Was just told i have MS on which i had MS all this time...

[BEEDEE]

I have been suffering with headaches, burning and numbness through my body and legs and arms weak. This has been going on since 2008. Seen so many different doctors,specialist, had lots of blood work done, mri's,ct scans,xrays been through alot.

And one year i had gone to the er 72 times not knowing what was going on. I even thought i was going to die from this pain. Just this year January 2013 my neurology sent me to a specialist in ms to look over my mri's and thats when i got a call to come in and see him for i was dx with ms.

I am scared but relieved that they finally believed me and ran these test and dx me with ms. It is very scarry out there that no one wants to take the time and have patients with us to go over our symptoms. If something feels strange in your body fight to the end for i have and it took me 5 years to get and answer and the right results. Now i just have to wait on appt. to see what the next step is and hope to get my life back at least some of it.. Sick of being sick.......

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Seasha]

Hi BEEDEE and welcome to MSWorld!

Yes, it's frightening and maddening to know that something is wrong and not having validation! I am sorry you had to wait so long, but the wait is over now~ I was in limbo for 10 years, so I know. I was relieved to find out, but still in shock. A mixed bag, you know?

I'm glad you found a specialist. Are you going to start treatments now?

Come back often and ask lots of questions. We have a wonderful community of people here, all willing to listen and share. Take care of yourself!

[CaroleL]

Hello and Welcome Beedee!

[Geekerbell]

Welcome!

I've only been on this limbo journey for a few months, but have already had my share of doctors either not knowing what is going on, ignoring my symptoms, and one just down right rude about everything. So I have a small inkling as to what you and so many others here have experienced with going through it for years.

I'm sorry you have MS, but I am glad that you have finally found out what is going on with your body and now have validation about your symptoms.

Laura

[Cat Mom]

Welcome Beedee, sorry for your reason for finding us. There's a whole bunch of support and compassionate understanding here... not to mention education and experience.
Jen

[ms382012]

At least it has a name now

I have been so confused since 2003, when my symptoms started to seem unrelated to my juvenile RA damage. It has taken that long for any doctor to suspect MS.

I complained of nerve and shoulder pain, my rheumatologist wanted to x-ray my hands.

I went to my gp again, and she sent me to another rheumatologist. This one said that I could not possibly have had RA that long, and by the time he saw me it was long past time for my Juvenile RA to hav eg one into remission.

He diagnosed me with fibromyalgia and put me on low dose antidepressants, which of course also helped with the nerve pain too. He also told me that I had tension headaches. Even the headache and neck muscle spasm that was "the worst headache of my life." I was too out of it to call 911. I was also having several episodes of leg spasms and true CNS induced vertigo that happened whether I moved my head or not.

I went off the meds to have my son. Right after he was born, I began to have all the old symptoms again, including a headache so bad I wanted to ram my head into the wall. At least two episodes of trigeminal neuralgia on my left side triggered by a soft breeze, which is maddening.

These symptoms have been continuing off and on, with constant fatigue and a new problem tolerating heat. My hand grip has gotten weaker, particularly my left side. I finally had an MRI showing mild stenosis and a positive si joint injection (thank you juvenile RA) so at least I could justify that I am not just lazy.

But in the last few months I identified precursor signs to my headaches that matched classic basilar migraine prodrome and auras. I FINALLY got a referral to a neurologist. He confirmed that I'm having migraines and I finally have meds to reduce the severity and stop the bad ones. I am still amazed at how fast they hit.

Then he floored me when he said it was not possible that my numb left side could be caused by pinched nerves, because I do not have pinched nerves matching the symptoms and it includes my face, and along with the migraines and trigeminal neuralgia, he suspected that a stroke was less likely but MS was fairly certain.

My MRI showed only two lesions and none are active right now. So at present I have clinically isolated syndrome. Finally, a name. I always suspected that all of my symptoms were somehow related. At least now I know. I have traditionally gone a year or so in between flares. I may start meds soon to keep it at bay longer. But while its scary to hear possible MS within 5-14 years, not knowing any reason that makes sense was much worse for me.

I don't feel stupid or clumsy when I veer into a wall or drop something in public. I don't feel lazy when I need to rest after going for a long walk or having a long day on my feet at work. I have a real illness. The people judging me don't have to know. As long as I know, they can judge all they want and I will hope they never have to go through something like this.

[suziq38]

You are so right, ms382.
No one really knows what you are feeling.

Hang in there.
I am still in Limbo.