Is this really how this works? so upset...

[AmandaPandalyn]

So, I'm not diagnosed - but my neuro said he's suspecting ms. Over the last 3 years my feet and legs have became more and more numb (among other symptoms). I finally sought help after I began falling alot this March. But nothing showed up on tests. I've done two MRIs they found migraine scars and an old stroke, Im only 36 - but no ms lesions. I also passed an emg. They want to send me to a pediatrist and a sleep disorder clinic to rule that out (which I'm still waiting on). Mean while I just wait, having a harder and harder time walking.  I'm so frustrated. Also my neuro told me today... you don't need to come back unless things get worse. Really...??? Iike wheelchair bad? This is how diagnosis happens? So frustrating :-( any encouragement would be great! Thanks

[AmandaPandalyn]

Thank you all, I appreciate all your imput! I have looked - and the nearest ms specialist is about two hours away... but you gotta do what ya gotta do! It was a lumbar MRI. The tech said she read my chart and knew to be looking for lesions. Wow. Not only am I confused but apparently my drs too. You're right Alex... I need to be my own advocate right now!!! I just feel like crying right now. :-( I trusted these people.

[HVAC]

We have to be our own advocates.That means getting to the right specialist. One neurologist can look at a MRI and say the lesions are headaches another can look at your, history, symptoms, and his experience and see something else. It often takes years to diagnose.

Also understand that when you are finally diagnosed things may not change much. Sometimes there are no silver bullets. What is important to get symptom relief. You can ask for that with out a diagnosis. It will not mess up the diagnosis. There are muscle relaxers and drugs for nerve pain. There are also IV steroids for inflammation.

I had had MS for over 40 years when I was diagnosed. I knew there was something neurologically wrong and I went to all these neurologists growing up. My parents did not tell me. So I thought I was normal. I had MS at age 2. I have always had double vision. Finally my GP sent me to a neurologist after she did a neurological exam.

It took another two years and 6 neurologists to be diagnosed. Most said I would be diagnosed with MS but no one would diagnose me. All my tests screamed MS.

I thought I will be diagnosed and a team will fix me. I was diagnosed in 2009. I have seen my neurologist 4 times. He sent me to a pain clinic so I see them once a month. If I have symptoms like fatigue I see my GP. I saw the neurology NP because I was having trouble walking so he sent me to PT. Which helped.

A lot of my MS I have to live with. The MS drugs do help to slow progression. There is nothing yet to go backwards with MS.

For me attitude and exercise keeps me happy. My body is falling a part but I am happy. I swim an hour every day. even though I can barely walk later.

Alex

[jensequitur]

The lower back, as in the lumbar spine? Sounds like you need a new neuro. The lumbar has no spinal cord. It's a bundle of nerves called the caude equina, and it won't have lesions.

This doesn't mean that you have MS, but to me it sounds like you're having trouble with the thoracic spine. I have lesions at T6, T7, and T12, and they cause quite a bit of trouble walking. I've fallen because I couldn't feel my right leg. I have weak legs that get fatigued easily, and too much activity will cause them to cramp and feel buzzy. If I'm really tired they feel heavy and I get vibrating sensations.

[AmandaPandalyn]

Thank you for your response, and your advice! I've relieved to hear I'm not alone on this, but kind of sad for all of us... I just felt completely dismissed today :-(. My first MRI was my brain, the second was just my lower back. I wondered why it wasn't the whole thing - but  I didnt ask, I just trusted they knew what they were doing. I think I'll have to look into finding a  new neuro. Then educating myself so I know better. Thank you!

[kwarendorf]

Hi AP - Welcome to the group.

Sadly it is how it works, a lot of the time. You can try and speed up the process though. The first thing I'd do is look for a new neuro. This one doesn't sound like he's all that interested. Anyone how says no need to come back unless things worsen is not interested in helping you and needs to be replaced. If he suspects MS, find a neuro who specializes in MS. Not one who lists MS among multiple "specialties". My doc treats MS and nothing but MS.

The most important part of an MS diagnosis is the clinical exam. Neuros skilled in MS diagnosing will see things others won't. It sounds like your MRIs have been of your brain. Has anyone proposed MRIs of your cervical and thoracic spine? MS lesions can show up anywhere in your central nervous system which includes your spinal column. There are things that can be done :-)
This can be a loong process, even under optimal circumstances. It often requires the patience of Job. Ask us lots of questions, we've been where you are :-)

Kyle