Don't my symptoms have to be SOMETHING??

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Don't my symptoms have to be SOMETHING??

Postby FLNatalie » Wed Apr 02, 2014 2:38 pm

I began having symptoms in early February which at first alarmed me, but which I quickly dismissed as being something benign. I was having trouble seeing in a vague sort of way and I had two days of numbness in my extremities and face. Then a month later, while the vision had deteriorated into double vision and an extreme sensitivity to light, the numbness returned. Since that time, I have experienced heat intolerance, confusion, random muscle weakness and fatigue, more and more numbness and other paresthesia symptoms (burning, tingling, electric-shock type feelings, etc.), and dizziness.

All of my vision and paresthesia symptoms generally get worse in the evenings.

My PCP referred me to a neurologist (an MS specialist), but I wasn't having any symptoms other than the vision issues at the time of the appointment. The neuro did all of the usual tests and said his level of suspicion for MS was low, but he could see that I was clearly concerned so he ordered an MRI and an SSEP. My PCP ordered bloodwork and referred me to an opthalmologist. I haven't heard anything back on the bloodwork, but I did see the opthalmologist today.

She said my optic nerves looked healthy, my vision was fine, and that she couldn't see anything that would explain why I have double vision.

I am so frustrated with no one being able to find anything and don't know which I fear more - finding something on the MRI or not finding any explanation for my symptoms. I don't want a chronic neurodegenerative disorder, but if I have one, I want them to find it, or at least find something to explain why I'm having such weird symptoms.
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Re: Don't my symptoms have to be SOMETHING??

Postby THX1138 » Wed Apr 02, 2014 3:10 pm

I'm sorry to here about the tough situation.
Now let's get working on figuring this out.
You (and everyone here) needs to be aware of the information in this video and book: general-discussion-f1/topic24503.html

I wish you the best
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Re: Don't my symptoms have to be SOMETHING??

Postby jimmylegs » Wed Apr 02, 2014 3:51 pm

hi and welcome :) have your docs sent you for any nutrient testing?
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Re: Don't my symptoms have to be SOMETHING??

Postby FLNatalie » Wed Apr 02, 2014 4:23 pm

No, jimmylegs. I think it was just the standard ANA, Thyroid, Lyme, Sed Rate, CBC, CRP, C3, C4, etc. I had that done on Friday and still haven't heard anything, even though my PCP said he would definitely call one way or the other.

I have a feeling he may not be open to looking at nutrient testing - do you have any advice for how I can convince him?
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Re: Don't my symptoms have to be SOMETHING??

Postby jimmylegs » Wed Apr 02, 2014 4:53 pm

hi ok. where are you located, roughly? your options depend to a degree on your local system. where i live it's either convince the doc and have the tests mostly paid by the system, or go pay for a naturopath and get the tests done and paid for privately. in the states, if the doc won't go for it, there's the online ordering option (lucky!).

when i started needing more tests i already had a little bit of testing history due to my diet. for anything new i always took a relevant scientific paper or two in with me, and i was lucky the doc was receptive.
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Re: Don't my symptoms have to be SOMETHING??

Postby FLNatalie » Wed Apr 02, 2014 4:56 pm

I live in the Miami area. I do have contact with a naturopath, but I haven't been evaluated by him yet.

I've never liked seeing doctors and this experience has reminded me one of the reasons: they always seem to be in a hurry. I can tell you that I am not the kind of person to force an issue, so I hope it doesn't come to that!
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Re: Don't my symptoms have to be SOMETHING??

Postby jimmylegs » Wed Apr 02, 2014 5:05 pm

ok i think for you the online testing option might be the best bet. you'd probably have to be firm even with the naturopath in order to just get the tests you want and no extras added on!

a few links that might be helpful
http://www.lef.org/Vitamins-Supplements ... -Test.html
http://www.lef.org/Vitamins-Supplements ... -Test.html
http://www.lef.org/Vitamins-Supplements ... -Test.html

there are probably other similar options local to you
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Re: Don't my symptoms have to be SOMETHING??

Postby FLNatalie » Wed Apr 02, 2014 5:51 pm

Thanks for the links. I've been lurking here for awhile do I had thought about going the online route.

Are there vitamin deficiencies that cause things like heat intolerance? double vision?
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Re: Don't my symptoms have to be SOMETHING??

Postby FLNatalie » Thu Apr 03, 2014 2:50 am

I finally watched the B12 video. It is very well done and I'm convinced I should pursue that angle. Thank you THX.
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Re: Don't my symptoms have to be SOMETHING??

Postby jimmylegs » Thu Apr 03, 2014 3:38 am

b12 is just one of many things to consider.. and deficiencies are known to cause a variety of neurological symptoms. b12 was the first one i looked at. i tracked it for years prior to my dx in 2006. i didn't take things seriously enough at first, and b12 turned out to be the tip of a nasty iceberg. if you haven't seen it before, you might find this interesting too: http://www.thisisms.com/ftopict-2489.html
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Re: Don't my symptoms have to be SOMETHING??

Postby FLNatalie » Thu Apr 03, 2014 3:05 pm

One thing that has always puzzled me with my symptoms is how they come and go from day to day. It's the one thing that doesn't seem very MS-like, but I can see how it might be related to fluctuations in my diet if my system were very sensitive to the lack of one certain vitamin or another.

Does anyone else actually have MS and still see variability throughout the day and from day to day in their symptoms?
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Re: Don't my symptoms have to be SOMETHING??

Postby Anneke » Thu Apr 03, 2014 3:23 pm

You are not alone! I am going through almost exactly what you have described!! The only difference for me I think is my Dad has MS... So I may be predisposed to having it. :( I have a appointment with the Nuro this afternoon, I am so nervous they are going to fob me off. This is my first visit. If he doesn't order a MRI ASAP I think I will have a nervous brake down, been waiting since before Christmas to see them.
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Re: Don't my symptoms have to be SOMETHING??

Postby FLNatalie » Thu Apr 03, 2014 3:44 pm

Anneke, I sure hope you get some answers soon. Let us know how it goes!
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Re: Don't my symptoms have to be SOMETHING??

Postby jimmylegs » Thu Apr 03, 2014 4:03 pm

i used to have my issues come and go, and i could tie whether i was doing poorly or not very specifically to whether i had taken a b12 supplement or not. i was playing with fire and didn't know it.

one day the intermittent use of b12 stopped working and not long after that i ended up getting diagnosed. it took me years to figure out how many other things had been more quietly going very wrong, and i still consider myself to be only half way out of the hole i dug for myself in the years prior to dx.
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Re: Don't my symptoms have to be SOMETHING??

Postby FLNatalie » Fri Apr 04, 2014 4:32 am

Jimmylegs - all the regular medical stuff is adding up financially right now with copays and coinsurance, so UT may be awhile before I can manage the testing. Is there any benefit to going ahead with a b12 supplement before such a time?

I know you've said you felt some of your problems stemmed from bring vegan. My DH and I are not full-time vegans, but our church prescribes fasting from all animal products for the equivalent of about half the days of each year. I can see how that might deplete our b12 levels.
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