neuro and mri
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July 17, 2009 at 9:12 pm
Had an MRI done waitning on results should have them tuesday hopefully this will explain what is going on in my body. incontience is getting worse my mom is threatening me with depends. i worked really hard to get out of them the first time i dont want to go back. no driving is frustrating me and my parents. i hope this is not permanent. i know the numbness in my feet is but i hope the rest is not. i use my sleep apnea machine but is not helping with any of the fatigue or the memory issues. got out of the house today pt and then lunch with a friend used my crutches and no afos boy was that scary. but brace on in house so i could just use my cane(and an occasional wall.) thanks for listening. jojo
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July 18, 2009 at 9:30 pm
Hi: Sorry you are having a rough time. Hopefully you will come up with some answers soon. I have sleep apnea too and use my machine every night-it helps a lot with the terrible tiredness that can come with sleep apnea when I would fall asleep driving-but it doesn’t help with residual fatigue. I wonder if you are having residuals flare up? Again I hope you get your answers soon, but meantime it helps to practice patience dealing with all this. The founder of the kind of psychoanalysis I do once painted a large room with thousands of tiny fish covering every inch of the wall and out of the mouth of every fish came the word: patience. I couldn’t do that, but I do try to give my body a break and be patient with its inconsiderate failures. I think if he had had GBS he would not have needed to paint fish-his body would have taught him patience soon enough. Good luck. Jeff
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July 20, 2009 at 4:43 pm
going in am to get results. still tingling aknd had to put my brace back on so i can go back to using my cane. crutches too cumbersome.incontinence stoll an issue just going every couple of hours.will post tomorrow
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July 22, 2009 at 5:50 pm
everyting ok on MRI. sending me to do a sleep study . i guess he doesnt know what to do. tingling especially strong right now. worked today and did PT I am wiped out. he said i could decide whether to drive or not. right now dont feel safe. its really getting strong in my hands. typing with 1 finger. didnt say anything about incontinence. i have already been to therapy for that.
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July 22, 2009 at 7:49 pm
Please excuse my frankness, but OMG, what does this doc need to make the dx, from what you write of your condition, it does not seem possible that the doc cannot see the decline. You need to put your life in your own hands, not your mom’s or the doc and get to another doc. You are wasting valuable time and run the risk of permanent damage. I cannot think of any other way to put this. Is it possible you are not relaying things to your doc? Maybe you could print out some of your threads and bring them to him. If you continue to do nothing and settle for what you are told, it may get to the point that it will not be possible to have the control to get to a new doc and help yourself. If the mri is ok, it is obviously not ms, you continue to worsen, so it is not gbs residuals. Your incontinence and bowel issues indicate autonomic involvement that is progressing, your ncv/emg studies indicate cidp, there is no other conclusion. Something is missing in the story, or this doc just is not equipped to handle your case based on what you tell us your progressive symptoms are. Bottom line, get yourself to a new doc, or better yet to a different er that your current doc is not at. Good luck.
Dawn Kevies mom -
July 23, 2009 at 11:27 am
i dont understand the dr issues either, he was recommended by another patient. i am a little confused as to why he hasnt done more i guess we will do the sleep study and see. i do have sleep apnea and use a machine. maybe this is just the way it is going to be if that is it they need to tell me.at least i will know what to expect.
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July 23, 2009 at 11:00 pm
JoJo87
why are you not getting it! Everyone keeps telling you to find a new Neuro and you keep saying I don’t understand why he isn’t doing anything for me but I will wait and see.
Take control of your life. Find a new doctor!!! Or you will get worse.. I just don’t understand why you are not seeking a new doctor.
I get so mad when I read your post because you get on here and complain about your doctor and you act like you want answers and help but you do nothing to make your life better. You just sit there and your letting yourself get worse.
FIND A NEW DOCTOR NOW NOT LATER!!!!!!!!!!!!!!!
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July 24, 2009 at 2:22 pm
i am listening to everyones advice but there are other issues with my parents. they control my bank accounts and my appointments it has to do with my mental health issues and circumatances, i am going to have my mom look at these posts whan she gets back she is in California right now. i dont understand the neuro and his wait and see attitude but he is the 3rd dr for me. he came recommended by another patient. the first docotr which was on top of things and going to do treatment left her practice and i cant find her new one. left the 2nd to go to the 3rd. so i have pursued other doctors. they mention a course of treatment but dont do it. i begining to wonder if it is not in my head although other peopole like my therapists have noticed a change. Maybe this is just how i will be the rest of my life? please dont get frustrated i have enouogh people yelling at me daily then i come here for refuge asnd advice and get the same thing.
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July 24, 2009 at 4:03 pm
JoJo, suggest to your dr to have a skin biopsy performed. It might give a clue as to why you have bladder/bowel problems. I had it done in March, came back as small fiber neuropathy-cause still unknown but most likely due to lack of treatment during the initial paralysis events. I consulted a cardiologist and other specialist concerning this, it can affect the autonmic systems-bladder/bowel included. I was dx with neurogenic bladder/bowel late last year-caused by the first and subsequent paralysis events. I experience more problems when I relapse. Timed voids are very helpful during those flare ups. Its nothing one can’t live with, just an inconvenience at times. Other than things like timed voids and kegle(?) exercises there really is no need for any kind of therapy. Avoiding this or that is silly-not proven to be reliable. Drinking filtered water is the best thing you can do-8 to 10 8oz glasses a day, or more. Like I said its really not a huge problem if you take the little steps to work it into your daily life. I don’t even think about it much unless I notice a problem. If you still have bad issues with your bladder there are meds that can be taken to help. Do research and you make the decisions. Take care.
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July 24, 2009 at 5:38 pm
Jojo,
I know the neuro you’re seeing. What are you telling him?? He’ll listen but you have to tell him what’s going on. You had GBS and now having neurological symptoms that are progressing.
Have you ever been on had Steriods/predisone/ IVIG ? Did they work?
What treatment did the lady neuro do that helped you?
You can PM if ya want. I’m concerned you’re going to a wonderful doctor and he’s not understanding? Somethings missing in this picture. Why a sleep study when you can’t walk?? -
July 24, 2009 at 11:00 pm
again jojo I am sorry if I sounded like I was yelling or mad at you. I just want you to get the treatment you need before permanent damage happens. It does make me mad that a doctor won’t give you treatment because you are bipolar. it doesn’t make sense. hang in there and get better soon.
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