Hi, all I am pleased to find a place to chat with others that are going though the same thing I am, though I am sorry you guys are going though it.
I posted this over on undiagnosed, because I haven't been diagnosed yet, waiting on the coordination/Schedule on my MRI to go through. They tried to do a MRI Sept 24th but I guess they can't do it if your screaming to get out of the machine. (Even on anxiety Meds)
I am married and mother of 4 kids. I really haven't had much problems that interfered with my being able to work and do things until about 2 years ago or so? And have been though so many doctors, eye, ear, neruo, nero eye, stomach, er, and, so many, and so many blood tests, and field of vision tests, EKG, Cat scans.
Been reading though some of your posts, where everyone including doctors didn't think anything wrong. However, since I lost left lower field of vision doctors knew something was wrong. I will post what I posted over at undiagnosed, because I am to lazy to type a new post
, but I wanted to introduce myself and say hi and and this is where to do it. This is what I posted over there:
Hi all, I have been told my my doctor and my neurologist they are looking for MS, when I asked them flat out. I am Claustrophobic and the MRI has been a issue though my insurance has finally agreed to a full sedation MRI and they are working on scheduling it, not sure how long it will take. Will be done with and without contrast and brain and spine (I believe, from what I read they are looking for lesions on the spine to confirm Primary Progress MS. Also because that is what my symptoms seem to fit.
First thing I noticed I could not turn left when I skied. (It requires to put weight on right) doctor few years back and they sent me to physical therapy cause they noticed a weakness on my right side.
Second went to eye doctor about a year or so later and I couldn't see her hand on lower left. This involved an Optical neurologist, some kind of other doctor that did field of vision test, and my first and so far only MRI (where I found out I was claustrophobic, they put something in my iv) MRI was normal, Optical neurologist said I had a eye stroke.
Third I just started being sick to my stomach all the time, kind of got the flu then it just turned into constant nausea, more doctors, the put a scope down me, then fed me nuclear eggs and just put my stomach in the machine (thank god only up to tummy) Said I had gastroparesis, they gave me some Medicine (Metoclopramide) worked for about 2 to 3 weeks and just stopped. I was just tired and nausea and doing things became slower and just couldn't do my job anymore so had to quit.
Fourth just noticed a tremor in my thumbs fingers but not very often maybe 2 times a month and does not last to long. And legs aches when I sleep and when I get up after sitting awhile walking is funny, noticing it seems to be getting worse.
Fifth just woke up one day with my eye sight funny and my ear hurting, after 4 or 5 trips to doctor nothing wrong with ear (pain also in cheek/jaw but feels mostly deep in ear), 2 trips to ER, because I was gonna tear my ear off they send me to a ear/nose/throat specialist and he said I had Atypical Trigeminal Neuralgia and put me on Gabapentin, which my my ear stop hurting but didn't stop the muffles that come off and on. And off for another field of vision and I lost my sight now I am up to lose of vision on left eye is 50% and they said I have optic neuritis (not sure if that is the same as an eye stroke)
Oh and then I have had my doctor test me few times for bladder infection and also my blood sugar because I have to keep going to bathroom, all night long to I only sleeping hour or two before I have to get up and use the bathroom ( probably another reason I am tired)
Tired well by the time I get up and dress I am ready to go back to bed, it just wears me out. I used to be able to go to work, go shopping after work, clean the house, cook dinner, do the laundry all in on day. Now I got my kids helping with the cooking and cleaning and housework divided by one thing a day. I was suppose to vacuum yesterday, but couldn't but my son did it for a box of pop tarts.
Memory, well I put this site in my bookmarks and put my user name and password on post it note on my computer or I would not be able to get back here. If I need to do something I have post it notes.
I do not seem to have relapsing-remitting just seem to be going downhill (which suggest Primary Progressive) from what I have read. I do sometimes seem to get really tired flu like symptoms and really tired and blood pressure shoot up right before something breaks in me.
I have had a cat scan was spot on cat scan that neurologist said could be a ms spot, neurologist also said in report he sent me to my doctor, that he noticed my gait was wide, I had some loss of sensation (which I didn't notice) and had my doctor take blood out of me for a bunch of tests (regular blood test all came back normal) also the blood tests that the neurologist wanted done all came back normal.
Another issue I have I also have learning disabilities and ADHD, both which affect the brain, not sure how those would work with ms, but I am guess I will probably have Atypical MS, I learned Atypical means not normal course for the disease.
P.S I am dyslexia, so if I spelled anything wrong please excuse me, I tried to look up everything.
Age is 48, (yes, women)usually I sound younger then I am, and married with four kids, two boys, two girls.
I thought it would be nice to talk to others while I wait for them to get my MRI in the works, it has to be done at hospital and a sedation, machine, hospital, etc all have to be able to do it that day. Hopefully wouldn't be long. I just gotten to the point I know something is wrong I want a name for it.
The two worst thing for me is this ear/face pain (specially when my ear is being stabbed)and being tired I have things I want to do and just can't get them done.
