Angela37
10-04-2007, 01:56 AM
Hi, I am seeking information for those more experienced and smarter out there than me! ha ha (bad joke)~!
I am a 37 Y.O. mom. My life is very hard right now! As probably everyone's is here or we wouldnt be here we would be out at the beach or something...
I simply just do not what to think any longer. I was sick alot when I was little, but just like allergies and stuff , yet I missed alot of school. But when I turned 20, for 4 years my life took a sharp turn. My legs begin getting numb, it worsened. It seemed to go from the legs up. Once I would have seizures, maybe 3-4 times a year. I would tell my GP. We lived in a small town. I had lost my first 2 babies during this time to stillbirths, they were just born too preemie and I would seem to lose them after a few months. Still all those years I was never refered to anyone. The doctors there just I guess thought I was making it up, depression whatever... Then at age 25..it just stopped! I cant tell you how relieved I was. I guess I was a fool thinking it would never return. Then I sucessfully managed to have two children, alittle on the wee side of preemie but they were healthy!
By the time I was 27 however, I was up to 254 LBS, needless to say this was more than alittle stressing for my 5ft frame. So I had gastric bypass! Lost 110 lbs. Got alittle attutitude...told my cheatin husband there was the door...flew thru dental hygiene school like a hungry flea on a dog...and proceeded to re-marry...have my most healthiest child, at 7 lbs even. Then I just sorta STOPPPPPPPED at 33! By 35 it was back slooowly creeping its way into my life. Now what was I gonna do...I had a career, my youngest, although healthy was a wandering child, and very hard to deal with ADHD (extreme)/ODD/CD!! He will probably be on American;s Most Wanted or Cops before he is 10! God help us all!!! Needless to say, I think I have bit off more than I can chew--and my husband keeps moving every 2 years with his fast-track job! He wont stay put...and I can not manage my situation with my health status.
My current phyiscan insisted for 2 years I had fibromaylgia. I couldnt bare the pain. I started going into pain management without his consent having spinal blocks which didnt help. One year later a kindly OTHER pain management doctor did a MRI and one of those electrical impulse things that zap you--Low and behold...after how many years now--- it come back positive with Motor, Sensory and I am really not sure if she said Automaic or not Per Neuropathy. She said she wasss very surprised since I had not other health problems and I am not diabetic...well she said like 65% disability, so I can only work 1 day week now (I force myself), life is pretty choatic...I cant do art anymore. I used to type 70wpm, now barely 20...is this going to go away again? I dont think I can stand having this for like another 10 years. I have that glove/slipper thing...(where you feel like your wearing tight gloves and slippers), she thinks my PN is due to my Gastric Bypass...I am anemic, so I started B-12 injections, iron infusions and vita D 50,000 iu everyweek...that parts better now....but noo nooo I cant convience her this is what I had before...it seemed worse then, but maybe because of my weight? This is worse in some ways than before, but different.
The interesting side note is this. My first cousin who is 2 years younger just came back with all tests postitive for MS. My doctor says there totally different. But I both read they are damaging the mylien sheath, so arent they similar....I cant tell you how lost and alone and confused in all this...I have been under her treatment for over a year. Lyrica helps, I am stable, but not at a tolerable level. I take alternations of Tramadol and Opana, I have to constantly alternate them. They bad thing is my stomach doesnt absorb anymore, it passes right through...on those days I dont absorb, it doesnt matter what I take or how much. I could take 100 and it wouldnt matter...so I have to fine tune everything. By the 2nd one I know if I am absorbing and then if not...forget it ...NOTHING will help!
I asked my doctor last week if I had told her about my cousin. That I thought the two diseases were similar, she asked if I thought my condition was going into the MS "I told her it wasnt that, it just sounded like the two were similar"....she told me that I could not get MS if I had PN. She also told me, I would gradually get worse, it could not go into remission. I just dont know what to do. Also, does anyone have any suggestions AND do you know if there are ppl diagnoised with PN as young as 20? Sometimes I wonder from what I read if I dont have MS, but I don't know what the differences are, they all sound so similar. I will say the only thing I have had done, is the positive elec conduction test and the brain MRI, and the bloodtests.
Then I read Lyme disease acts like MS and NP...I dont know....any feedback would be appreciated...I am just threw with this...I just wanna head for the beach and be done with this!
Thanks!
