RECENT MS DIAGNOSIS

[AMERS389]

HI ALL, JUST DIAGNOSED WITH MS RIGHT BEFORE CHRISTMAS. BUT HAVE NOT SEEN THE SPECIALIST IN MYAREA WHO WORKS WITH JUST MS PATIENTS. MY APPT IS ON JAN 24TH. I HAD ABNORMAL BRAIN MRI AND LP THAT SHOWED OLIGOCLONAL BANDS I THINK THEY WERE CALLED. STARTED WITH NUMBNESS/PINS/NEEDLES IN CHIN AND LIPS DAY AFTER THANKSGIVING AND STILL HAS NOT GONE AWAY. HAD ONE COURSE OF PREDNISONE. FROM WHAT I READ I WILL NEED TO GO ON ONE OF THE NEW DRUGS TO PREVENT RELAPSES. SINCE I STILL HAVE THE NUMBNESS, IS IT A BAD THING TO WAIT TILL THE 24TH. COULD MORE DAMAGE BE GOING ON? JUST A BIT WORRIED. I AM 49 SO NOT AS YOUNG AS SOME OF YOU. I DO NOT KNOW WHAT TYPE I HAVE EITHER. WILL THOSE DRUGS HELP THE NUMBNESS GO AWAY, IT IS BUGGING ME AND THE COLD AND MYFATIGUE MAKE IT ACHE REAL BAD SOMETIMES..ANY FEEDBACK WOULD BE GREAT. THANKS AMERS

[young at heart]

WELCOME TO OUR CYBER FAMILY.

PLEASE REPOST SO EVERYONE CAN WELCOME YOU AND WE HAVE A VERY AWESOME DR(RETIRED PEDIATRICIAN) WITH MS THAT HAS MORE WITTS THAN THE MAJORITY OF THE NEURO'S. HER NAME IS QUIX AND SHE'LL UNDERSTAND WHAT YOU ARE TALKING ABOUT.

WHEN WAS YOUR HUBBY DX'D

WHAT TEST DID HE HAVE

T-LYNN

[ljon]

Anybody ever had a been told they had post infectious encephalomyelitis?  My husband had symtoms of MS and this was 1st diagnosis.
  

[AMERS389]

Julie,
That is just to amazing that a doctor would suggest that...I still can't believe it and would report him definitely. Julie my MS started with my lips and chin tingling and going numb..just like you describe post dental anesthesia. I still have some numbness, it can now after 7 weeks feel numb all on my right side , under my eye too so it does sound neurologic to me. My face or scalp gets a burning feeling off and on too..so see you are not alone.Good luck with your appt with hopefully a good neurologist.
Kitten...Thanks for the post, I am anxious to start the med because I do not want things to get worse where I would not be able to work or care for my kids and husband. I will deal with side effects as they come just praying for strength to meet just one day at a time. I wish you the best in your life...God Bless you ALL.fellow comrades....United we stand, seperate we fall...Amy

[elsiek]

I have been doing this for 20 yrs and thought I had heard everything.  The medium is the craziest thing I have heard.  I guess your head is really full with all these symptoms and other people.

RUN, don't walk to another dr.

Elsie

[RIDDICK_777]

HAHAHAHAHAHAHAHAHAHA MEDIUM POWERS AND HERBAL TEA LOL! DID HE SAY YOU SHOULD BE READING THE TEA LEAVES LOL!

JEEEESH THAT IS ONE FOR THE BOOKS.

[kitten o]

heather first of all great going with the enlarging letters,
i do not need caps anymore.
america very sorry for your dx before xmas.
i was dx in may 2007, i take no shots. i tryed for 3 months.
but this was my desicion, i am doing well. sometimes i
get eye pain i have ON also.
look into different meds. you will find the rite one for you.
kitt

[Heartshome]

HAHAHHAHAHAHAHA! Medium powers. That's a new one. Are you changing doctors?

[AMERS389]

Thanks Heather, I really don't need to do all caps, just not paying attention..sorry about that.LOL Thanks for advice on drugs. I have been reading alot about all of them and you are right it is my choice but I like to hear how others have done too. I guess you can always change if it's side effects don't diminish. I am a RN so giving my self the injections should be fine...although I will  probably teach hubby too so he can be involved and can give the ones to back of arm...Anyways until I meet with neuro on 24th I am just praying and knowing God has everything under control..I just put my trust in him and no matter what it will be okay. I wish you the very best on your new treatment with copaxone...I hear the country singer Clay Walker has done it for 10 years and has stayed pretty much in remission...cool..Thanks again for your help and welcome...Take care Amy

[young at heart]

GLAD YOUR GETTING ANOTHER OPINION FROM AS MS SPECIALIST.

