Could you please share your journey of how you got a MS diagnoses with us?

Hello,

I am hoping that some of you would be willing to share your stories of MS.  I have had symptoms for 10+ years and am yet following up with a Rhuematologist and Nuerologist in January.  My Rhuematologist said it sounds like Lupus.

I am hoping you can share the following with us:

1) symptoms prior to and after diagnoses?

2) How long did it take until someone finally diagnosed you

Here are my symptoms:

1)  flare ups with no signs of problems at all

2)  numbness & weakness in limbs (hands, arms, feet, legs, even face, back & tongue).  It kind of feels heavy.

3)  recently a new symptom has developed which is burning sensation (feels like vicks vapor rub is on me) and this burning sensation might last 10 minutes in the chest, then in the back, then in left leg, then right and moves around.

4)  + ANA (antinuclear antibodies)

5)  +ACA (anticardiolipin antibodies)

6)  Pleury/costocondritis

7)  Extreme fatigue/exhaustion

8)  foggy feeling (feeling out of it)

9)  anxiety with these symptoms (but then again, who wouldn't get anxiety)

10)  trouble sleeping

11)  one child &  two miscarriages

Thank you so much in advance for taking the time to answer these questions.

God Bless,

Susan

Age 41

I am going to a nuerologist on the 8th of January. 

Susan,
Hi, I am Chris, and welcome. I don't quite understand flareups with no signs. I was diagnosed in 2007. Most people have had it awhile by the time they actually get diagnosed. One day, I woke up and my right eye felt like someone was trying to push it in. I blew it off as bunching up the pillow or something. Two days later, I could barely see. It was like trying to look through cloudy plastic sheeting. This went on for a few days and then I went to the eye doctor and she said the eye looks normal. I said I couldn't see. She requested an MRI at that point. That showed lesions. Then a spinal tap showed abnormalities. It was called clinically isolated syndrome. One incident. Took another year before I was diagnosed with MS. Switched doctors. You will begin to put two and two together she said, things that you blew off as getting older or just being sore or sleeeping wrong will beging to make sense. My arms and legs feel alot of pain, vision fades in and out, you may, like me have cognitive problems at times. It is like a ghost Susan, thoughts are there, then gone. I work on high power electronics. I can be walking 30 feet to get something, and stop half way and wonder what I was going to get...A mistake in my field means you can die very easily. Trying to solder some days, my hands shake pretty bad. Legs feel very heavy and muscles feel mlike I have been beaten. I keep going though and smiling. Somebody has to be me! Have a good day and God Bless, Chris

Hi there,
Thank you both for posting a reply to my question. I think one of the biggest thing is the uncertainty of not knowing what is wrong. Chris you seem to have a good attitude. It is YOUR body and it sounds like you are making the best out of it. That is awesome.

JSHER - I think the uncertainty of the unknown is the most difficult. I think once you get a diagnoses and move past acceptance, you will do just fine (as will I). I have a girlfriend who has had MS for over 14 years and she said it isn't a life sentence. She has a fabulous attitude and does great!!

In terms of the spinal tap, I have read different things regarding that. It doesn't completely rule out or say you have MS (from what I understand). I had that procedure done 10+ years ago and I will not do it again. Mine came out good.

If you do undergo the spinal tap (lumbar puncture) make sure they give you steroids to take at home and lay FLAT for 2-3 days at least. Drinks lots of caffeine to avoid getting a spinal headache.

God bless you both.

Susan

jsher said...
Hi Susan,

I am 39 am still waiting for my diagnosis. My spinal tap is on January 8th. Here is my history:

No issues EVER. I was a dancer so very much in tune with my body. about a year and 1/2 ago I starting feeling VERY fatigued with occasional heaviness in my legs. I was given a blood test and told nothing was wrong. the heaviness in my legs and extreme fatigue continued and I ignored it. They tested my thyroid and not much else.

The last week of this past July 2009 I started having mild tingling in my feet. I went back to my doctor who told me to take vitamins. Two weeks later I developed the bullseye mark of a lyme tick bite. I was immediately told to go on a six week course of antibiotics. Which I completed. The tingling never subsided or went away.
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I live in constant fear of what this diagnosis will do to my life. good luck to you and I hope only the best for you!

jsher,

I'm so sorry you're going through this; it must truly be devastating. I'm experiencing many of the same symptoms.

FYI....with chronic Lyme, six weeks of antibiotics is not enough. My SIL underwent 18 months of intensive antibiotic therapy before she was done.

I tested positive on the Lyme ELISA test; I'm waiting for my Western blot test to come back. My lumbar puncture is scheduled for Jan. 5th....same day as my spinal MRI. Both of my brain MRIs were clean.

Best wishes to you, susan1, and to all who are still in limbo to any degree....may we find answers in the New Year!