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I've just been diagnosed with multiple sclerosis

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5/6/2012 7:49:34 PM | IP
MidniteStar



Our Deepest Fear Our deepest

Anyone have this?

I'm just wondering what I can expect? I've been doing some research on it, but still know very little about it. The doctor isn't 100% sure that's what I have, but I had an MRI done and all the signs point to that. I go to a neurologist towards the end of this month so I'll find out more information then.

I guess I'm just kind of looking for some people who can relate?

Thanks
5/8/2012 4:48:53 PM | IP
rockyroadicecream



The neurologist is the best specialist to go to in order to rule out MS or not.

I'm guessing lesions on the brain in the mri is what triggered it? Do you have all the other symptoms, aside from the double vision?

I don't have it, but I learned a little about it awhile back. I know it slowly progresses and the symptoms gradually increase and become more severe.

Your best bet is to pick the neurologists's brain about it. They're the ones who can tell you everything you want to know about it. I knew of someone who was inaccurately diagnosed, but they didn't have all the symptoms. They just saw the lesions on the brain and assumed as much. The neurologist was the one who ruled it out.
5/9/2012 12:34:24 AM | IP
MidniteStar



Our Deepest Fear Our deepest

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5/9/2012 12:36:21 AM | IP
MidniteStar



Our Deepest Fear Our deepest

The user who posted this message has hidden it.

5/9/2012 12:37:39 AM | IP
MidniteStar



Our Deepest Fear Our deepest

Thanks for your reply!

I don't have all of the symptoms. See, I had the double vision for about a week. I went to my primary doctor who did a few tests and I had some blood work done which came back normal. They couldn't find anything wrong with me so I got referred to my opthalmologist who also could not find the cause. He referred me to a neuro-opthalmologist who ordered the MRI. Before the MRI they had to stick me five times to get the contrast dye into my veins. The nurse kept shooting through my veins and ended up getting the contrast dye into my arm instead which burned like crazy. She ended up having to call another nurse to give it a try. The second nurse stuck me and I remember her saying "oh butter...well, I think I got it before too much got into the arm. It hurt again like crazy. At least three times they got the dye into my arm instead of my veins and they kept apologizing.

Anyway, my arm has been extremely sore, bruised and swollen ever since. So much so that I can barely use it. It also has a tingling/burning sensation running through it every now and then. I did some research and I've read where many others have had these symptoms after getting stuck with the contrast dye. Whenever I went back to the neuro-opthalmologist for the MRI results I told him about my arm. He just brushed it off and told me..."you know, did you ever stop to think it is probably a symptom of the MS?" I just find it funny how I've never had this pain in my arm ever! And it's just in the one arm where they stuck me with the dye. Is it just a coincidence that it started hurting right after they stuck me? I tried to explain to him this, but he just walked right out the room as if he didn't hear me. But, oh well, he's the doctor so he'd know better than I.

So yeah, the only symptom I've had is the double vision which has cleared up and the arm pain/tingling which the doc claims is the MS and not the dye. The only inclination that it's MS is the lesions from the MRI. But yeah, hopefully I'll find out more from the neurologist I'll be going to soon.

Thanks again!
5/9/2012 1:01:12 AM | IP
rockyroadicecream



What the hell?

I had someone draw blood and she accidentally jerked the needle while changing vials. That spot on my arm was sensitive for quite awhile. She did something that didn't make the nerves very happy. It eventually went away, but we're talking like after a month or two. I don't remember specifics, only that it was a loong time for something like that to heal.

As far as the contrast dye goes, I'm not surprised. That stuff can be nasty if not handled right. Hell, there's even medicines they have you avoid taking 48 hours after because it binds to them and can damage your kidneys. So the fact that it burns and has caused the soreness that you stated isn't surprising at all.

The fact that the doctor shrugged it off as MS is ridiculous. Don't EVER shrug their crap off as "well they're the doctor, they know!" Not all are in it for the right reasons and not all listen very carefully. Some let that MD get to their head and they can be really crappy doctors. Speak up or get a second opinion. Ask questions until they're pissy. It's your right as a patient. Being passive and allowing them to do whatever can end up costing you thousands of wasted dollars. I've seen this happen before, too. Nip it in the bud.

