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symptoms for 18 years..afraid to get an ms diagnosis
18 years ago I had bladder problems. I went to urologists and gynocologists and ended up at a neurologist because I had some numbness in the groin area once or twice. ( also had surgery to remove a cyst on ovaries). Anyway, the neurologist thought I might have ms because of my bladder problems, my age (at the time I was 23), being female, and I had once had a Babinski reflex which is where they test your toe reflexes. ANyway, supposedly it only happened one, but i destinctly remember him scrapping the bottom of my foot (it was sort of painful) and dont remember my ms specialist testing it that way. My MRI's were normal (both brain and spine). I then went to NY to an MS specialist at Columbia and he did a physical neurological exam, blood work, and a spinal tap all which were normal. Now they say that 90% of MS patients have a positive spinal tap, and with norrmal mris you would think my odds were pretty good. WEll, he did not think I had ms, so I stoped going to drs. WEll since then my only problems have been vision. Vision is a big MS symptom. ANyway, It happened 5 years ago. I have many many floaters,
Sounds like you have the usual feelings that go with having an illness -- worrying about telling others around you. I knew I had the CFS and that it was a totally different life from me for at least a while, but for the first time in my life I barely talked about it for several months except to my sister. (I'm usually very open.)
Maybe if you find out, but take your time opening up about it, in the while you'll figure out how to ease your husband into it? IF you have MS. Assuming he really will flip and it's not just you're tendency to worry. You're gut is so sure about it so it might be right, but I've known people to worry about an illness only to find out it was something else.
When I said stops dead in its tracks, I know at least two people who took drugs, one as part of a study years ago so you know the diagnosis was accurate, with no reoccur symptoms since many years later.
Something else that just popped into my head. I've read instances of folks clearing up what was diagnosed as MS with all the relevant symptoms when they removed aspartame (fake sugar) from their diet. Maybe you'll get lucky and that's what it is?
Your right that MS is not a thrill of a diagnosis, but you don't know if you have it yet. And you can manage for it better if you do know. As far as telling people, I would take it slowly and check in with other people who have it first to get used to wearing the diagnosis. I know when I first tried to talk with people, I was so knew to the idea of long term illness myself that I didn't always explain myself well. Your kids will love you no matter what - and kids are always stronger than we think.
Right now the stress of worrying can only be adding to whatever condition you have. I trust though that when you are ready and it's right for you -- you'll get it checked out.
Cheri
Maybe if you find out, but take your time opening up about it, in the while you'll figure out how to ease your husband into it? IF you have MS. Assuming he really will flip and it's not just you're tendency to worry. You're gut is so sure about it so it might be right, but I've known people to worry about an illness only to find out it was something else.
When I said stops dead in its tracks, I know at least two people who took drugs, one as part of a study years ago so you know the diagnosis was accurate, with no reoccur symptoms since many years later.
Something else that just popped into my head. I've read instances of folks clearing up what was diagnosed as MS with all the relevant symptoms when they removed aspartame (fake sugar) from their diet. Maybe you'll get lucky and that's what it is?
Your right that MS is not a thrill of a diagnosis, but you don't know if you have it yet. And you can manage for it better if you do know. As far as telling people, I would take it slowly and check in with other people who have it first to get used to wearing the diagnosis. I know when I first tried to talk with people, I was so knew to the idea of long term illness myself that I didn't always explain myself well. Your kids will love you no matter what - and kids are always stronger than we think.
Right now the stress of worrying can only be adding to whatever condition you have. I trust though that when you are ready and it's right for you -- you'll get it checked out.
Cheri
Hi cheri...
Ive heard that the treatments for ms are very expensive and they dont know the long term effects. Also that it doesnt stop it dead in its tracks but it does decrease the number of attacks and maybe decreases the severity and slows the disease down. Ive also read that some doctors dont think you need to treat a mild case of it because the drugs can be somewhat toxic. And they dont always help everyone.
Anyway, my vision problems are floaters, streaky vision, meaing when I wave my hand in front of my face my fingers are streaky,
one pupil is larger than the other minimal, but hteres a sllight difference. I dont think one dialates as large as the other, those are the main symptoms, but also when i got the chicken pox when i was 23 (im 38 now) my vision became cloudy in one eye. The eye dr. thought at the time it was because of the chicken pox virus, but since them they have discovered that viruses can flare up ms symptoms, and the cloudiness in one eye is definatly a symptom of optic nueritis...at least im almost 100% certain...
I guess im also afraid of being diagnosed because i dont want my kids worrying about their mom being sick and im afarid of what others might think and even my husband..what if he couldnt take it and leaves me??? Cant you tell I worry about everything.
Thanks for responding to me and i hope i hear back from you
Ive heard that the treatments for ms are very expensive and they dont know the long term effects. Also that it doesnt stop it dead in its tracks but it does decrease the number of attacks and maybe decreases the severity and slows the disease down. Ive also read that some doctors dont think you need to treat a mild case of it because the drugs can be somewhat toxic. And they dont always help everyone.
Anyway, my vision problems are floaters, streaky vision, meaing when I wave my hand in front of my face my fingers are streaky,
one pupil is larger than the other minimal, but hteres a sllight difference. I dont think one dialates as large as the other, those are the main symptoms, but also when i got the chicken pox when i was 23 (im 38 now) my vision became cloudy in one eye. The eye dr. thought at the time it was because of the chicken pox virus, but since them they have discovered that viruses can flare up ms symptoms, and the cloudiness in one eye is definatly a symptom of optic nueritis...at least im almost 100% certain...
I guess im also afraid of being diagnosed because i dont want my kids worrying about their mom being sick and im afarid of what others might think and even my husband..what if he couldnt take it and leaves me??? Cant you tell I worry about everything.
Thanks for responding to me and i hope i hear back from you
There are treatments for MS and for some people it will stop it dead in it's tracks. So knowing can be better than not knowing. And what if you don't have it? Then you can finally stop worrying over it.
FYI, I've known several people who later were certain they didn't have it but had been diagnosised with "atypical MS" as they searched for answers because the doctors didn't know what else to say. So I wouldn't take atypical MS as a definitive diagnosis of MS either.
It sounds like you are just frozen around the idea of MS. What if you have something totally different that can be treated? It'd be unfortunate to live with something treatable, because of fear of something else that you don't have.
Your post got cut over, so I can't see your description of your vision problems. There's only one or two very specific MS vision problems. Most vision problems aren't MS. And the problems that are common to MS can actually exist in NON-MS patients too (at least in two people I know).
Good luck!
Cheri
FYI, I've known several people who later were certain they didn't have it but had been diagnosised with "atypical MS" as they searched for answers because the doctors didn't know what else to say. So I wouldn't take atypical MS as a definitive diagnosis of MS either.
It sounds like you are just frozen around the idea of MS. What if you have something totally different that can be treated? It'd be unfortunate to live with something treatable, because of fear of something else that you don't have.
Your post got cut over, so I can't see your description of your vision problems. There's only one or two very specific MS vision problems. Most vision problems aren't MS. And the problems that are common to MS can actually exist in NON-MS patients too (at least in two people I know).
Good luck!
Cheri
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