board as much as I do and sometimes replies under my name.) Maria, no, they haven’t yet ruled out Guillain-Barre Syndrome and Multiple Sclerosis. The list of possibilities though is still longer than that of which they have ruled out. That’s the really tough part. We can all remember how frustrating it was dealing with CH and having to wait so long before we were properly diagnosed, although the news was bad, at least we now had a name for it (not a good one) and could learn how to deal with it. And especially find others in places like this that understand and support each other. Kind of how we feel now about this now, please find us a name so we can go from there! Virginia, Jean, Andy, Jerry and my long time friend Bob, thanks for the prayers and vibes, I can actually feel them, I feel everyone’s support and it helps a lot! Jerry, thanks for putting me on your church prayer list, I think God is hearing all of you and so am I :) Dave |
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Title: Re: Sequel to the Saga ... Post by Surf on Oct 15th, 2003, 3:57am Dave, Glad to hear your making your way through the fog...Surf |
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