Fortunately, the neurologist will be the best option for a second opinion. Many GPs have no idea what they're talking about when it comes to specialized areas like this. I've seen it happen before- misdiagnosis of MS solely because of the MRI. Nevermind the patient history or anything else that mattered.

By chance, are you diabetic or have hypertension?
5/10/2012 1:54:55 AM | IP
MidniteStar



Our Deepest Fear Our deepest

Ouch! That had to hurt!

Yeah, I have a feeling it's going to take awhile for my arm to get back to normal. It's been a week since the MRI and it still throbs. What makes it worse is I'm right handed and my right arm is the arm they injected. Even lifting my arms to wash my hair is very painful! ugh

I know what you mean. All I really wanted was for the doctor to listen and take me at least somewhat seriously. I may not be an MD or come close to their knowledge, but I do know my own body and my symptoms. What's normal and what's not. He didn't even want to hear any of that.

Anyway, you're right, the neurologist will be able to tell me more. Crossing my fingers that the diagnosis is wrong!

About your questions...as far as I know I don't have diabetes although it runs in my family (mother and all my aunts have it). I thought whey tested me for diabetes, but maybe not? I don't have hypertension either as far as I know, but that also runs in my family. My blood pressure has been a bit high on occasion, but recently has been back to normal.

Thanks for your input!
5/10/2012 2:32:36 AM | IP
ninjamu

30 years old female

Ascendant: Aquarius Sun: Leo Moon

I work in the medical profession and care for individuals with MS. They are wheelchair bound now. Over the years they have lost most of their ability to move their limbs and require long-term nursing care. For some it progressed slowly, taking until the elderly years, others were not so fortunate. Everyone is different.

I'm very sorry about your diagnosis. You need to start your work now to get your support in place. You WILL need it eventually.
5/10/2012 2:52:31 AM | IP
rockyroadicecream



Posted by MidniteStar
Ouch! That had to hurt!

Yeah, I have a feeling it's going to take awhile for my arm to get back to normal. It's been a week since the MRI and it still throbs. What makes it worse is I'm right handed and my right arm is the arm they injected. Even lifting my arms to wash my hair is very painful! ugh

I know what you mean. All I really wanted was for the doctor to listen and take me at least somewhat seriously. I may not be an MD or come close to their knowledge, but I do know my own body and my symptoms. What's normal and what's not. He didn't even want to hear any of that.

Anyway, you're right, the neurologist will be able to tell me more. Crossing my fingers that the diagnosis is wrong!

About your questions...as far as I know I don't have diabetes although it runs in my family (mother and all my aunts have it). I thought whey tested me for diabetes, but maybe not? I don't have hypertension either as far as I know, but that also runs in my family. My blood pressure has been a bit high on occasion, but recently has been back to normal.

Thanks for your input!


I just ask because sometimes those things can cause lesions on the brain that aren't related to MS.
5/10/2012 8:33:42 AM | IP
sheathedclaws



Click me (pretty please with madeleines

If you need to talk, message me. I know we don't know each other much but any support you need - you got as much as we can give

A friend of mine is with MS. It's always different but the earlier you take good care of yourself - the better.

-hugs-
5/11/2012 12:48:22 AM | IP
MidniteStar



Our Deepest Fear Our deepest

Posted by ninjamu
I work in the medical profession and care for individuals with MS. They are wheelchair bound now. Over the years they have lost most of their ability to move their limbs and require long-term nursing care. For some it progressed slowly, taking until the elderly years, others were not so fortunate. Everyone is different.

I'm very sorry about your diagnosis. You need to start your work now to get your support in place. You WILL need it eventually.


