J.A.W. Posted February 3, 2005 Report Posted February 3, 2005 SEK, sorry to hear about your troubles. I hope they can find a way for you to be better. I second that. All the best, SEK. Quote
catesta Posted February 3, 2005 Report Posted February 3, 2005 And what we need to do is move vertically, up to the next tier. He suggested Mayo or Cleveland Clinic. From what I've read, those are solid recommendations. These are supposed to be the top 10. US NEWS & WORLD REPORT Quote
catesta Posted February 3, 2005 Report Posted February 3, 2005 SEK, sorry to hear about your troubles. I hope they can find a way for you to be better. I second that. All the best, SEK. Absolutely. Quote
maren Posted February 3, 2005 Report Posted February 3, 2005 SEK, sorry to hear your news -- hope they can keep you in good shape. Quote
Jim Alfredson Posted February 18, 2005 Author Report Posted February 18, 2005 So, last Friday I was up in northern Michigan while Alison had an appointment with another neurologist. He is not related to the MSU Health System and according to my wife was very supportive and wants to actively help her get back to work. He prescribed Neurontin, which she has been taking for almost a week. I'm happy to say that this medicine basically made our trip to NYC possible. She would not have been able to do any of this without it. It lessens her fatigued, masks most of the tingling, and generally just makes her feel more "normal". And she's only taking a small dosage right now. We're going to try to up the dose a little and see what happens. So, although we still don't have a diagnosis, at least she has a little relief from the symptoms! Quote
doubleM Posted February 18, 2005 Report Posted February 18, 2005 Sounds positive! I hope that NYC was a lot of fun. Quote
Rooster_Ties Posted February 18, 2005 Report Posted February 18, 2005 I'm happy to say that this medicine... ...lessens her fatigued, masks most of the tingling, and generally just makes her feel more "normal". And she's only taking a small dosage right now. We're going to try to up the dose a little and see what happens. So, although we still don't have a diagnosis, at least she has a little relief from the symptoms! Wonderful news!!! All our fingers and toes are crossed for you two. At least this is some real progress, for a change -- even if you still don't have hard answers. Quote
Dan Gould Posted February 18, 2005 Report Posted February 18, 2005 I was wondering how Allison was making the trip. Good to hear that something is making a difference in the symptoms! Quote
Jim Alfredson Posted February 18, 2005 Author Report Posted February 18, 2005 I was wondering how Allison was making the trip. Good to hear that something is making a difference in the symptoms! Yes, the change has been pretty dramatic. She is much livelier, less foggy, and more like herself. And she has a lot more energy. It's quite amazing, really. We'd still like to know what this is, but after three months of non-stop symptoms, the relief is definitely welcome! Quote
sal Posted February 18, 2005 Report Posted February 18, 2005 I'm sorry it took me so long to drop in on this thread. I hope your wife starts feeling better, b3-er. Quote
SEK Posted February 18, 2005 Report Posted February 18, 2005 Yes, the change has been pretty dramatic. She is much livelier, less foggy, and more like herself. And she has a lot more energy. It's quite amazing, really. We'd still like to know what this is, but after three months of non-stop symptoms, the relief is definitely welcome! This is very splendid news. Relief is great! Quote
sidewinder Posted February 18, 2005 Report Posted February 18, 2005 Very pleased to hear this ! Quote
randissimo Posted February 18, 2005 Report Posted February 18, 2005 Yes, the change has been pretty dramatic. She is much livelier, less foggy, and more like herself. And she has a lot more energy. It's quite amazing, really. We'd still like to know what this is, but after three months of non-stop symptoms, the relief is definitely welcome! This is very splendid news. Relief is great! Great news Jim !! BTW, I didn't know you went to NYC.. YOU NEVER TOLD ME !!! Quote
Jim Alfredson Posted February 18, 2005 Author Report Posted February 18, 2005 Yes, the change has been pretty dramatic. She is much livelier, less foggy, and more like herself. And she has a lot more energy. It's quite amazing, really. We'd still like to know what this is, but after three months of non-stop symptoms, the relief is definitely welcome! This is very splendid news. Relief is great! Great news Jim !! BTW, I didn't know you went to NYC.. YOU NEVER TOLD ME !!! It was all over the board, you foo! Quote
Aftab Posted February 19, 2005 Report Posted February 19, 2005 Good to see she's starting to feel a lil better Quote
alankin Posted February 20, 2005 Report Posted February 20, 2005 Glad to hear she found something that helped! Quote
Jim Alfredson Posted April 13, 2005 Author Report Posted April 13, 2005 Yes, thanks for asking. My wife went back to work at the beginning of this month, part-time. They put her on a new medication called Topomax. The Neurontin wasn't helping. This Topomax stuff is at least relieving her headache, although she says the numbness now seem more prevalent... probably because she's not concentrating on her headache! She's only on half the dosage that she'll eventually be on... they are ramping it up slowly. So far, so good. No one knows what is wrong with her still, but at least she's able to get back to living her life with some feeling of normalcy. She is still totally wiped out after work, however. Quote