Gigi
I am a 37 Y.O. mom. My life is very hard right now! As probably everyone's is here or we wouldnt be here we would be out at the beach or something...
I simply just do not what to think any longer. I was sick alot when I was little, but just like allergies and stuff , yet I missed alot of school. But when I turned 20, for 4 years my life took a sharp turn. My legs begin getting numb, it worsened. It seemed to go from the legs up. Once I would have seizures, maybe 3-4 times a year. I would tell my GP. We lived in a small town. I had lost my first 2 babies during this time to stillbirths, they were just born too preemie and I would seem to lose them after a few months. Still all those years I was never refered to anyone. The doctors there just I guess thought I was making it up, depression whatever... Then at age 25..it just stopped! I cant tell you how relieved I was. I guess I was a fool thinking it would never return. Then I sucessfully managed to have two children, alittle on the wee side of preemie but they were healthy!
By the time I was 27 however, I was up to 254 LBS, needless to say this was more than alittle stressing for my 5ft frame. So I had gastric bypass! Lost 110 lbs. Got alittle attutitude...told my cheatin husband there was the door...flew thru dental hygiene school like a hungry flea on a dog...and proceeded to re-marry...have my most healthiest child, at 7 lbs even. Then I just sorta STOPPPPPPPED at 33! By 35 it was back slooowly creeping its way into my life. Now what was I gonna do...I had a career, my youngest, although healthy was a wandering child, and very hard to deal with ADHD (extreme)/ODD/CD!! He will probably be on American;s Most Wanted or Cops before he is 10! God help us all!!! Needless to say, I think I have bit off more than I can chew--and my husband keeps moving every 2 years with his fast-track job! He wont stay put...and I can not manage my situation with my health status.
My current phyiscan insisted for 2 years I had fibromaylgia. I couldnt bare the pain. I started going into pain management without his consent having spinal blocks which didnt help. One year later a kindly OTHER pain management doctor did a MRI and one of those electrical impulse things that zap you--Low and behold...after how many years now--- it come back positive with Motor, Sensory and I am really not sure if she said Automaic or not Per Neuropathy. She said she wasss very surprised since I had not other health problems and I am not diabetic...well she said like 65% disability, so I can only work 1 day week now (I force myself), life is pretty choatic...I cant do art anymore. I used to type 70wpm, now barely 20...is this going to go away again? I dont think I can stand having this for like another 10 years. I have that glove/slipper thing...(where you feel like your wearing tight gloves and slippers), she thinks my PN is due to my Gastric Bypass...I am anemic, so I started B-12 injections, iron infusions and vita D 50,000 iu everyweek...that parts better now....but noo nooo I cant convience her this is what I had before...it seemed worse then, but maybe because of my weight? This is worse in some ways than before, but different.
The interesting side note is this. My first cousin who is 2 years younger just came back with all tests postitive for MS. My doctor says there totally different. But I both read they are damaging the mylien sheath, so arent they similar....I cant tell you how lost and alone and confused in all this...I have been under her treatment for over a year. Lyrica helps, I am stable, but not at a tolerable level. I take alternations of Tramadol and Opana, I have to constantly alternate them. They bad thing is my stomach doesnt absorb anymore, it passes right through...on those days I dont absorb, it doesnt matter what I take or how much. I could take 100 and it wouldnt matter...so I have to fine tune everything. By the 2nd one I know if I am absorbing and then if not...forget it ...NOTHING will help!
I asked my doctor last week if I had told her about my cousin. That I thought the two diseases were similar, she asked if I thought my condition was going into the MS "I told her it wasnt that, it just sounded like the two were similar"....she told me that I could not get MS if I had PN. She also told me, I would gradually get worse, it could not go into remission. I just dont know what to do. Also, does anyone have any suggestions AND do you know if there are ppl diagnoised with PN as young as 20? Sometimes I wonder from what I read if I dont have MS, but I don't know what the differences are, they all sound so similar. I will say the only thing I have had done, is the positive elec conduction test and the brain MRI, and the bloodtests.
Then I read Lyme disease acts like MS and NP...I dont know....any feedback would be appreciated...I am just threw with this...I just wanna head for the beach and be done with this!
Thanks!
