Two Unofficial Diagnoses

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

Two Unofficial Diagnoses

Postby geekychick3000 » Mon Feb 17, 2014 6:32 pm

I've had two unofficial diagnoses. One at the ER, and again today with the neurologist. I am waiting to have my MRI as soon as they can get me in. I'm not one for checking symptoms online, I'm also not one to go to the doctor until I think something is seriously wrong, so I walked around, stumbling at times, with one side of my body numb, and losing control often for around a week. I finally attempted to make an appointment with my PCP, but she sent me straight to the ER. She had the same suspicions the ER doctor and neurologist have. All other brain issues have been ruled out. Other conditions as well. The only thing left, and the only thing that fits completely is MS. According the the doctors that is. I'm still trying to wrap my head around it, I'm staying calm because even thought they both unofficially agree, I've yet to have an MRI, so there is still hope, but very little. I know it's not the worst thing it could be, I do understand that, but I would rather it be nothing. I had this happen before when I was around 7 months pregnant, but my doctors assumed my daughter was pushing on a nerve, after they had ruled out dangerous pregnancy related conditions. Because it got better in a little over a month or so, no one checked it out again. :/

Symptoms are as follows: Numbness and weakness on the entire right side. Loss of balance. Dizzy spells. Trouble with sight from right eye, it's almost like a grey hazy or something. Hard to explain. Problems with speech. Stumbling. Difficulty gripping or holding on to objects. Issues with memory. Trouble swallowing, almost like it catches for a few seconds. Exhaustion. I feel like I NEVER sleep. I wish I could just sleep all day long. I have pretty much lost my appetite. I have no hunger pains or anything. If I did not keep up with the time, I wouldn't eat or drink at all. I know I am more than likely forgetting something, but these are the main things I remember.

One thing I thought was curious, the right side of my abdomen is very numb. I cannot feel warmth, touch, sharp things, things being clipped on the skin, none of that, BUT if something cold touches that area, it hurts. I don't mean uncomfortable, I mean it is horrible pain. Has ANYONE had that?

I honestly know nothing of this condition, other than what I've been told is "normal" for the condition. I thought I was having some other issue and even emailed my chiropractor to see if it could be next related, but he said no and to call 911. SO, I am waiting now, but I would like to hear some positive stories about how certain things have helped them.

I don't know how treatments work, I assume you have to take pills or something? What do you do if it gets bad again or does it just not go away? I don't know how any of this works and right now, they want to wait until the MRI is done before they give me the information. But, knowing a game plan is there helps ease my mind. Being in the dark makes me worry, having an idea of what to expect calms me. So anything would be better than trying to look it up. Online you tend to find worst case scenario, so I avoid searching google.

Thank you so much for letting me type this out. I've been keeping this to myself because I didn't want to worry anyone until I got the official diagnosis, but I still need to talk to someone about my thoughts and concerns.
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Re: Two Unofficial Diagnoses

Postby jimmylegs » Mon Feb 17, 2014 7:04 pm

hi gc, welcome to the forum :) I personally don't take meds, but I have spent a lot of time on nutrition. it's helped me a lot. I was able to identify several concurrent deficiencies and or low normal levels. I have some permanent damage but am much better off after paying attention to nutrition issues.

here's a relatively short happy ending story related to maternal nutrient depletion and ms-like symptoms (much milder than what you're experiencing, but demonstrates improvement when supplementing at higher levels, worsening when supplementing at lower levels). general-discussion-f1/topic19575.html#p189060

just so you're aware, mainstream medicine does not typically address the documented nutritional aspects of ms. given what you've said about your diet, you might do well to seek out a naturopath, nutritionist, or similar to help you with complementary care.

here's another recent discussion you might be able to relate to: undiagnosed-f54/topic24267.html#p221642

ttfn - again, welcome to the forum :)
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Re: Two Unofficial Diagnoses

