Question about PPMS...

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Question about PPMS...

Postby SallyDC » Wed May 07, 2008 6:02 pm

For those of you that have PPMS, can I ask how it started? I'm still in the pre-diagnosis phase and i'm scared it might be the progressive kind. I know it's a little bit less likely because i'm 22, female, and it started with my eyes, but my eyes haven't resolved yet and as i mentioned before really the only other symptom would be getting achey/weak legs (only) around that time of the month (that i've never had before).... because i read gradual weakness and aching legs can mean progressive i'm terrified its the progressive kind. i also wonder if thats due to lack of magnesium (which apparently causes aching and weak legs) at that time and i understand people with MS tend to have magnesium deficiencies, so maybe it's just that and nothing to do with my spinal chord? I just feel like since i haven't had a real relapse i can't see why i'd be diagnosed as RRMS. i can walk fine, coordination and balance are fine, no vertigo or anything. any advice would be greatly appreciated!
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Postby gwa » Thu May 08, 2008 6:14 am

Sally,

Seventy five% of people who get eye problems do not develop MS, so the odds are in your favor.

Also, if it is possible that your achy legs are due to a magnesium deficiency, start taking some calcium, Vitamin D and magnesium supplements.

If these are the only two symptoms that you have, I have no idea why a diagnosis of MS would even be a consideration for you. Is your doctor suggesting the MS or are you reading online and trying some self diagnosis?

gwa
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ppms

Postby mickb » Thu May 08, 2008 9:54 am

Hi Sally:

I was dx'd in 2001 (at age 49) with ppms. Looking back, my first symptoms were fatigue. I figured I was just getting old / stressful job / etc. Then I started to limp after walking fo awhile - then weakness in my left hand and arm. By the time I got an MRI the damage was well underway. You were smart to get checked out. It's also good you are employed and have taken out long term disability Ins. (good advise for everyone). If you don't get any relief from supplements keep complaining (no one else will). I suspect gwa has the right idea and you have something else going on. Just keep learning and asking questions and trying all the basic stuff until you sort it out. I don't post very often but I visit the site constantly, as do others. Hope this helps a little.

Mick
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Postby SallyDC » Thu May 08, 2008 2:30 pm

gwa - in response to your question about whether it's a suggestion of my doctor or a self diagnosis, i'd have to see it's probably a combination of both. I went to my opthomalogist complaining of vision problems, he didn't see anything (no swelling of the optic nerve or anything) BUT when i told him it got worse after i worked out or if i was hot that's when he thought it might be a good idea. To be honest if it didn't get hot after working out i wouldn't be suspicious of MS either, but this really almost settles it for me. And from what ive read- apparently often times there can be "subclinical" optic neuritis in MS patients, where nothing seems out of the blue upon exam but the patient (i.e. me) keeps complaining something is off and upon MRI they see a lesion or inflammation of the optic nerve. As far as my legs are concerned - i've picked up some supplements today so hopefully that will solve that issue! I've got an MRI next saturday so i'm hoping i'll get some more definitive answers then.
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Postby SallyDC » Thu May 08, 2008 2:33 pm

and mick- thanks for your information!! It has definitely helped me and I appreciate your replying even though you say you don't post often!
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Postby TwistedHelix » Sun May 11, 2008 5:34 am

Hi Sally, I think Mick and gwa's comments are spot on: although I can understand why you're concerned, you may be worrying yourself into believing you have PPMS when the cause of your symptoms is much more prosaic. Especially the timing of your symptoms – coincident with your periods – seems clearly to point to something else… I hope that's the case, and that the MRI eases your fears.
If it doesn't, well for what it's worth I've been a member of that particular club for over 20 years now. You have many more weapons at your disposal in the form of diet, supplements and regimens – and of course huge amounts of information – that simply weren't around in 1986, and you can use those to take positive, preemptive action in the hope of gaining more time to a) enjoy your life and b) allow those scientists to come up with something.
Incidentally my first symptom was my left leg which began to drag reluctantly after I had walked for a few miles. Of course in the surgery my walking was always fine so one doctor took an interest in the wear patterns of my shoes to get some clues about my gait – still took them two years to diagnose me though!
I had a few very occasional visual disturbances more like migraine auras than anything else, and a phenomenon which might just be poor distance vision. If I try to focus on something small in the distance the object looks somehow " rippling" or lively. Or if I try to look at an insect on a plain wall a few feet away it appears to be wriggling even if it's a squashed fly. My glasses help, though, so it's probably just my eyesight,
Dom
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Postby SallyDC » Sun May 11, 2008 12:08 pm

Thanks Dom!! You're comment meant a lot to me! I am trying to keep positive and not jump to any conclusions - and I constantly remind myself that you're right in that it's not 1986 anymore and the knowledge and medicines and research that is going on now is much better these days!
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