Gigi
Sponsor
MSJayhawk
10-04-2007, 11:52 AM
What you need is to see an MS Doctor who can help weed out the symptoms through a battery of tests. This should help you. There are any number of problems that could show-up and only a trained doctor can tell for sure. Check with your doctor and get a referral to see a MS Doctor (A Neurologist). Paducah is a nice town. I found one listing for a Dr. Barebo in Paducah. Most of the other listings are for Lexington or Louisville. There are a couple in Pikeville and Ashland.
MSNik
10-04-2007, 09:13 PM
Hey Gigi.
You do have it rough right now, dont you? But, I have to say, I love your attitude and your sense of humor.
First of all, MS isnt hereditary...although, immune diseases MIGHT be..they dont really know the whole story on MS...but just because your cousin has it, it doesnt increase your chances of having it overall...Secondly, fibromyalgia, although a very real disease, is also a catch all phrase for doctors who dont know how to diagnos anything else and dont truly understand nerve pain. I hate to say it, but its the first thing they come up with- and they usually stick with it. Its actually GOOD that you are moving around and seeing different doctors at this point, maybe youll get lucky and find a good one...not to say you DONT have Fibro- you very well MIGHT, but you also may have gone UNdiagnosed for years while suffereing with something else....Lyme disease is a very real disease, which really does Mimic MS in many ways...again, many doctors do a standard blood test, get a negative and rule it out...thats not smart. There is one lab, called IgeneX, you can find info on it by searching on it, or reading the Lyme board here- that particular lab does a test which is much MUCH better at finding positive LYME results, and NOT false negatives....over 90% of Western Blood tests, the standardized test done in labs across the US are negative for Lyme, when it should be positive. Igenex is the very best at getting "REAL" results...
MS, is another one which is almost as hard to dx.....MS is usually dx when all else is ruled out....there are many tests, some of which you have had which can be done..a spinal tap IS in order at this point, and how long ago was that MRI? MRIs can change weekly...but if it has been more than 6 months since your last one- considering getting someone to order you another....
Fibro is usually managed by a ruematologist, while MS is managed by a Neurologist...what kind of doctor are you currently seeing? It would be a good time to take those tests results to an MS doc, a specific Neurologist who only sees MS patients, and have him/her evaluate you again....
wishing you well.....and keep us posted.
Hugs,
Nikki
You do have it rough right now, dont you? But, I have to say, I love your attitude and your sense of humor.
First of all, MS isnt hereditary...although, immune diseases MIGHT be..they dont really know the whole story on MS...but just because your cousin has it, it doesnt increase your chances of having it overall...Secondly, fibromyalgia, although a very real disease, is also a catch all phrase for doctors who dont know how to diagnos anything else and dont truly understand nerve pain. I hate to say it, but its the first thing they come up with- and they usually stick with it. Its actually GOOD that you are moving around and seeing different doctors at this point, maybe youll get lucky and find a good one...not to say you DONT have Fibro- you very well MIGHT, but you also may have gone UNdiagnosed for years while suffereing with something else....Lyme disease is a very real disease, which really does Mimic MS in many ways...again, many doctors do a standard blood test, get a negative and rule it out...thats not smart. There is one lab, called IgeneX, you can find info on it by searching on it, or reading the Lyme board here- that particular lab does a test which is much MUCH better at finding positive LYME results, and NOT false negatives....over 90% of Western Blood tests, the standardized test done in labs across the US are negative for Lyme, when it should be positive. Igenex is the very best at getting "REAL" results...
MS, is another one which is almost as hard to dx.....MS is usually dx when all else is ruled out....there are many tests, some of which you have had which can be done..a spinal tap IS in order at this point, and how long ago was that MRI? MRIs can change weekly...but if it has been more than 6 months since your last one- considering getting someone to order you another....
Fibro is usually managed by a ruematologist, while MS is managed by a Neurologist...what kind of doctor are you currently seeing? It would be a good time to take those tests results to an MS doc, a specific Neurologist who only sees MS patients, and have him/her evaluate you again....
wishing you well.....and keep us posted.
Hugs,
Nikki
Angela37
10-05-2007, 04:53 PM
The only things thus far I have had a definite comfirmation on is
Perephial Neuropathy. The nerve conduction came back (i think its an EMG)
anyway came back with really high scores. If that comes back with a high score could it mean something else other than PN? Angi
Perephial Neuropathy. The nerve conduction came back (i think its an EMG)
anyway came back with really high scores. If that comes back with a high score could it mean something else other than PN? Angi