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Can I have MS with no lesions?

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Posted 2/25/2010 3:55 AM (GMT 0)
I spent 9 days in the hospital unable to walk without a walker or some type of assistance. I was given a steroid to try and help since they couldn't figure out what was going on. I was able to walk on my own after that steroid. It is now 4 months later and I still have the following symptoms:

Blurred Vision
Dizziness/Lightheadedness
Leg weakness (right leg)
Numbness/Tingling in hands and feet
Headaches
Low backache (probably from spinal tap 3 months ago)
Loss of balance
Fatigue
Trembling/shaking in right leg when it's fatigued
Joint/Muscle pain - especially if I have been sitting for a certain period of time

I think those are the main ones. I have had multiple MRIs of my brain including a 3T MRI but everything was normal. So they say that MS has been ruled out. I was given a diagnosis of Postural Orthostatic Tachycardia Syndrome but now the dr says that is not what I have. He believes that I have an autoimmune disorder but he is not sure which one so he's going to call me back with appointments for more tests. After going through a lot of the autoimmune disorders the one that fits my symptoms is MS. Is it possible to have MS when their are no lesions present? Is there another type of autoimmune disorder that it could be? All other blood work, spinal tap, EMGs, etc are normal. <!-- / message -->
Posted 2/26/2010 8:42 AM (GMT 0)
Hi leydengs, and welcome to the forum!

I'm so very sorry you're going through this.....but I hope that you'll feel some sort of comfort knowing that you're definitely not alone. Many on this forum are also in diagnostic limbo.

Unfortunately this is the way of autoimmune diseases. There are so many AI diseases out there that can cause similar symptoms, and getting a firm diagnosis can be a journey lasting through many years (and many different doctors!).

Of course MS is the prime suspect for causing symptoms like yours, but please don't neglect any of the other possibilities.

I myself have every one of your symptoms. And all of my MRIs have been clean.

As it turns out, celiac disease, lupus, Behcet's disease, Hashimoto's thyroiditis, Graves disease, and Sjogren's Syndrome can cause some or all of those symptoms. And that's only a partial list of AI diseases that could be to blame. And things become even more complicated if fibromyalgia and/or more than one AI disease is involved.

You can see in my signature line all of the things I've been diagnosed with over the past two years. Plus I've just been diagnosed with Lyme disease! And guess what? Lyme disease can cause every single one of those symptoms as well!! Lyme can even cause brain lesions!

And I would NEVER have expected to be diagnosed with Lyme....I'm not the outdoorsy type.

Well this post is too long now....I apologize. But I wanted to get all of this stuff out there for you to think about. The world of AI disease is far more complicated than meets the eye. Symptoms of various AI diseases tend to overlap, but different people may have the exact same diagnosis and display very different symptoms. And then there are other things like fibromyalgia, Lyme disease, even viruses such as Epstein-Barr (EBV) and cytomegalovirus (CMV), which can produce terrible, debilitating symptoms such as the ones in your list.

I hope that you get your answers very soon.....that you DON'T have to wait for years to find out what's wrong with you!
Good luck!
JoAnn
Posted 2/26/2010 9:21 AM (GMT 0)
P.S. As I re-read what I posted, it seemed a bit bleak, and lacking in helpful advice. So I'll try again.... :)

YES, it certainly may be possible to have MS and not have lesions, at least, not have lesions that may be found by current MRI technology.

However, no matter what is actually wrong with you, be it MS, or Lyme disease, or lupus, or whatever....the person who will ultimately help you the most is you. I know you are ill, and fatigued, but please try to educate yourself, to research every possibility, and to be your own advocate! Whatever you do, never settle for doctors who won't listen to you and who brush you off.

Asking questions on forums like this one is a good thing, not just for the support you can find, but for the information! For example, I hung around the celiac.com forums for over a year, just absorbing information, because celiac disease is so incredibly complex! People think of it as a "stomach" problem but it can attack your brain (it can cause brain lesions), your bones, your skin as well as your intestines....and celiac can actually open the door for other autoimmune diseases to develop.

It's amazing what you can learn on a forum like this one!

Again, I wish you the best of luck! Please keep us posted on what you find out!
JoAnn
Posted 2/26/2010 2:10 PM (GMT 0)
All other disorders such as lyme disease, lupus, etc have all been ruled out. I have been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) which I have had since I was a teenager but the dr still beleives that I have some other type of autoimmune disorder going on due to the weakness in my legs, etc.

Thanks for your help. I think I belong to every MS forum website that there is. I was told MS was ruled out because my brain MRIs and back MRIs were normal but at my last appointment with a cardiologist to get a second opinion on POTS he asked about MS as well but I told him that I was told it was ruled out so my concern is just that it keeps getting brought.
Posted 5/8/2010 5:42 PM (GMT 0)
I know I am posting this a little late but hopefully you'll still get it.

Have you talked with a Rheumatologist about Behcet's? I am currently in the same boat you're in and was recently diagnosed with the possibility of having Crohn's and before that had an MRI to rule out MS.

I am pretty convinced that I myself have Behcet's becuase ALL yes ALL of the symptoms fit.

During the barium swallow x-ray, the doctor couldn't tell for certain if it was Crohn's or colitis but suggested that an inflammatory process is to blame.

Currently I am in diagnositic limbo. I am awaiting a CT enterography to help diagnose the Crohn's. If they cannot officially make the diagnoses for whatever reason my GI doc will probably refer me to a Rheumatologist or Neurologist.


GOOD LUCK!

Posted 5/10/2010 2:34 PM (GMT 0)

Hi there and good morning, I had three MRIs before lesions showed up.....and then of course as a result I was able to get my  dx for MS

Gary

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