starlet32079
04-19-2005, 01:34 AM
Just wondering if anyone here was mis-dx'ed with chronic fatigue syndrome before the dx was made and you found out you had MS? My doc doesn't think that I need to have an MRI or anything to check for lesions. I was checked for a thyroid problem, anemia, and diabetes. All of the tests came back neg. I don't know if I believe in chronic fatigue syndrome...I am chronicly tired with alot of problems going on but I feel like CFS is a excuse docs give when they don't know what else to do.
My mother has had MS for a long time and I know you don't inherit this disease but I also know that I am 10 times more likly to get it. I have alot of the same symptoms my mom had. Fatigue, memory loss, and vision are my biggest complaints.
What do you think...any suggestions would be great.
Thanks :wave:
My mother has had MS for a long time and I know you don't inherit this disease but I also know that I am 10 times more likly to get it. I have alot of the same symptoms my mom had. Fatigue, memory loss, and vision are my biggest complaints.
What do you think...any suggestions would be great.
Thanks :wave:
Sponsor
painsucks
04-19-2005, 12:58 PM
Hi Starlet :wave:
I was diagnosed with fibromyalgia (close runner up to CFS) by my PCP and treated for that for several years before finally after the urging of my husband and best friend I went to see a neuro. My PCP kept saying he didn't think it was MS but it was. Is it your PCP that is telling you that you don't need to have an MRI etc.? If I were you, I'd find a neuro and get an appointment for a second opinion. I'm glad I did, it is better to know, and to do what you can to slow the MS down (I am taking Copaxone) than to always be wondering. Take care and good luck. Let us know what you find out. ;)
I was diagnosed with fibromyalgia (close runner up to CFS) by my PCP and treated for that for several years before finally after the urging of my husband and best friend I went to see a neuro. My PCP kept saying he didn't think it was MS but it was. Is it your PCP that is telling you that you don't need to have an MRI etc.? If I were you, I'd find a neuro and get an appointment for a second opinion. I'm glad I did, it is better to know, and to do what you can to slow the MS down (I am taking Copaxone) than to always be wondering. Take care and good luck. Let us know what you find out. ;)
starlet32079
04-20-2005, 01:59 AM
Thanks for your reply, I feel like know one on this board wants to give me the time of day. I am so glad that someone has been through this same thing. My pcp also told me I have fibro too. I just don't know if I believe in that CFS & Fibro stuff. Thanks again for your reply :angel:
Donnalynne
04-20-2005, 07:17 AM
Hi startlet, My problems started 4+ years ago with a sudden onset of tingling and numbness all on the left side of by body, the doctors firstly suspected a stroke but after 9 days in hospital with no change and all blood tests coming back normaly, the stroke was ruled out and was told to go home and get used to it. Any way as time went on I felt just as you do, with all the same symptoms. Sometimes I was good and at other times I just felt like complete Cr**!. I was always at the doctor and had the same bloods taken as you, which all kept coming back normal. Doctors then caugh on to my past depressions and put everything down to that, I was told to have counciling, take anti-depressants and the list goes on...... Any way they finally said it was most likely ME (same as you) but I kept pushing for answers. Because of my persistance I finaly had a CT scan done, which was not completely conclusive so I pushed for an MRI, (which was mentioned 4yrs earlier but was never done). The results where conclusive of MS and Not ME.
What i'm trying to say to you is this, if your not happy with your dx then it's your right to have other tests or scans done and also to see your Gp's notes.
I also finaly asked for a copy of all my notes for the last 4 yrs and found that all the information I had been given on my visits had not been taken correctly, therefore they misdiagnosed me.
I hope you get the answers and help you need to ease your own mind, somtimes we have to push and push to get them.
Good luck & chin up
Donnalynne
What i'm trying to say to you is this, if your not happy with your dx then it's your right to have other tests or scans done and also to see your Gp's notes.
I also finaly asked for a copy of all my notes for the last 4 yrs and found that all the information I had been given on my visits had not been taken correctly, therefore they misdiagnosed me.
I hope you get the answers and help you need to ease your own mind, somtimes we have to push and push to get them.
Good luck & chin up
Donnalynne
painsucks
04-20-2005, 03:29 PM
Hi Starlet,
I thought of a couple more things I wanted to mention to you. First, you may have to "shop" to find a neuro that will help you. The first one that I saw, after I told her I had been diagnosed with fibro, told me that there was no such thing as fibro and that I must be depressed and "it" was all in my head...needless to say, I never saw her again. I was so discouraged after that that I didn't go to another neuro for a couple more years. Again after much urging from my husband and best friend, I went to see the neuro that I still see and he is wonderful, along with everyone in his office. He was recommended by a co-worker with MS. So what I'm trying to say here is...find a doctor that will work with you as a team, after all you are paying him, you should be the boss!
Second, when you have your MRI, ask that it be done with and without contrast. Many times if there are lesions on your brain, they will not show up if contrast is not used.
Hope you're doing well today. Please stay in touch.
Debi :)
I thought of a couple more things I wanted to mention to you. First, you may have to "shop" to find a neuro that will help you. The first one that I saw, after I told her I had been diagnosed with fibro, told me that there was no such thing as fibro and that I must be depressed and "it" was all in my head...needless to say, I never saw her again. I was so discouraged after that that I didn't go to another neuro for a couple more years. Again after much urging from my husband and best friend, I went to see the neuro that I still see and he is wonderful, along with everyone in his office. He was recommended by a co-worker with MS. So what I'm trying to say here is...find a doctor that will work with you as a team, after all you are paying him, you should be the boss!
Second, when you have your MRI, ask that it be done with and without contrast. Many times if there are lesions on your brain, they will not show up if contrast is not used.
Hope you're doing well today. Please stay in touch.
Debi :)