PLEASE HELP ME UNDERSTAND

[ozzy66]

HI GUYS;  I HAD POSTED PREVIOUSLY THAT MY SPINAL TAP SHOWED SEVERAL O BANDS IN THE SERUM AND THE SF.....UNFORTUNATELY THEY COULD NOT "COUNT" OR DETERMINE ORIGIN.  NEURO ORDERED MRI OF NECK AND SPINE.  NO LESIONS WERE PRESENT.  INDICATED THREE HERNIATED DISCS....

WENT TO PCP ON FRIDAY AS I AM "COVERED" IN MOTTLING ALL OVER MY BODY.  NOT DUE TO COLD AS IT IS THERE EVEN IN WARM SHOWER, ETC.  HE WAS VERY CONCERNED ABOUT THE MRI OF BRAIN, WHICH INDICATED A FEW NON SPECIFIC WHITE MATTER LESIONS IN FRONTAL LOBE AND THE O BANDS.  

HE SAID, HEALTHY PEOPLE DO NOT HAVE O BANDS PERIOD.  HE SUGGESTS THAT I GO TO A MS SPECIALIST TO TAKE THIS FURTHER.  HE ALSO DREW BLOOD FOR AN ANA (WHICH NO ONE ELSE DID)
CBC AS MY WBC ARE A LITTLE ELEVATED AND A LEAD TEST AS MY LEAD IS ELEVATED.

I HAVE BEEN DEALING WITH THESE SX FOR 7 MONTHS W/NO DX AND I AM GETTING WORSE AND TRULY FEEL ILL.......NOW I'M GETTING SCARED.  AS I FEEL WORSE AS TIME GOES ON I AM GETTING VERY NERVOUS ABOUT WHAT IS HAPPENING IN MY BODY AND I DON'T EVEN KNOW WHAT IT IS.....IS IT MS....IS IT LUPUS....IS IT SOMETHING ELSE.

MY HEAD FEELS AWFUL...IT HAS A VERY ANNOYING FUZZY FULL ACHE.  SOMETIMES I THINK I COULD HAVE A SEIZURE, MY BODY TRULY FEELS ILL (DOES THAT GO W/MS) I FEEL WEAK AND SHAKY DAILY LEG AND ARM PAIN W/WEAKNESS BLAH BLAH BLAH YOU'VE HEARD IT ALL BEFORE.

I'M JUST SO NERVOUS AND THIS WAITING FOR APPTS AND RESULTS IS PUSHING ME OVER THE EDGE....ANY ADVICE GUYS!

[cassrox]

Thanks Ozzy. I'm doing the same for you!

Cass

[ozzy66]

thank you very much for responding....the encouragement is so helpful.  I will pray that you get answers and also glad for you that you don't have to wait until your next appt.

I wish you all of the best!!!

Ozzy

[ozzy66]

Deb:  Thank you for responding....had the TSH and an ultrasound of neck due to pressure all normal...

The only rash I've had is the recent mottling....dr. said he didn't thinks this went with Lupus.  I've had pain x 7 mos but it feels like it's in my muscle more than my joints.  I do not have any notable inflammation of joints either.

had complete work up of heart, xray/cts of chest, ultrasound of organs all came back good???????

ozzy

[cassrox]

Hi Ozzy - boy do I know how you're feeling right now - scared and desperate for answers.

I've been going through the same thing for almost two years now - and I haven't even had the spinal tap done yet because my first neuro was a quack. And yes, I too get very sick, just the way Deb described. It's scary to know there's something really wrong and not know what that something is.

I agree totally with your GP's sugggestion that you see an MS specialist. I'm still not diagnosed, but I actually feel hopeful now that I'II will get those much needed answers now that I am finally seeing a good one.

With the test results you've had, seeking out someone who really knows the disease, as well as a strong knowledge of its mimics, would probably be a good move. And like Deb said, ruling Lupus in or out needs to be done.

Considering the stories related on this forum about the dismissive attitude some doctors have, one thing you can be glad of is that your GP realizes something is wrong and says steps need to be taken to find out what it is. It sounds like you're in good hands with him and that he really wants to help.

I have a second visit with my MS specialist coming up Tuesday. She's called me back in early, before my scheduled appontment, to discuss the results of my brain MRI and neck x-rays. The waiting game IS torturous, so I was very glad that she wants to see me now instead of waiting until my appointment at the end of January.

Try to keep your chin up...and if you need someone to "talk" to, please send me a message. I've definitely found comfort from finding new friends here on this forum that really understand what it's like

Take care,

Cass

[Deb61]

Yes, feeling ill does go with MS.  I used to feel sick all of the time.  I'm on medicines, including a DMD, and I think that this has helped me to not feel sick all of the time.  Now, I feel sick when I'm in a relapse, too hot, stressed (physically, emotionally), or have overdone things.  I also feel shaky and have an internal tremor which isn't obvious to anyone but me.  I do get obvious tremors, but not as bad as when I had my last relapse.  It sounds like you are in a revved-up period of whatever is going on with you.  

It also sounds to me like you may have MS.  At one time, a doctor thought that I had lupus.  People with MS or other autoimmune diseases will sometimes have a positive ANA.  I do have a low titer positive ANA test, but was determined that I didn't have lupusbecause the ANA test would never be high.  I also have hypothyroidism which is sometimes can be seen in people with MS.  This can make you feel weak and tired, too.  Did your doctor test your thyroid function (TSH)?  

Your doctor does indeed need to rule out lupus because CNS lupus will cause lesions on the brain and neurological symptoms.   Have you had skin rashes or sun sensitivity?  What about joint pain?  The skin mottling thing can be seen in lupus.  It also can be seen in vasculitis which can also cause brain lesions.  

Maybe you can call the doctor's office to find out the results of your blood tests prior to your doctor's appointment. Waiting around is for the birds!