My story so far

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

My story so far

Postby AussieRose » Tue Aug 06, 2013 11:14 pm

Thank you for taking the time to read my post. I am undiagnosed, and have been told by one neurologist that I absolutely can't have MS because I have no lesions (well, I have one but it's on the wrong part of my brain for MS apparently). I've also been told by another that I may have it but it's a wait and see thing.
I got my first symptoms about three months ago. Really strong pins and needles for hours on end but it seemed to be limited to one side. I'd had the flu the month before and a chest infection so I assumed it was the antibiotics I'd taken. I also had a massive migraine which was odd for me because I am not a migraine person. About a month later, I got it everywhere, as well as burning and numbness. Numbness doesn't seem the right word because I could feel the limb but it was like there was a layer of rubber on my skin. The second bout was much worse and I was in hospital for a couple of nights because the sensations were affecting my walking and I needed some relief to sleep.
An MRI came back "clean" for MS which I was extremely happy with. The problem is, the symptoms are still there and I have new ones. I have a weird sensation in the middle of my back which I'd had for some time but wrote-off as a temporary annoying thing but it's there many times a day. It's a strange buzzy, kinda tickly feeling that starts in the centre and then spreads outwards. It happens most times when I step into a hot shower. And the pins and needles and burning is there in some capacity every day.
I don't know what I want really. Obviously I want no symptoms and to not be diagnosed with anything. But I want answers and I want to know I'm not going crazy.
I did have Bell's Palsy about ten years ago (in my 20s) and I wonder if I just get weird neuro symptoms when I'm ill or stressed?
Thank you again.
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Re: My story so far

Postby want2bike » Wed Aug 07, 2013 6:10 am

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http://www.youtube.com/watch?v=zGmyUppmt-g
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Re: My story so far

Postby lyndacarol » Wed Aug 07, 2013 5:29 pm

AussieRose wrote:An MRI came back "clean" for MS which I was extremely happy with. The problem is, the symptoms are still there and I have new ones. I have a weird sensation in the middle of my back which I'd had for some time but wrote-off as a temporary annoying thing but it's there many times a day. It's a strange buzzy, kinda tickly feeling that starts in the centre and then spreads outwards. It happens most times when I step into a hot shower. And the pins and needles and burning is there in some capacity every day.
I don't know what I want really. Obviously I want no symptoms and to not be diagnosed with anything. But I want answers and I want to know I'm not going crazy.


Welcome to ThisIsMS, AussieRose. Very often, it is not easy or quick to diagnose MS. Before expensive tests even existed to diagnose MS, doctors used to diagnose it on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. I had "normal" test results initially (lesions were seen on my FOURTH MRI and the diagnosis was made then). Many people with the diagnosis of MS have NO lesions on their MRIs; there are people, who had no MS symptoms during their lifetimes, who are found to have many lesions on autopsy – it is my opinion that lesions have no effect on this disease, they are simply scars from any number of causes.

You are "not going crazy." We welcome your questions and your contributions to this website. IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas, and we are willing to share all of these, if asked.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: My story so far

Postby AussieRose » Mon Oct 28, 2013 2:37 am

Hi everyone. I thought I should come and update you. I still have no answers, but then I've had no further testing either. I've been living with mild symptoms but nothing like the initial onset so as much as the unknown element has been driving me mad, I've been able to just live my life.

I've had one really bad week (when it all started)and another quite bad week, but not as bad as the first. My symptoms now are mostly burning, numbness and the zapping/firework thing in my spine. I also get tremors when I'm tired or run down or just for no reason at all sometimes.

Rather than focusing on diagnosis, I've been doing some natural things to help. I am gluten and dairy free (my blood inflammation was above normal so trying to bring that down). I really don't know what is going on. I've only had that one MRI that was clean so the neuro is quite content to play the wait and see game. He's done some blood tests which were quite normal. I have a positive ANA (low positive) and a low positive Rheumotoid factor, but these tests were taken when my symptoms were behaving. I really want them done when I'm a shaky mess.

So, long story short, no news. My GP is starting to say things about MS being back in the picture but without an MRI with lesions, I doubt I'll be diagnosed. And I don't want MS. It's this weird mixed feeling I have. The longer I go without someone telling me I have MS, the better. But the longer I go with all these unexplained symptoms, I begin to get more and more anxious and concerned about it all being in my head.

Just out of curiosity, anyone here had Bell's Palsy prior to diagnosis?
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Re: My story so far

Postby AussieRose » Mon Oct 28, 2013 3:07 am

I should add that I am seeing a naturopath who has put me on numerous supplements despite my results being 'normal'. I am hoping they will make a difference.
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