This was really interesting to read about Vicki.
So many acronyms. I was especially intrigued to read about benign MS. I wonder if that is what I had? But nothing showed on my MRI when I had my single episode of optic neuritis. It was also interesting to read that it can take up to forty years to enter the stage of secondary progressive MS. I wonder if there are any cases where you remain in the RRMS category?
Anyways...I am greatly looking forward to reading your next piece. But then again I always do...you are an excellent writer.
Hi Merely Me,
As we read about MS, there are so many different names and labels, sometimes it is difficult to know if something applies to us or not. I tried to put all of them together in one place. Part of what made it so interesting to me is the number of labels described the same way, and different descriptions applied to the same label. Then different sources report the distribution of types differently. Add to that the fact that the disease itself varies so much among MSers.
The promising thing is there is progress - there is less confusion now than 20 years ago as research continues. Ah progress. A word that is scary when applied to the disease, yet hopeful when applied to disease research. But I digress . .
Acronyms. Yes, they are everywhere. I hesitate using them because they are so similar - RRMS, SPMS, PPMS, RPMS - yet the words are long and also similar. The acronyms do not end with disease labels - for example, MRI.
I have to say, Merely Me, that I, too, thought of your story the first time I read about benign. Is it? It sure sounds like the same story to me.
Then the difference in the time it takes for the transition - add the factor of the disease-modifying drugs which may delay it! I also wonder if there are cases where the transition never happens. I read where up to 90% evolved, so what about the other 10%? Natural attrition, another example of inexact percentages, something else all together?
Well, I said MS is an interesting disease, and it seems every exercise proves it over again. Answer a question and more questions come up. That is part of what makes writing about MS fun. There is always a new twist or something completely new to learn.
Thank you for your kind comments and interesting questions.
Oh no! Just this week I found another label - Worsening Relapsing MS (WRMS).
This term was used to describe the transition period between RRMS and SPMS when the MSer is still experiencing relapse and remittance periods but is definitely progressing or worsening in a gradual, steady way.
Sorry I left it out, but there may even be more out there. If you hear of one, please let me know. Thanks.
HOW CAN YOU BE SURE IF YOU HAVE MS OR NOT.I HAVE BEEN ON BOTH SIDES OF THE MEDICAL COUNTER.I WORKED AT MAYO CLINIC 7 YEARS.I WAS A HAIRDRESSER 21 YEARS.AND I HAVE BEEN BASICALLY A PATIENT ALL OF MY LIFE.THE REASON I QUIT DOING HAIR IS BECAUSE I HAD 3 C-SPINE DISC WITH SPURS.AND ANY GOOD DOCTOR KNOWS THAT BLOOD LABS DO NOT NECESSARILY TELL THE TRUTH.YET THEY TEND TO TREAT TESTING RATHER THAN COMMON SENSE.FOR EXAMPLE I HAVE HAD A ACUTE CHRONIC PAIN IN MY L.R.Q. FOR A YEAR AND A HALF.I HAVE HAD A COLONOSCOPY,ENDOSCOPY,CT/ABDO,SONOGRAM OF MY GALL BLADDER AND LIVER FUNCTIONS CHECKED.I CANNOT TAKE NSAIDS THEY HAVE PUT ME IN THE E.R.6 TIMES BECAUSE EVERY G.I. DR. WITH A NEW PILL WOULD SAY THIS CANNOT HURT YOUR STOMACH.AFTER 6 TIMES AND IT TAKING A YEAR FOR MY STOMACH TO QUIT HURTING I LEARNED HOW TO SAY NO TO DOCTORS.WE WERE TAUGHT THEY WERE LIKE GODS AND YOU NEVER QUESTIONED THEM.WELL NOW I HAVE A COMPUTER AND I ADVOCATE FOR MYSELF.I HAVE LEARNED THAT GOOD DOCTORS DO APPRECIATE THIS.I THINK IT MAKES IT EASIER TO GET DOWN TO THE REAL QUESTIONS INSTEAD OF READING YOUR MEDICAL HISTORY GOING BACK 30 YEARS.MY PSYCHIATRIST SUSPECTED GALL BLADDER REMOVAL.I TEND TO THINK HE IS A BETTER INTERNIST THAN MOST DOCTORS.MY MRI REPORT SAID INDICATION IS PARESTHESIAS OF THE HANDS AND FEET.DIMINISHING COGNITION LEVEL AND DEMENTIA LIKE SYMPTOMS.