Postby geekychick3000 » Mon Feb 17, 2014 9:45 pm

Thanks. Yeah, I am weird about my diet. It's mostly lean proteins and raw/steamed veggies. Since everything got a lot worse, I don't really eat at all. I drink loads of water, and I might eat a small "meal", but I've had issues with knowing when I have to urinate or go to the bathroom. I literally cannot feel anything I used to. No full bladder feeling, no gas or bowel movements. That's what lead to me going to the doctor. So now I have to keep up with when I ate something, when I drank something and try and time things. It's the worst feeling to be 26 and not be able to control simple things. I have a four year old who is beyond active, and this really has me worried. Since I can't grip things and I'm having issues with balance, I worry about taking care of her alone. I'm separated and getting divorced, so since this started, I'm moving in with family so I have some help on the bad days. I am beyond grateful to have them and their help, but I feel so ashamed.

Thank you for the information. I've heard about diet changes helping for my friend's best friend. She has MS and told my friend if I needed someone to walk me through it to call her. It was really sweet. I just hate bothering people with my problems. I really hope I can get this under control. I love to volunteer and I really love being able to play with my daughter, so I need to be able to do these things. My daughter is so active, so this has been a challenge.

Thank you again for the information, so I will look into it. :D
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Re: Two Unofficial Diagnoses

Postby jimmylegs » Mon Feb 17, 2014 10:32 pm

hey no problem - if you have any questions feel free to ask.
there was a short while when I couldn't feel things properly either - the good news is you might be able to turn a good chunk of the problem around. I was a strict vegan when I was diagnosed and had to make big changes but I'm glad I did.
good to hear you have someone in your close personal circle to help as well, and a supportive family situation.
one thing I would suggest is that you get some blood tests done if you can. I wouldn't recommend trying to do much with diet if you don't know exactly what you're working on.. this link www.thisisms.com/ftopict-2489.html has detailed info if you're interested. ttfn!
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Re: Two Unofficial Diagnoses

Postby geekychick3000 » Mon Feb 17, 2014 10:54 pm

Oh, I read what you linked. I've had all of my vitamin levels and such checked, hormone levels and everything has been checked. The only thing they have not checked out is MS, and it's what my PCP, the ER doctor all thought it was to start with. BUT, I know for many it's a pretty safe place to start. They've been really good about checking everything instead of order an MRI or spinal tap right off the bat. I really appreciate that.

Thank you for sharing that information though. :)
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Re: Two Unofficial Diagnoses

Postby jimmylegs » Tue Feb 18, 2014 1:00 am

smart to get the levels checked. did they give you your own copy of results? or did they just say 'it's normal'?
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Re: Two Unofficial Diagnoses

Postby geekychick3000 » Tue Feb 18, 2014 1:30 pm

They just said they were normal. They did EVERYTHING.

I got my MRI appointment, the soonest they could get me in is next Tuesday. They are still trying to get me in sooner. I'm worse today, so I am just trying to rest as much as I can. I've already taken a couple of naps, and I still feel horrible.
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Re: Two Unofficial Diagnoses

Postby jimmylegs » Tue Feb 18, 2014 1:53 pm

ok that's important to know - 'normal' is a dangerous term when it comes to nutrient tests.

if you can, it would definitely be in your best interests to get your own copy of results.
ms patients tend to have low to mid normal levels for nutrients of concern, while healthy controls have levels in the high normal range.

I can imagine mainstream docs ordering serum vit b12 and serum vit d3, plus the usual electrolytes perhaps, and likely serum ferritin too. but I'd be surprised to see that they tested serum zinc or serum magnesium (which are significant ones for ms cases, but tough to interpret - b/c everything is 'normal' whether sick or healthy - unless you know what you're looking for).

one other tidbit - I've known ppl to be told their serum ferritin (and other) levels were 'fine' when they were in fact quite low. that one ticks me off b/c there's not really any excuse for telling a patient their ferritin status is fine when it isn't. that one is not tough to interpret.

either low ferritin or low magnesium status could be contributing to the fatigue situation..

hope you get some answers and start to feel better soon :)
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