Hear no evil, speak no eveil SEE NO.... WAIT I CANT REALLY SEE ANYTHING?
Am I blind?
Will I see again?
Oh the pain
WHAT IS HAPPENING TO ME????
For many with MS, Optic Neuritis was our "relapse" that lead to our MS Diagnosis. At least that was the case for me. One day I am at work. Going about my day, and BAM - my eye starts watering and I feel something in my eye - at least it felt like something was in my eye. Probably an eyelash.
I pulled at my eyelid all weekend. I STILL CANNOT SEE!!!! well that isnt entirely true. I didnt see "black" which i always imagined someone without sight would see. It was like a gray smokey cloud. Some say its like looking through a lace curtain.
guess I better go to the doctor. (mind you I DONT DO DOCTORS - I dont EVER get sick...advil fixes everything)
my first diagnosis - I have a scratch on my eye and given drops. I am also told my eye is very dry so asked to use eye drops for moisture. WHEW - i can do that...
5 days later and NO improvement in the eye....but what i found fascinating is that i "forgot" I couldnt see.
FORGET?
My right eye is the one that i couldn't see out of but my brain told my left eye to do all the work, so it compensated for my vision loss. WOW - our bodies are really amazing.
I went to eye doc and she reviewed, She told me that i was permanently blind in that eye. There was no way to fix it....
WHAT?!?!?!?!?!?!?! Thankfully the next day I was sent to a Neuro Opthamalogist who diagnosed me with Optic Neuritis.
So what is Optic Neuritis (ON)?
Optic neuritis is inflammation of the optic nerve
Up to 50% of patients with MS will develop an episode of optic neuritis, and 20-30% of the time optic neuritis is the first sign of MS.
Some Symptoms of ON
sudden blurred or "foggy" vision
pain with movement of eye
loss of vision
loss of color (washed out)
Most regain vision back - but it may not be 100%
I regained 90-95% with my right eye seeing colors as "washed out"
How do i know its ON
your doctor will have you take a Visual Field test to check your peripheral vision
they may also have you have a MRI
I have ON - what do i do?
Speak to your doctor and they will probably suggest you go on Corticosteroids such as IV Solu-medral, Depending on doc's recommendation it will be 3-5 days, It may or may not be followed by a taper of Prednisone.
Ok - I have treated my ON now what?
Please speak to your neurologist about starting a Disease Modifying Drug or evaluating if the one you are on needs to be changed.
it made up of amino acids that are found naturally in the body specifically interferon beta-1a
titrate to full dose
HOW IT WORKS
Rebif is an interferon therapy. Interferons belong to a family of proteins that
naturally occur in the body. Rebif contains specifically interferon beta-1a.
This type of interferon is identical to the body's natural human interferon
beta. The exact way Rebif works is not known.
Common side effects
flu-like symptoms - Since flu-like symptoms are a fairly common side effect during the initial weeks of treatment, it is recommended that the injection be given at bedtime. Taking acetaminophen (Tylenol®) or ibuprofen (Advil®) immediately prior to each injection and during the 24 hours following the injection will also help to relieve the flu-like symptoms.
If you experience any of the below - consult your doctor
depression
allergic reactions
liver function
seizures
You should have blood test regularly to check your liver function and blood counts
AVONEX interferon beta 1a
injection
once a week
intermuscular
amino acid interferon beta 1a
often give as first medication to newly diagnosed
now has an autoinjector
titrate to full dose
HOW IT WORKS
it is believed that it stops the immune system from destoying Myelin
Common Side Effects
flu-like symptoms (fatigue, chills, fever, muscle aches, and sweating). Most of these symptoms will tend to disappear after the initial few weeks of treatment. If they continue, become more severe, or cause you significant discomfort, be sure to talk them over with your physician.
If you experience any of the below - consult your doctor
depression
allergic reactions
liver function
seizures
heart issues
You should have blood test regularly to check your liver function and blood counts
BETASERON/EXTAVIA -interferon beta 1b
injection
subcutaneous
every other day
made of amino acids
HOW IT WORKS
it is believed that it stops the immune system from destoying Myelin
Common Side Effects
flu-like symptoms (fatigue, chills, fever, muscle aches, and sweating). Most of these symptoms will tend to disappear after the initial few weeks of treatment. If they continue, become more severe, or cause you significant discomfort, be sure to talk them over with your physician.