It's nice to meet everyone and sorry for the long post but figured I get it all out in one post
Cmj
I posted this over on undiagnosed, because I haven't been diagnosed yet, waiting on the coordination/Schedule on my MRI to go through. They tried to do a MRI Sept 24th but I guess they can't do it if your screaming to get out of the machine. (Even on anxiety Meds)
I am married and mother of 4 kids. I really haven't had much problems that interfered with my being able to work and do things until about 2 years ago or so? And have been though so many doctors, eye, ear, neruo, nero eye, stomach, er, and, so many, and so many blood tests, and field of vision tests, EKG, Cat scans.
Been reading though some of your posts, where everyone including doctors didn't think anything wrong. However, since I lost left lower field of vision doctors knew something was wrong. I will post what I posted over at undiagnosed, because I am to lazy to type a new post
, but I wanted to introduce myself and say hi and and this is where to do it. This is what I posted over there:Hi all, I have been told my my doctor and my neurologist they are looking for MS, when I asked them flat out. I am Claustrophobic and the MRI has been a issue though my insurance has finally agreed to a full sedation MRI and they are working on scheduling it, not sure how long it will take. Will be done with and without contrast and brain and spine (I believe, from what I read they are looking for lesions on the spine to confirm Primary Progress MS. Also because that is what my symptoms seem to fit.
First thing I noticed I could not turn left when I skied. (It requires to put weight on right) doctor few years back and they sent me to physical therapy cause they noticed a weakness on my right side.
Second went to eye doctor about a year or so later and I couldn't see her hand on lower left. This involved an Optical neurologist, some kind of other doctor that did field of vision test, and my first and so far only MRI (where I found out I was claustrophobic, they put something in my iv) MRI was normal, Optical neurologist said I had a eye stroke.
Third I just started being sick to my stomach all the time, kind of got the flu then it just turned into constant nausea, more doctors, the put a scope down me, then fed me nuclear eggs and just put my stomach in the machine (thank god only up to tummy) Said I had gastroparesis, they gave me some Medicine (Metoclopramide) worked for about 2 to 3 weeks and just stopped. I was just tired and nausea and doing things became slower and just couldn't do my job anymore so had to quit.
Fourth just noticed a tremor in my thumbs fingers but not very often maybe 2 times a month and does not last to long. And legs aches when I sleep and when I get up after sitting awhile walking is funny, noticing it seems to be getting worse.
Fifth just woke up one day with my eye sight funny and my ear hurting, after 4 or 5 trips to doctor nothing wrong with ear (pain also in cheek/jaw but feels mostly deep in ear), 2 trips to ER, because I was gonna tear my ear off they send me to a ear/nose/throat specialist and he said I had Atypical Trigeminal Neuralgia and put me on Gabapentin, which my my ear stop hurting but didn't stop the muffles that come off and on. And off for another field of vision and I lost my sight now I am up to lose of vision on left eye is 50% and they said I have optic neuritis (not sure if that is the same as an eye stroke)
Oh and then I have had my doctor test me few times for bladder infection and also my blood sugar because I have to keep going to bathroom, all night long to I only sleeping hour or two before I have to get up and use the bathroom ( probably another reason I am tired)
Tired well by the time I get up and dress I am ready to go back to bed, it just wears me out. I used to be able to go to work, go shopping after work, clean the house, cook dinner, do the laundry all in on day. Now I got my kids helping with the cooking and cleaning and housework divided by one thing a day. I was suppose to vacuum yesterday, but couldn't but my son did it for a box of pop tarts.
Memory, well I put this site in my bookmarks and put my user name and password on post it note on my computer or I would not be able to get back here. If I need to do something I have post it notes.
I do not seem to have relapsing-remitting just seem to be going downhill (which suggest Primary Progressive) from what I have read. I do sometimes seem to get really tired flu like symptoms and really tired and blood pressure shoot up right before something breaks in me.
I have had a cat scan was spot on cat scan that neurologist said could be a ms spot, neurologist also said in report he sent me to my doctor, that he noticed my gait was wide, I had some loss of sensation (which I didn't notice) and had my doctor take blood out of me for a bunch of tests (regular blood test all came back normal) also the blood tests that the neurologist wanted done all came back normal.
Another issue I have I also have learning disabilities and ADHD, both which affect the brain, not sure how those would work with ms, but I am guess I will probably have Atypical MS, I learned Atypical means not normal course for the disease.
P.S I am dyslexia, so if I spelled anything wrong please excuse me, I tried to look up everything.
Age is 48, (yes, women)usually I sound younger then I am, and married with four kids, two boys, two girls.
I thought it would be nice to talk to others while I wait for them to get my MRI in the works, it has to be done at hospital and a sedation, machine, hospital, etc all have to be able to do it that day. Hopefully wouldn't be long. I just gotten to the point I know something is wrong I want a name for it.
The two worst thing for me is this ear/face pain (specially when my ear is being stabbed)and being tired I have things I want to do and just can't get them done.
It's nice to meet everyone and sorry for the long post but figured I get it all out in one post
Cmj
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