NONSPECIFIC SCATTERED FOCI OF T2 PROLONGATION.NO RESTRICTED DIFFUSION OR ABMORMAL ENHANCEMENT.NO MASS,MASS EFFECT OR MIDLINE SHIFT.PATENT INTRACRANIAL FLOW VOIDS.PARANASAL SINUSES ORBITS APPEAR AND MASTOIDS APPEAR NORMAL.THE IMRESSION :NON SPECIFIC CHRONIC ISCHEMIC WHITE MATTER DISEASE.DUE TO SMALL VESSEL ANGIOPATHY. OTHER DEMYELINATING DISEASE IS NOT EXCLUDED BY THIS EXAM.WHAT DOES THAT LAST SENTENCE MEAN? I WANT MY IDENTITY TO BE KEPT CONFIDENTIAL.AND THANK YOU FOR YOUR HELP
THANK YOU VICKY.THAT IS THE ANSWER THAT HAS THE MOST COMMON SENSE I HAVE HEARD IN THE LAST TEN YEARS.ALL IT TAKES IS SOME COMMON SENSE.WE DON'T UNDERSTAND OURSELVES SOMETIMES WHAT IS HAPPENING TO US.THEY ARE DOCTORS.THEY HAVE STUDIED.BUT MAYBE THEY DID NOT STUDY WHAT DISEASES OF TODAYS TIME.I STILL THINK THAT I AM GOING TO FIND OUT WHETHER I HAVE MS PROBABLY THROUGH SOME OTHER TEST AND BY ACCIDENT.BUT YOUR WORDS HELPED SO MUCH.THANK-YOU.JO
I've enjoyed reading through your blog. I was unexpectedly diagnosed with MS 3 years ago at the age of 28. I say unexpectedly because I had no symptoms prior to the day my whole left leg went numb and stayed that way for 2 1/2 weeks. Numerous tests later I had a diagnosis. At the time I was a mom to a 2 year old and was completely blindsided. For me, the depression and emotional pain has been the hardest part of my illness. I started treatment immediately, and now 3 years later I am still relapse free and my last brain MRI showed no signs of progression.
I wish you all the best!
Hi Stef,
I'm so sorry you are diagnosed with MS at such an early age and with such a small child. As I read through people's stories, I continue to be impressed by all of the young women with MS and young children who handle it so well. Somehow I think you will too. I think I was so lucky that mine was diagnosed when my kids were teenagers, and old enough to help take care of themselves.
MS is one of those strange things that blindsides many of us, patients, family and friends, and doctors. For some it starts gradually, for others suddenly, and it comes and goes, or continues, or comes and remits for a while.
You sound as if you are doing quite well. Please keep in touch, and until later, I hope it continues.
Vicki,
I've known you so long: pre-MS and even now. You are an extraordinary woman with remarkable writing talent. I read your entire very informative article and stand in awe of your ability to keep on keepin' on. You are helping a lot of people.
I marvel at your fortitude and perserverance! I am honored to be your friend.
Vicki,
I have been diagnosed with probable MS. First occurrance 6 months ago. 1 brain lesion. Vocal cords w/neurological deficit (volume of voice affected). However, I am confussed about remissions. I continue to have symptoms daily, so how do you know when you are in remission? My daily symptoms are different. They seem to rotate. However, they are better then they were previously. If I were in remission, I would think it would be fairly obvious. Is it unusual to go this long without a remission? or is this a sign demonstrating which type of MS I have.
Any help or information you can provide would be appreciated.
Thank you. Wendy
Hi Wendy,
So sorry it took me so long to get back to this post and your comment.
It is not unusual for there to be a long time between relapses, and sometimes a new symptom can hang on for a long time before a recovery or partial recovery. There is no standard schedule, and there have been very long times recorded. MS is surprising like that.
I hope by now you have some answers and your MS is becoming manageable.
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While I have Primary Progressive MS, it appears from this article that I have the Malignant variation. From the first day at the age of 51 that I realized something was wrong, to becoming bedridden, took only three years. I knew what I had only about two weeks after it started; my mother had MS for the last forty years of her life. I do not know what type she had, though I knew what MS looked like. It took nearly a year, 17 blood tests, two MRI scans, and a spinal tap to convince doctors I had MS. They even gave me antidepressants because they thought depression might be causing my physical symptoms.
Hi, David,
Thank you for sharing your story.I was touched as I read your comment.
It sounds as if you have an interesting story, and I would like to hear it. There are two aspects -- growing up with intimate knowledge of MS through your mother, and the course your MS took after you were diagnosed.
Based on my research, it sounds to me as if you have a malignant form of primary progressive, but I just read about these labels.Your doctor could tell you for sure.
I do not know anyone with a story quite like yours, but I would like to.