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Title: New Neuro followup...MRI Post by Surf on Oct 10th, 2003, 3:05pm (Yawn...had my third visit to my new neuro today... This guy has it goin on, He gives me the impression that he knows what it's all about. So today we reviewed meds... Verapimil/240 Celexa/5 every other day Valium/5+daily Iba something not to exceed 3 doses in 1 week On hand as needed/o2/Imitrex injections not to exceed 12mg sumitriptan in 24 hrs(used for "rude awakenings") Imitrex nasel inhalent (only works on the onset while awake) Folic Acid Doctor ordered a mri for monday as to check the (Brain) and neck. Still have not been able to shake the neck thing goin on. We are also running some blood today as my neuropathy has began to get worse. I do not understand why? It was very bad about a year ago and has turned to get worse after this last cycle, my balance is all screwed up again and the pain is persistant and weakness throughout. The energy level is at an all time low, so discontinued the Tizanidine muscle relaxer, didn't notice any help from it much. May add to the low energy level also. A blood draw was done this afternoon and I hope that it may hold some answers. The low energyI mean it is in the pits. Maybe the folic deficiency thing has popped up again. I truely dislike walkin the stagger, if it gets any worse I may just fall down. This truely puts the bite in my quality of life not to mention the h*ll I go through when in cycle. Ultram is a no no . I sure hope we are to find some answers cause I should have snapped back by now from this last cycle but I got to admit it was the worst one to date in the history of ME...take care now, all of you...Surf |
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Title: Re: New Neuro followup...MRI Post by Dave_Emond on Oct 11th, 2003, 1:54am Hey Surf, A lot of that sounds familair ... I guess you know I've been having some strange problems lately. Almost done tapering off the Prednisone. Can't get out of recliner (only place I can sleep and then only 2 hours at a time) without help. Takes another 15 minutes to use walker to get to the bathroom about 20 feet away. Body is just wasting away and pain increasing everyday. Countless tests have been done (surprised I have any blood left!) with many more to come. Still no diagnosis. Am chronic CH, but think this is unrelated. You mentioned Neuropathy. I'm scheduled for one of these tests on 22nd. The paperwork says: Myositis/Neuropathy Upper & Lower Extremities EMG Do you know if Neuropathy is a disorder or a type of test? I know what Myositis is, but Neuropathy, after trying to look it up, just got confusing. Maybe you could tell me more? My neck is also one of the worst areas of pain, lift or turn my head, just about pass out, get dizzy and can't barely think. Strange this all started with just some shooting nerve pains in my left upper arm and has now spread through my entire body. All the way to my right foot that is just about worthless now. Body shaking almost all the time, with pulse rate now always above 100 to 148. All muscles weakening each day, with nerves shooting extreme pain randomly throughtout body. Just wondering what to expect from this test and what Neuropathy means, have any info? Thanks, Dave ??? |
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Title: Re: New Neuro followup...MRI Post by Surf on Oct 11th, 2003, 2:20pm I guess you know I've been having some strange problems lately. Almost done tapering off the Prednisone. Can't get out of recliner (only place I can sleep and then only 2 hours at a time) without help. Dave, Sorry to hear about the sleep thing that puts a bite in the whole picture as it is. , Catch the zees when you can. You mention (help) what ya using for the help. Excuse this mess Im learning to paste and copy. Do you know if Neuropathy is a disorder or a type of test? I know what Myositis is, but Neuropathy, after trying to look it up, just got confusing. Neuropathy is a disorder. The docs use a series of test to check for it. In your case I,m not sure what they would be. As for me it was Electro somthing and a nerve stimulation, and yes it is painful for me. Takes another 15 minutes to use walker to get to the bathroom about 20 feet away. Body is just wasting away and pain increasing everyday Dave dont quite, so what if it takes 15 min or an hour the more you do the easier it will get, my aunt norma who was 85 at the time told me how she kept in shape" she got a football player to assist her in working out, she said ya know we must keep our joints lubricated or else well eventually lose the ability to use them. She lived a grand ole age into her very late 90s what a wonderful person she was, she loved to travel the world. Maybe you could tell me more? Dave,I am not that familiar with Myositis/Neuropathy every case is different. My neuropathy started in my little toe and from their spread to my two feet. I woke up one morning and wondered what the heck is going on,went to er sometime later and thats when I was diagnosed with poly neiropathy. Ya they started me on neurontin about 300mg, alot of good that did as I was in alot of pain and discomfort. I remember going to several Dr. trying to explain to them what was goin on and how much it hurt. My objective as to seeing them was to get some codiene cause it worked. thought I could have taken this untill my neurontin built up, ya in this small town I think I had to go to 3 of them, They may have just thought I was looking for drugs to get off on, anyway I got my medicine and the neurontin tried to kick in not sure if it did. Then I call my Dr up at the university for something and I think it was one of his cronies who may have started me on ULTRAM. What an A$$. we are talkin a mega dose her. now ultram is a synthetic(narcotic) it mimics the narcotic effect, after bein on this crap I tell you what the ole stagger was induced by 400 fold. I was taking a woping dose over a thousand I think. I fanally threw the stuff in the recycle bin.started to get back in shape and even though it hurt (neuropathy) I had to keep goin. The more I excited the nerves in the feet I hoped the more responsive they would come to the (Normal ole feeling). Ya I remember a waping dose of neurontin of up to 1200x4 just to shut me up from btchin about the pain to my doc all the time.Anyway I have been down and unable to do much physical since the first of the year, this may be why the neuropathy is coming through so prevailent now, lack of stimulation to the nerves while being caged with my clusters.Just found out today that my white count is elevated and that the Folic is in line . They thought that maybe it was a lack of folate and vitamin b that caused the neuropathy in the first place. I truely dislike it when a Dr.guesses, Hay do you know DR.Guess, I bet we all have met him. GP=General Practice,I am tired of bein practiced on. My neck is also one of the worst areas of pain Dave hopefully we will use the mri to find something goin on or not in the neck, the knots been their since last cycle as is very discomforting? Body shaking almost all the time Dave sounded like me having a cluster and on the whopong dose of ULTRAM Dave hope this help, I can't seem to find the button to push in order to retrieve my Messages from the board. Take care now., all of you...Surf |
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Title: Re: New Neuro followup...MRI Post by jonny on Oct 11th, 2003, 2:55pm Another case of posts on tape. Take it to e-mail, your fucking killing me with all this reading.......LMMFAO ;D ......................................jonny |
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Title: Re: New Neuro followup...MRI Post by Surf on Oct 11th, 2003, 3:38pm Take it to e-mail, your fucking killing me with all this reading.......LMMFAO ...... ................................jonny ------------------------------------------------------------------------ The King has Posted... OK jonny...It won't happen again. |
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Title: Re: New Neuro followup...MRI Post by Surf on Oct 11th, 2003, 11:52pm ...the Ultram...was recomended from the neuro to take to combat the cluster cycle.It only made the (CH) worse. Again had the sleep thing goin on at this time. It was worth a try...surf |
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Title: Re: New Neuro followup...MRI Post by romain on Oct 15th, 2003, 11:58pm Just curious, since he did the blood test, does he think you're anemic? And why does he have you taking folic acid? If he finds you anemic, ask him to run a test for G6PD. You should rule this out. If it comes back positive, he will need to change your meds, then no more sleepies. :) |
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