Wow, that must be tough for them. Especially for the younger ones I'd imagine. I'm hoping there is still a possibility I don't have it, but if I do I hope it progresses slowly. There is still so much I want to do before I end up in a wheelchair and my memory goes bad if that happens. I still want to go back to school for my Masters and I just got a new job. Only been there four weeks. I'd love to have children somewhere in the future. So I hope mine progresses very very slowly! But whatever happens happens. I didn't think much of it. Didn't think the disease was that bad, but my family is kind of freaking out about it which makes me think is there something I'm missing? Anyway, trying to read up on anything I can about it. I've read that many people had to quit there job or got fired because of it. That's the part that scares me.

Thank you!
5/11/2012 12:49:46 AM | IP
MidniteStar



Our Deepest Fear Our deepest

Posted by rockyroadicecream
Posted by MidniteStar
Ouch! That had to hurt!

Yeah, I have a feeling it's going to take awhile for my arm to get back to normal. It's been a week since the MRI and it still throbs. What makes it worse is I'm right handed and my right arm is the arm they injected. Even lifting my arms to wash my hair is very painful! ugh

I know what you mean. All I really wanted was for the doctor to listen and take me at least somewhat seriously. I may not be an MD or come close to their knowledge, but I do know my own body and my symptoms. What's normal and what's not. He didn't even want to hear any of that.

Anyway, you're right, the neurologist will be able to tell me more. Crossing my fingers that the diagnosis is wrong!

About your questions...as far as I know I don't have diabetes although it runs in my family (mother and all my aunts have it). I thought whey tested me for diabetes, but maybe not? I don't have hypertension either as far as I know, but that also runs in my family. My blood pressure has been a bit high on occasion, but recently has been back to normal.

Thanks for your input!


I just ask because sometimes those things can cause lesions on the brain that aren't related to MS.


Yeah, I've heard about that. I guess I'll know more soon. *keeping my fingers crossed*
5/11/2012 12:53:50 AM | IP
MidniteStar



Our Deepest Fear Our deepest

Posted by sheathedclaws
If you need to talk, message me. I know we don't know each other much but any support you need - you got as much as we can give

A friend of mine is with MS. It's always different but the earlier you take good care of yourself - the better.

-hugs-


Thank you! I really appreciate that.

I always thought you were a sweet girl.

Yeah, I'm trying to make sure I exercise more and eat healthier. Perhaps I can have a milder case of it.
5/11/2012 4:22:17 AM | IP
rockyroadicecream



Posted by MidniteStar

Wow, that must be tough for them. Especially for the younger ones I'd imagine. I'm hoping there is still a possibility I don't have it, but if I do I hope it progresses slowly. There is still so much I want to do before I end up in a wheelchair and my memory goes bad if that happens. I still want to go back to school for my Masters and I just got a new job. Only been there four weeks. I'd love to have children somewhere in the future. So I hope mine progresses very very slowly! But whatever happens happens. I didn't think much of it. Didn't think the disease was that bad, but my family is kind of freaking out about it which makes me think is there something I'm missing? Anyway, trying to read up on anything I can about it. I've read that many people had to quit there job or got fired because of it. That's the part that scares me.

Thank you!


The disease is basically your nervous system absolutely deteriorating. The myelin sheath is attacked by the immune system, which is pretty bad considering that sheath acts like the insulation that wires are wrapped in. The signal sent along the nerves has problems moving along when that sheath isn't there. It's a pretty serious disease to have, which is why the family is freaking out.
5/11/2012 6:05:21 AM | IP
R1g0rM0rT1s



words fail me

i know this is going to be hard for you but you have to deal with FACTS as they are revealed to you. don't check the internet (if you can help it) otherwise you'll be easily alarmed by information on this disease. i've been diagnosed with cancer before now and that would be my advice to you having done it all wrong myself....telling the kids after diagnosis rather than waiting for prognosis, etc.....when you hear you may have something bad like this, your best defence is to keep your mind strong and positive. if you are diagnosed with MS, you will encounter other people with the condition and i bet you will be pleasantly surprised by what a positive bunch people diagnosed with serious conditions can be.

thoughts and prayers in your direction

 

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