Jim Alfredson Posted October 13, 2005 Author Report Posted October 13, 2005 Well, after having a small lead appear in my wife's problems, we're back to square one. She had been complaining to our PCP about her left eye, which has given her problems from day one (remember that the very first symptom of all this happening back in November of 2004 was waking up with a bloodshot left eye). Recently she had experienced more fatigue in that eye and blurring, along with a strange halo effect and even pain. So the PCP finally sent her to an opthamologist. He gave her a Humphrey Visual Field Test, which the right eye completed in less than 5 minutes. Her left eye, however, took 17 minutes to complete. So they did it again a few days later. Same results. This led the doctor to think that maybe something is affecting her left optic nerve, so he sent her back to MSU's neurology department to see a neuro-opthamologist. He performed the visual field test again, getting the same results. He then scheduled an optic nerve MRI that also included her upper C-spine and her left shoulder, since the numbness/tingling/pain goes down into her arm and into her left hand. We had a follow-up with him today where they performed yet another visual field test (twice!) and went over the MRIs. Basically, he said he has no idea what is going on. My heart broke. I was really hoping this would lead somewhere. So here it is, almost a year since these symptoms first showed up and we still have no idea what the cause is. At least the Topomax is helping, but Alison is losing a lot of weight (one of the side effects). I'm trying to get her to start drinking some weight lifter shakes for breakfast or something. Something with a lot of calories in it, since her appetite is basically gone. She admitted that while I was on tour, she barely ate dinner, since I wasn't here to goad her into eating it. But all things considered, we're doing well. I guess we just have to continue to wait and see what happens. The neuro-opthamologist did say that the cause might be viral and such things sometimes attack very specific parts of the brain and cause wacky symptoms like these. I asked if it eventually goes away and he said sometimes they do and sometimes they don't. Not very reassuring. Anyway... just thought I'd give everyone an update. Quote
RainyDay Posted October 13, 2005 Report Posted October 13, 2005 Well, after having a small lead appear in my wife's problems, we're back to square one. She had been complaining to our PCP about her left eye, which has given her problems from day one (remember that the very first symptom of all this happening back in November of 2004 was waking up with a bloodshot left eye). Recently she had experienced more fatigue in that eye and blurring, along with a strange halo effect and even pain. So the PCP finally sent her to an opthamologist. He gave her a Humphrey Visual Field Test, which the right eye completed in less than 5 minutes. Her left eye, however, took 17 minutes to complete. So they did it again a few days later. Same results. This led the doctor to think that maybe something is affecting her left optic nerve, so he sent her back to MSU's neurology department to see a neuro-opthamologist. He performed the visual field test again, getting the same results. He then scheduled an optic nerve MRI that also included her upper C-spine and her left shoulder, since the numbness/tingling/pain goes down into her arm and into her left hand. We had a follow-up with him today where they performed yet another visual field test (twice!) and went over the MRIs. Basically, he said he has no idea what is going on. My heart broke. I was really hoping this would lead somewhere. So here it is, almost a year since these symptoms first showed up and we still have no idea what the cause is. At least the Topomax is helping, but Alison is losing a lot of weight (one of the side effects). I'm trying to get her to start drinking some weight lifter shakes for breakfast or something. Something with a lot of calories in it, since her appetite is basically gone. She admitted that while I was on tour, she barely ate dinner, since I wasn't here to goad her into eating it. But all things considered, we're doing well. I guess we just have to continue to wait and see what happens. The neuro-opthamologist did say that the cause might be viral and such things sometimes attack very specific parts of the brain and cause wacky symptoms like these. I asked if it eventually goes away and he said sometimes they do and sometimes they don't. Not very reassuring. Anyway... just thought I'd give everyone an update. ← I'm really sorry to hear of this. You have probably turned over every rock, etc. but have you considered going to a research hospital or something? Like Johns Hopkins? Is there someplace that specializes in the unknown? I hope this all works out for you. Quote
Indestructible! Posted October 13, 2005 Report Posted October 13, 2005 Hi Jim, Thanks for the update... I truly hope you and Alison can find out what the cause of this issue is, and that Alison recovers from this soon! It sounds like Alison is one tough cookie, and with your help I'm sure you'll all get through this. I'll send some positive vibes your way today! Cheers, Shane Quote
BERIGAN Posted October 13, 2005 Report Posted October 13, 2005 Jim, very sorry to hear you all are still having problems. I had hoped it had resolved itself. It sounds like the eye issue has to be a clue, have you tried a medical forum, to see if anyone has heard of something like this? WebMD, or something like it? Best of luck! Quote
neveronfriday Posted October 13, 2005 Report Posted October 13, 2005 I also thought things had at least eased up quite a bit. No such luck. I'm really sorry to hear that. I myself have been battling for weeks now with something the doctors simply can't get a grip on (as it turns out, I'm basically resistant to any antibiotics they have thrown at me [or rather the stuff screwing me up is resistant against that]). I've had to take some really strong pills which have given me an inflamation in all joints (no idea what the medical term is in English), to boot, and at the moment the doctors (three separate experts in the field) are just hoping it will go away by itself (fat chance). Basically, they don't know what to do. In comparison, it's only a nuisance, but I know what kind of frustration your wife and you are feeling. All the best. I hope you will find the cause of the problems and a treatment soon. I'm keeping my fingers crossed, as mucch as that is possible at the moment. Quote
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