EllaJ
06-09-2005, 07:31 PM
Hi everyone,
This is my first post but been lurking awhile so want to thank all of you for all your great help and advice. It has gotten me through the last three weeks which are kind of a blur. Basically, I've not been diagnosed with anything yet. My gp I know was leaning towards MS but told me wait for MRI. ( I had numbness half of face, various other not fun stuff and next day right hand partially parylyzed and weakness in legs fatique etc. Have been healthy except eight years ago had numbness and tingling in left side, also twitch in left toe and joint pain on left esp at night. Had that thing where muscles feel like you've been working out for hours but you've just been trying to sleep! Most disturbing to me was the dysphagia thing. SCAREY. Was off and on for two weeks seems to come and go. Everything comes and goes and I wish it would go forever! Sorry for long msg. Had MRI brain only clear. Saw neuro he was very
patronizing said after exam "oh well I don't know where people get these symptoms, I guess they read the internet too much. "Gee whiz I was TICKED.
Believe me, I know he has seen so many people who are way worse off than me and I sometimes feel embarrassed about even going to the dr . So nuero ordered eeg and is testing for Lyme. He said to come back if I got worse. He didn't do evoked potentials and said oh you don't want to do a spinal tap. Gosh darn it who DOES? So what does the eeg show please ? My gp told me he wanted to see a copy of it when I had it done. Wondering where to go from here...
Thank-you to you all and I wish you happiness and health.
This is my first post but been lurking awhile so want to thank all of you for all your great help and advice. It has gotten me through the last three weeks which are kind of a blur. Basically, I've not been diagnosed with anything yet. My gp I know was leaning towards MS but told me wait for MRI. ( I had numbness half of face, various other not fun stuff and next day right hand partially parylyzed and weakness in legs fatique etc. Have been healthy except eight years ago had numbness and tingling in left side, also twitch in left toe and joint pain on left esp at night. Had that thing where muscles feel like you've been working out for hours but you've just been trying to sleep! Most disturbing to me was the dysphagia thing. SCAREY. Was off and on for two weeks seems to come and go. Everything comes and goes and I wish it would go forever! Sorry for long msg. Had MRI brain only clear. Saw neuro he was very
patronizing said after exam "oh well I don't know where people get these symptoms, I guess they read the internet too much. "Gee whiz I was TICKED.
Believe me, I know he has seen so many people who are way worse off than me and I sometimes feel embarrassed about even going to the dr . So nuero ordered eeg and is testing for Lyme. He said to come back if I got worse. He didn't do evoked potentials and said oh you don't want to do a spinal tap. Gosh darn it who DOES? So what does the eeg show please ? My gp told me he wanted to see a copy of it when I had it done. Wondering where to go from here...
Thank-you to you all and I wish you happiness and health.
Sponsor
EStevens64
06-10-2005, 11:43 PM
Dont feel too bad. There are just some idiot neuro's out there with the bedside manner of a rock. I went through the same thing with mine. He tells me he suspects MS strongly then when the MRI comes back normal (had only been experiencing symptoms for a few days and was in my second attack of confirmed Optic Neuritis)a week later he said it wasnt MS and he didnt know what it was. Now I am sitting in a chair and had to have help getting in there because I couldnt walk! My legs were numb and wouldnt do as they were told and my arms were so weak I couldnt hold them up to drive. ...I was game, ok...not ms, fine then what. He only could say he didnt know. I asked if there were other tests beside the MRI. He said no and that short of an autopsy he didnt know what else would. To be honest I was pretty hopped up on steroids ( my 3 day of IV therapy ) and would have, if I had been able... gotten up and walked out! But I waited patiently for them to finish my therapy and then left. He followed up with a letter to my GP and advised him that he thought that the symptoms were in my head! Luckily my GP has known me and been my Dr since I was 13 (now 40) and knows that I am not a hypercondriac. Lol...heck I am the one that told him I had meningitis... went to the hospital...guess what..meningitis! He is the one that was very active in me changing Dr's and finding a good one. He has a brother and sister with MS and is very familiar with the disease. He also examined me a few months later during another attack and my left leg (the one that was numb at the time had diminished reflexes and my right practically kicked the heck out of him when he tested it.
Keep pushing on... If you dont feel the neuro is taking you seriously ( and many dont if the MRI doesnt jump right out and yell MS ) keep finding another. I even told mine. I had another attack of optic neuritis last month and I was still waiting to get in to the MS specialist and the eye dr said it cant wait even a couple of weeks ( I am going blind in my left eye due to so many attacks and little recovery). I had to go back to the jerk! lol but I advised him that I will be taking the IVIG therapy and I am changing Doctors. I told him I wasnt willing to go blind and be under an attack every other month while he waits for my mri film to scream at him and I was certainly NOT going to be providing him with an autopsy!
A good neuro will want you to educate yourself. I certainly did. I even checked in to what all could be causing my symptoms and what tests needed to be done to rule them out. I went to a rheumotologist and ruled out lupus. Had every blood test known to man to rule out everything else.
I am finally getting in to the MS Specialist. I am hoping he has some ideas. I know that there is more testing to be done besides the MRI and I also know that there are some of us lucky souls that will have smaller lesions that are harder to pick up. My symptoms are relatively new. Prior to October 2004 I had nothing other than a previous bout of really bad blurred vision a few months before so I believe I am in the very early stages as does my GP.
Dont let one arrogant jerk deterr you from being informed. Nobody wants MS, but the limbo is the worst. Atleast if you can put a name on it you can move on to what is next.
Keep pushing on... If you dont feel the neuro is taking you seriously ( and many dont if the MRI doesnt jump right out and yell MS ) keep finding another. I even told mine. I had another attack of optic neuritis last month and I was still waiting to get in to the MS specialist and the eye dr said it cant wait even a couple of weeks ( I am going blind in my left eye due to so many attacks and little recovery). I had to go back to the jerk! lol but I advised him that I will be taking the IVIG therapy and I am changing Doctors. I told him I wasnt willing to go blind and be under an attack every other month while he waits for my mri film to scream at him and I was certainly NOT going to be providing him with an autopsy!
A good neuro will want you to educate yourself. I certainly did. I even checked in to what all could be causing my symptoms and what tests needed to be done to rule them out. I went to a rheumotologist and ruled out lupus. Had every blood test known to man to rule out everything else.
I am finally getting in to the MS Specialist. I am hoping he has some ideas. I know that there is more testing to be done besides the MRI and I also know that there are some of us lucky souls that will have smaller lesions that are harder to pick up. My symptoms are relatively new. Prior to October 2004 I had nothing other than a previous bout of really bad blurred vision a few months before so I believe I am in the very early stages as does my GP.
Dont let one arrogant jerk deterr you from being informed. Nobody wants MS, but the limbo is the worst. Atleast if you can put a name on it you can move on to what is next.
EllaJ
06-30-2005, 04:30 AM
Thank you so much for your story ES ! I had problems getting online and only now got your post. I certainly hope you are doing a lot better. I feel very lucky indeed not to have eye involvemnet as yet. (but spelling!?) I guess it all is "in our heads" because that's where they hide the gray matterr lol... but my latest was that my primary sent me to ent re swallowing difficulties. After the few week wait to get in to see him he told me to take pepcid and a decongestant. Really it was such a fast visit that I couldn't remember if he had actually looked down there lol. I phoned and the nurse confirmed that he had,in facdt lookedd in my ear and throat and that I should try Sudafed. Gee never thought of that lol.
Have a great 4th weekend, stay cool...!
Have a great 4th weekend, stay cool...!