I’m baaaaack! (update!)
AnonymousFebruary 7, 2008 at 6:53 am
Hi, everyone. I just wanted to post a quick update since the last time I was here, I had just been told I had MS.
Well, the bottom line is that I DO NOT have MS after all! The doctors were dead wrong and that diagnosis has been officially removed.
What happened is I got a sinus infection that somehow the doctors failed to diagnose (even though I was complaining of headaches and pressure in my head), and that stress pushed my body into a “relapse” of sorts. But it was a different set of symptoms from my original GBS experience. I did, however, experience a depression in my breathing and burning neuropathy in my upper body, which led them to believe it was a neurological condition. However, I was also having spikes in my heart rate and felt like I would faint every time I tried to stand up. It was horrible.
They gave me steroids and sent me home, but I continued to get worse. I could barely sit up for weeks, had non-stop migraines, had a pounding heart and chest pain, was short of breath, fainted or almost fainted every time I stood up, was so nauseated that I could not eat (so I lost a lot of weight), and my heart rate would go through the roof any time I tried to do anything. Just trying to get dressed would send it to around 170 bpm. It was horrible.
Luckily, my sinus infection finally got diagnosed, and by then it had advanced to a double ear infection with tons of fluid in both ears as well. It took two rounds of antibiotics to make it go away, but it finally did, and that helped get rid of the migraines. But I was still having horrible chest pain, shortness of breath, heart rate issues, fainting, etc. so FINALLY, after weeks of being unable to function and believing I had MS, I was referred to a cardiologist.
That’s when I discovered that my problem was not MS at all. Instead, what I have is a rare autonomic nervous system disorder called POTS, or Postural Orthostatic Tachycardia Syndrome. Basically my body has a hard time circulating my blood at the right pressure, so to make up for it my heart beats like crazy to help the blood make it to all my organs. So my blood pressure readings will almost always be normal, but my heart is overworked anyway. POTS also compromises circulation to the limbs and organs, which causes blood pooling in the arms and legs and can cause a TON of symptoms depending on which organs are most affected. People with POTS also tend to have low blood volume, which makes it even harder to circulate blood to all the tissues. So because of all these issues, it’s really hard for our bodies to adjust to positional changes, so we tend to do things like faint (or almost faint) when we try to stand up, especially if we’re stressed, sick, or dehydrated. And POTS can be caused or worsened by things like viruses or trauma (sound familiar?), and it can come on suddenly as well. And it can apparently be caused by GBS, according to my neuro and to several POTS-related web sites I have read.
Anyway, my cardiologist started me on a beta-blocker medication to see how it affected my symptoms, and within a day of starting the meds, I stopped fainting and could get up again for short periods of time. Within a week, I felt tremendously better, and now, a month and a half into it, I feel pretty darn close to myself again. It’s amazing what a proper diagnosis can do for you!
So now that I have the POTS diagnosis, my neurologist has decided that I did have Guillain-Barre last April, and it’s been well documented that GBS can both cause and exacerbate POTS (or other autonomic conditions) in some people because of the effect is has on your body’s equilibrium and on the nervous sytem itself. In my case, we think I probably had a minor case of POTS for many years but never knew it, and having GBS just massively aggravated it so that now it’s a full-blown condition. At least now I know what’s going on!
Oh, and here’s something crazy. I’ve had pins and needles in my hands and feet ever since the GBS hit, and it’s never gone away. Well, after I started the beta-blocker meds, it got a LOT better! And now it only happens occasionally. Clearly my hands and feet were always tingling before because they weren’t getting enough blood thanks to the POTS. I never even considered that.
So I’m back! No MS! It’s all about GBS and POTS. Woo hoo! 🙂
AnonymousFebruary 7, 2008 at 7:38 am
What a releif it must be to finally get some answers. Thanks for explaining POTS another medical conditions I’ve never heard of before. It it indeed great when we finally get some relief. Take care thank you for the example of how important it is to never give up.
AnonymousFebruary 7, 2008 at 2:19 pm
Congratulations on your perserverance and your up beat attitude! How fortunate that you do not have MS. I’ve never heard of POTS but then again, I’d never heard of GBS until I was diagnosed. I’ve been plagued with chronic sinusitis, I surely know what you went through. Best wishes and stay strong.
AnonymousFebruary 10, 2008 at 2:02 am
[FONT=”Comic Sans MS”][SIZE=”2″]Suzanne,
So glad you dodged the MS bullet!
I had never heard of POTS, now I’m gonna have to go research it, keep posting so we know how it goes, okay?
Come over to the[SIZE=”3″][B] Tavern[/B][/SIZE] and I’ll buy you a drink.
AnonymousFebruary 10, 2008 at 11:58 am
Well, this has certinaly been an education for me, and I bet a useful one for a whole lot of readers out there. When I was first put in the hospitasl the nuero I had thought I had MS. After tests he came to my room just beaming – I didn’t have MS – it was “only” GBS! I never heard of GBS, of course so I was happy because it was “only” GBS! Well, I think that attitude kept me more positive and helped me get through the toughest part. It sounds like your attitude has been uplifted, too. And that is the most powerful medicine we have.:)
GBS-MFv 1993 and 2004
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