A VEP DOES NOT EXCLUDE MS.IT USUALLY DETECTS OPTICAL NEURITIS OR PAST OPTICAL NEURITIS.

WITH THE WML'S YOU'D THINK THAT YOUR NEURO WOULD OF DONE AN LP,DID THEY DO MRI'S OF THE C-SPINE AND THORACIC?

HOPEFULLY YOU'LL GET ANSWERS SOON

T

[SOONERMOM]

Thanks for  your  comments.  I had wondered about stress making symptoms worse.  I had VEP that came back negative in Nov.  Numerous blood test to rule out other diseases came back negative.   I am going to a MS specialist on the 15th for a second opinion.  

I guess it goes against my nature to sit around and wait while I get worse--but since I am undiagnosed I really  have no choice.  It is really like riding out the storm like you said!

Stacey

[young at heart]

DARN I'M GLAD I'M NOT THE ONLY ONE THATS SEES THAT DARN LITTLE MOUSE,MY KIDS WERE MAKING ME FEEL KIKE I WAS LOSING MY MIND.

HEATHER BLESS YOUR HEART WITH THE TIP ON ENLARGING PRINT ON A COMPUTER,BEEN OFF FOR A FEW DAYS THESE DANG EYES ARE GIVING ME FITS AGAIN.

AMERS,

WELCOME TO OUR CYBER FAMILY,OUR FAMILY IS GETTING LARGER EVERYDAY,A WONDERFUL BUNCH WE ARE.

NOT A VERY GOOD CHRISTMAS ,BUT KEEP IN MIND MS IS LIVEABLE,SOME DAYS WITH LIMATIONS.I WAS ORIGINALLT DIAGNOSED IN 1998 AND DISREGARDED THE DX AFTER A FAILED BACK SURGERY.I WAS REDIAGNOSED  1 YEAR AGO TOMORROW ON MY 41ST BIRTHDAY.
AS FAR AS SYMPTOMS I HAVE SOME RESIDUAL PERMAMANT ONES FROM A COMBINATION OF THE MS AND A LUMBAR NERVE DISEASE.I WISH I WOULD HAVE FOLLOWED UP WITH DX IN 1998,BUT NO GOING BACK.I HAVE BEEN ON REBIF FOR 10 MONTHS AND HAVE BEEN DOING QUITE WELL WITH IT.I HAVE SPMS.

YOU'LL HAVE LOTS OF SUPPORT HERE.ASK MANY QUESTIONS,THATS HOW MANY OF US HERE HAS LEARNED.

SOONERMOM,

WELCOME ALSO,WITH THE MULTIPLE WML'S HAVE YOU GOTTEN ANY OTHER OPINIONS AND HAVE THEY RAN ANY OTHER TEST AS IN EVOKED POTENTIALS.

FOR FLAIR-UPS HEATHER AS USUAL  HAS DONE AN EXCELLENT JOB ANSWERING.MUCH DEPENDS ON THE INDIVIDUAL,I HAVE BEEN IN AN ATTACL SINCE THE END OF SEPTEMBER AND MY NEURO HAS TREATED IT TWICE NOW WITH SOLU-MEDROL INFUSIONS,NOW ITS JUST WAITING IT OUT.MY NEURO EVEN DONE A REPEAT LP TO TEST THE MYELIN BASIC PROTEIN,WHICH WAS EXTREMELY HIGH AND REPEATED MRI'S TO MAKE SURE THAT NO FURTHER DAMAGE WAS OCCURRING,ONLY NEW THING WAS A LESION AT THE T 10 ALL ELSE IS STABLE,SOMETIMES ITS JUST RIDING OUT THE SO CALLED STORM.WITH MANY SYMPTOMS OR ATTACKS ANY LITTLE STRESS CAN CAUSE THE SYMPTOMS TO BECOME WORSE.
HOPEFULLY YOU WILL GET SOME ANSWERS SOON AND A REPREIVE FROM YOUR SYMPTOMS.

ONCE AGAIN WELCOME.

T-LYNN

[Heather3418]

I wish I could answer your question about the "little animal," that you will hear so many people with MS, say that they also see.  I have heard it repeated so many times, I think they ought to put it in the official list of "symptoms," category.

Yeah, it is a "strange" phenomenon , but I swear...so many people know exactly what I am talking about when I say, "I saw that mouse again."  