If you experience any of the below - consult your doctor
depression
allergic reactions
liver function
seizures
heart issues
Lymphocytes are what attach disease in our immune system, Since MS patients have a hperactive immune system, these Lymphocytes attack the Myelin, Gilenya sequesters some of the the Lymphocytes in our Lymph Nodes. How this actually works for MS is unknown
Common Side Effects
Headache
Flu
Diarrhea
Back pain
Abnormal liver tests
Cough
If you experience any of the below - consult your physician right away
there is a lifetime maximum with this drug (8-12 doses over 2 years)
HOW IT WORKS
It acts in MS by suppressing the activity of T cells, B cells, and macrophages that are thought to lead the attack on the myelin sheath.
SIDE EFFECTS
As this is an agressive drug, that was designed for chemo there is a list of potential side effects, such as weakened immune system and cardiac issues. See list of side effects by visiting the NMSS website - click here SIDE EFFECTS
WHAT IS RIGHT FOR ME???
We all respond to medication differently. It is important to speak to your doctor about your options. Have your doctor educate you on the different medications and TOGETHER - decide what you will try. This choice should be made TOGETHER
RESEARCH and go into doc well informed.
No matter which you decide to go on, the important thing to remeber is always be on a DMD. Until there is a cure, this is our opportunuity to try and reduce our relapses and disease progression. The drugs listed above have all been approved by the FDA. Be weary of presented "CURES" or quick fixes. They sadly dont exist and often times its just a scheme to get your money and create false hope.
Along with a Medication, you should eat healthy and remember to MOVE IT.
*** Information in this blog regarding each drug was borrowed from the National Multiple Sclerosis Society and each drugs Websites.
This is an all inclusive site that has "channels" of information about travel, products, and much more
When you click onTRAVEL - its lists companies that either tell us what is accessible or refer you to Travel Groups designed to assist us
as there are so many destinations in the world that have made their cities or attractions accessible. i encourage you to research that particlular city to get more detail information.
In my research i have found that most major attractions have ensured that they accomade those with disabilities....here is an example for those traveling to see Mickey Mouse in either Orlando of California http://www.wdwinfo.com/wdwinfo/disabgeneral.htm
How about a Cruise? Most Cruise lines are accessible to us and have room accomadations to fit our needs. Visit theCruise Critic for their top choices of crusie lines
Dont want to travel to a different town/state?
Nothing better (and less expensive) than a staycation.
Rent Movies - Go to Movies - Camp out in your living Room or Back yard. Do you have an Amusement Parks, historical landmarks in your area to vist? Most places give a resident discount. Is there a lake or beach nearby? How about campgrounds where you can enjoy a nice picnic (if its not too hot)
I am not sure if anyone watches Push Girls on Sundance Channel (I recommend it if your dont - these girls dont have MS - but are wheelchair bound)
Its about 5 women who are wheel chair bound. They dont let their disability stop them. On the last episode they went Skiing. Yes many ski resorts have special equipment to accomadate us all. They swim, dance... THEY ADAPT, They dont say I cant do it until they try.
So as this summer comes to a close - Enjoy time with your family and friends....try something new...if you want to travel to a specific place, look them up online to ensure they are accessible to you...if you want to stay in...HAVE A BLAST!!!!
I am sitting here today...watching the Olympics, which i am glued to every 2 years whether it be summer or winter. I love the friendly competition, I love the fact that polictics and war among the countries are not seen. These athletes are here to show the world their craft among their fellow brothers/sisters. We are seeing the BEST OF THE BEST. After each match they congratulate each other. Those who may not win do not dispay anger or resentment for the winners. Their is true sportsmanship at these games.
The Olympians truly care about the other players. There is no backstabbing or name calling going on. This is a community that sticks together. Do they all agree on EVERYTHING? NO...frankly if everyone agreed on everything in this world it would be a VERY boring place.
The are making new friend and that opens them to making life changing connections.
We at SecureACure4MS have been truly blessed this past year by the friends we have made. People like you are approaching us with knowledge and expertise in an area and you want to Share it with the rest of our community. YOU care. Sharon and I are soo happy that we can be the platform to let your voice be heard.
SecureACure4MS was given that platform by many of you so that we could be hearde. Those of you that have opened your doors to us, we are truly greatful.
So as I watch the Olympics and see this "community" of Olympians coming together, I cant help but be overjoyed, knowing that we have created our own Olympian community. YOU are the BEST OF THE BEST to us. You are Olympians. We are not working towards Bronze, Silver and Gold in swimming or volleyball... we are working together on making MS a thing of the past.
