Scared

[hevnw8s]

Hi everyone! I am a newcomer to this forum but I have been reading a lot of what people have been writing for the last few days. I have not "officially" been disgnosed with MS, my last docotor told me he truly believes that is what I have. I have seen 8 different doctors and I will be seeing my third Neurologist soon. I don't understand why doctors are so afraid to commit to the word "Multiple Sclerosis". They throw it out there and then send you somewhere else.

I am scared to death if that is what I have. I don't much about the disease other than what I have recently read. What does it mean for my life? I am looking to all of you for some gentle guidance with this please.

I have been experiencing tingling around my eyes and lips, numbness in my right thumb and both big toes, I feel dizzy, I have ringing inmy ears and there is something else I am having a hard time explainning. My body feels like it has a constant buzzing underneath my skin. Does anyone have the same thing or know what it is? I have had MRI's of the brain and spine, they appear normal. I am goign for my first LP soon. Any advise? Anything would be appreciated.

[LisaJF]

Welcome to the forums!  As you can see, we are a tightly woven group of people from various walks of life.  Either people who are like you "undiagnosed" with possible MS to people who are actually diagnosed with MS.

Im not going to reiterate what everyone said here, they said it extremely well.  

Let us know how it goes with your LP ok?  Keep in touch!

Lisa

[Guitar_grrrl]

Welcome!

MS isn't a death knell.  The more we educate ourselves, the better we can learn to live with it, and around it.  I had symptoms for 20+ years before I had a firm diagnosis.  I'm progressing very slowly, but I still get out there and have some fun!  The new DMDs help slow things down.

BTW, I share many of your symptoms!

[anon07072023]

Hello, and welcome to the forum. I'm sorry that you're having to go through this and having to see so many doctors.  MS is sometimes really difficult to diagnosis (especially in your case, when your MRIs have all been clear).  

Like Lulu had mentioned, today's MS is much different than yesterday's MS.  There are many disease modifying drugs that people with MS take that reduces their future risk of disability. If MS is what you have, then it is what it is. I really don't think there should be an over-abundance of fear if that's what it is. I can understand the fear of just not knowing.  

Many people have different presentations of their initial symptoms. You had mentioned bi-lateral symptoms, although, often-times, people with MS will present with only uni-lateral symptoms. That being said, that doesn't mean that you can't have MS. But that, along with clear MRIs, may make it more likely that you don't have it.

Good luck with your new neuro.

Take care,
Kelly

[Lulu54]

Welcome! I'm glad you found us here and I hope we can put your mind at ease.  First believe me when I tell you the future image of MS is no longer as bleak as it was 20 years ago.  We know that most people who are on therapy for their MS do very well and manage to live a fairly normal, healthy life.  

That means not being in a wheelchair, that even means most won't need a walker or even a cane to get around according to the most recent studies released.  AND there are many new drugs coming soon - in the next year or two - that will make even bigger changes in our health care.

MS used to mean a shorter life span, but that is not longer true either.This isn't to say that living with MS doesn't present unique challenges but in most cases they can be handled.  

I am going to assume that you are being seen by a neurologist and hopefully one who is an MS specialist.  Testing for MS can really drag on if you don't have obvious symptoms and test results and I hope that doesn't happen with you.
I hope you will hang out here and ask your questions and let the people in this community guide you to excellent resources that can help deMyStify this disease.

We have great health pages all written by people here in easy to understand terms - you can access them through the links on the right side of this page.  

Welcome again,
lulu