Maybe we should take a poll and ask how many of our members also have seen the same small animal out of the corner of their eye, that I have seen and continually see.  I have had this happen to me at least once or twice a week for over a decade now.  At first I was scared to tell anyone what I thought I saw; feeling sure they would call the men with the white straight-jacket...then when I heard so many others with MS tell me they had seen this 'same small animal scooting across the room,' I figured I wasn't nuts.  Well, at least I will not admit to anyone that I may be nuts...but yeah, I still see that thing...regularly.

I have a Neuro appointment next week.  Maybe I should ask her.  In fact, I think I will add that now to my diary of current symptoms that I have prepared for her...

Heather

[biowham]

I am weirding out about "the little mouse" comment. For the last two nights, while I was lying in bed, I thought several times over that I saw out of the corner of my eye a small animal run across the carpet. I believed so strongly that I had seen something that I kept looking again and again to see if it would come back.

Can you tell me more about that? If I have MS, I'm right in the middle of a flare right now.

What a strange thing this is.

E

[Heather3418]

If you need for me to type in all CAPS, so you can read it better, please let me know.  We have many on the forum that have trouble with their eyes, so some have to type in all CAPS just to be able to read.

I learned a hint from my boyfriend how to make a page appear larger, when the print is too small.  If you hold down the Control Key and at the same time, go over to the "+" sign on the calculator side, it will make the text as big as you like, just by holding down the control key and keep hitting the plus sympbol to your desired size.  You set it back to regular type by reversing the process, but this time using the control key and then the minus key at the same time.  This may not be an issue for you, but thought I would throw out the hint, just in case you need asssitance.  This works on ANY internet page you are reading.

Anyway...the use of the MS modulating drugs is a personal choice between you and your doctor.  I have chosen Copaxone, even though that will mean a daily shot.  I use to take Avonex, which is injected once a week into the leg or thigh muscle.  The Copaxone is just under the skin.  There is Betaseron, Rebif and Tysabri.  Tysabri has some nasty side-effects and you may want to weigh those carefully before deciding to use it.

I had some side-effects with Avonex.  That is an Interferon drug.  It just didn't like me although I took it for 3 years.  I had very FEW relapses and they were mild, so the drug does what it claims.  I got cockey and decided I didn't need a drug anymore and didn't take anything for several years.  Now I am paying the price.  The MS has gotten worse...so back on one of the drugs as soon as my insurance company approves it.  Luckily, if insurance will not allow any of these drugs, the drug manufacturers have a program where you can get your medication free or at little cost.  NO ONE does without.  The drug companies have been great about seeing to that.  God bless them for what they try to do to help us.

Again do your own reasearch so you will have enough knowledge to tell your doctor, which one fits YOUR lifestyle and YOUR preferences.  We DO have a choice.  It's not what your doctor perfers, it's what you think is best for YOU.  Doctor's may have their opinions, but the ultimate decision is yours to make.

Good luck to you and if you have any more questions, please feel free to ask.

Best Wishes and God Bless you,
Heather  

I would suggest you do a look up Internet search of all the injectables and make a decision for yourself; which one fits more into your kind of lifestyle.  It's all a matter of personal choice.

[AMERS389]

THANK YOU FOR RESPONDING...IT IS GOOD TO KNOW YOU STILL HAVE THE REMITTING TYPE, I AM A BIT SCARED TO FIND OUT WHAT MY NEUROLOGIST THINKS I HAVE. I JUST WANT TO DO ALL I CAN TO MAKE THIS BETTER, AND TAKE CARE OF MYSELF. I HAVE FOUR KIDS AND A WONDERFUL HUBBY SO THAT HELPS A LOT. I WILL KNOW MORE AFTER THE 24TH AS TO ASK QUESTIONS ABOUT. I AM GLAD TO HEAR THAT WAITING A FEW MORE WEEKS IS NOT GOING TO CHANGE THE OUTCOME. I AM SORRY THERE ARE SO MANY OF US. WHAT MEDICATION DO YOU TAKE FOR THE MODULATOR? WELL GOD BLESS YOU AND THANKS AGAIN FOR THE SUPPORT. AMERS

[SOONERMOM]

Thanks for taking time to write such a detailed answer.  My symptoms have grown and gotten slowly worse....During work yesterday I felt like my face was on FIRE.  If I wasn't 39 w/ wml's I would've thought I was going through menopause!!!

It is funny and sad all at the same time

thanks again,
Stacey

[Heather3418]

Flair-ups usually will consist of symptoms for AT LEAST 24 hours and can last week or even months.

