Oh I know, I was just explaining how the numbness was different be seams to have started from that 1st time.

I think I have seen that link but I'm going to go look at it now.

OK so you are saying since I didn't have other "sensory symptoms" at the same time with the numbness than it probably isn't MS numbness?

Using that link I've experienced all of this:

Optic Neuritis Blurred vision, eye pain,
Diplopia Double Vision
Nystagmus Jerky Eye Movements


Paraesthesia Partial numbness, tingling, buzzing and vibration sensations
Anaesthesia Complete numbness/loss of sensation


Vertigo Nausea/vomitting/sensitivity to travel sickness from vestibular ataxia

Frequent Micturation, Bladder Spasticity Urinary urgency and incontinence

Depression
Cognitive dysfunction Short-term and long-term memory problems, forgetfulness, slow word recall
Mood swings, emotional lability, euphoria
Anxiety

Fatigue

Sleeping Disorders

Inappropriately cold body parts



Gee, wonder why I've thought I had MS LOL!!!
Sorry, didn't mean to hijack your thread

Well . . . no.

You may very well have MS, and no doubt they were suspecting that from beginning based on the bizarre set of symptoms you had . . . but:

1. Under further/more intense investigation, the combination they WANTED to see just did not present itself, AND
2. The objective testing did not indicate MS

I'm trying to think of a comparison, but it's hard because MS isn't clear-cut, like most illnesses.

My daughter's 11 yr old best friend has been sick to her stomach for about 5 yrs. She couldn't hold down food, she had anxiety attacks, she had bowel issues, etc. The doctors and specialists had done every imaginable test of her digestive system, etc., and they finally came to the conclusion it must be emotionally based.

Last summer she was dx with terminal brain cancer. She now has 3 inoperable tumors.

Obviously the way the condition presented itself was not "typical" for brain tumors. It just didn't "look" that way . . . but clearly it was.

You are presenting with a number of totally unrelated symptoms, and MS is one of few conditions that has a number of seemingly totally unrelated symptoms. That's why it makes sense that it might be MS.

On the other hand, they want to see a combination that makes sense for MS, like the numbness is combined with burning, electric shocks or flushing. Sensory symptoms are often associated to spinal lesions, and spinal lesions are often associated to bowel and bladder problems. Who'd have thunk? . . . but THEY know this.

I do get cognitive problems with spinal lesion attacks. I also get mobility problems, spasticity, etc. at the same time, usually. The combination they WANT to see though is I.E. numbness + electric shocks + certain bowel issues . . . then they KNOW it is my spinal lesions acting up. And, depending on how far up the spinal lesion is, they EXPECT to see numbness in specific parts of the body (not one hand, without the torso, or the face, without the chest).

So, between your symptoms and the testing, it's just not adding up for them right now. HOWEVER, many of us start out with adhoc symptoms . . . that we also have a very hard time describing . . . so certainly MS can not be ruled out yet.

Cherie

Thank you. I do have a lot of bowel issues (IBS symptoms, no warning when need to go, feeling like I need to go but can't when not constipated, I could go on) and I think I am unable to empty my badder all the way a lot of the time. My neuro said I needed to talk to my PCP about all this, it had nothing to do with my numbness.

I'm also still wondering if the hemangioma they found on my spine could have been a lesion and not really a hemangioma because I read that sometimes a hemangioma is mistaken for a lesion.

Those particular bowel symptoms might be related to MS, because IBS can be a symptom of this disease.

However, the IBS-type symptoms that you've described are not necessarily what they are looking for when we present with numbness. Additionally, they probably would not expect to see (those telltale spinal-lesion-specific) bowel issues when a person presents with only numb legs (not torso) anyway.

There are clinical tests they can do that might help firm up what we are experiencing, but they are then looking for a combination of factors to see if symptom complaints + clinical results = probable dx.

Like I said previously, they are looking for a "set" of symptoms that make sense (at least to them). Sometimes our symptoms just don't make a whole lot of sense either though . . . and that is when they would need confirmation from our test results. In your case, the tests aren't talking yet either.

Cherie