Sometimes, like in my course, the first symptoms did not all disppear with my FIRST flair-up.  Some remained, while others went away....until the next time.

Some people never go back into a remission.  If this was the case with you, I would expect that you would report to us that your symptoms were getting worse, as the days progressed.  This kind of MS is rare, but does happen.

Almost everyone starts with a relapsing/remitting course.  Few people start with a course that does not remit.

I have also been in a flair up starting in October and it did not start to abate until about mid-December.  So this particular flair-up was about two months.  I am thankful at the age of 54, that I still show a relapsing/remitting course.  This kind of course, 12 years after diagnosis, is actually a good sign.  I have shown slight progression of my disease, but am still having periods where alot of my symptoms (mostly cognitive) seem to go away completely.

As we age, MS tends to show less and less true relapses and remissions and we seem to be left with more symptoms after each episode.  This is not true in everyone's case.  Men also seem to have a more progressive course from the beginning.  Researchers believe this has to do with the female hormones.  In a way, it seems to protect us.  The hormones a woman produces during pregnancy is a great area of research, as it seems that MS can totally sleep while a woman is pregnant, but she will usually have an "attack" within 6 months after giving birth.  

When we are pregnant, our bodies immune system alters itself, to protect the foreign body (the baby) from our immune systems attacking this "invader."  Scientists are looking at this, to hopefully provide further treatment for those with MS...so they can get the relapses to totally abate.  If I am speaking correctly, I believe that Montel Williams takes some form of a female hormone, such as this, to help prevent further attacks.  This research shows great promise.

Best Wishes, Heather  

[SOONERMOM]

I am undiagnosed (with numerous wml's) and also have facial numbness/burning/etc.
The cold really bothers that area of my face too!

This has gone on since October.  I was  wondering how long do "flare ups" USUALLY  last, especially maybe the presenting one?  

I guess I am wondering if it is actually MS, shouldn't I have some kind of improvement  (or remittance) eventually?

Stacey

[Heather3418]

Welcome again.  

I am so sorry to hear that you received a diagnosis just before Christmas.  Not a great thing to have to face just before Christmas.  God Bless you!

I am 54 years old and was diagnosed 12 years ago.  My symptoms run from numbness and tingling in almost every area of my body at one time or another, to severe spasms that overtake my legs, every day now for 12 years.  Spasms were one of my first symtpoms, along with right torso numbness.  And I mean complete numbness.  I could not feel a pin *****, from my neck to my waist.

My first MRI 12 years ago, showed 5 lesions in the brain, one in the spinal cord.  I sometimes have troubled speaking or getting my thoughts to come out of my mouth.  When I am in a flair-up I cannot seem to concentrate, loud noises or crowds of people, seem to bother me.  I run into walls, lose my balance or even see what I think is a mouse running along the floor, out of the corner of my eye.  Of course, there is no mouse there.  Many people with MS will tell you about "the little mouse."  I am heat intolerant whether I am in a flair-up or not.  I do suffer from fatigue, than seems overwhelming at times.  

AT age 52, I found I could not work anymore, so I retired and went on disability.

I am only listing all this for you, since you asked about symptoms in your other post under Cowboy's.  I don't mean to bore you.

I have had Optic Neuritis three times in the course of my disease process and blurred vision.  I have had periods where I could not even remember how to put a rubber band in my hair, lasting only a few seconds.  One time, I couldn't even remember what I was suppose to do at a stop light.  When it turned green, I didn't know what to do.  Move forward...what?  It wasn't until other cars began to honk at me, before I realized that I was supppose to move forward.  Needless to say, I drove home and did not drive anymore that day.  I have even had bladder and bowel issues off and on over these past 12 years.

Symtpoms of MS can run all over the spectrum.  Really strange symptoms to common symtpoms that most everyone complaints about.  

Now for the MS Modulating drugs.  These drugs DO NOT stop your symptoms.  They are meant to slow down any progression of the disease and hopefully make you have less attacks.  They also are known to help with brain atrophy (loss of brain volume) which can oocur over time.

Since you say that you are starting one of these drugs on the 24th, try not to worry.  Yes MS is active all the time, but the 24th is not far away.  Gosh you have a great doctor to get you on these drugs so soon after diagnosis.  pats on the back to a great doctor.  He's not wasting anytime.

If you have any questions, please post and I or someone else here will be glad to answer any question you have.

Again welcome to the forum.  You are now among tireless friends that will do anything they can to help you.  You are never alone as long as this forum exists.

Best Wishes, Heather