Walk MS 2014

Out Inland Empire Walk MS raised funds and awareness. So proud of our team.

Baby Girls day MS in timeout :)

Had such a good time a couple of weeks ago i met up with girlfriends that I had met in an MS chat room called MS is BS about 3 years ago from the first day we met online we just clicked. Its hard to find someone that understands exactly what your goin through when dealing with a chronic illness but wow I have found 5 people that get ME and get MS. We decided we would do a baby girl photo shoot and it was fun. The hubbies were able to meet for the first time and the kids got to know each other and even roasted marshmallows. MS=Meeting Sensational people. We have met up a few times since we first met 3 years ago but I think they would all agree this day was one of the best.
This is just an example of the photos we took
The pic of us without the baby girl shirts is a pic of the first time we met.  Haha we make MS look good. 

Tennitis an annoying part of my MS

Wow nice and quiet. The tennitis (pinging noise is my ears) was bout to have me screaming so glad its gone for a few. #MSAWARENESS month. Only a small percentage of people with MS have this symptom even those without MS have tennitis. So u may know what im talking about. Mine gets real loud sometimes that's when its the most annoying. At times its just ringing or high pitched buzz then it for me it may also sound like someone is bouncing a basketball or a washing machine swishing water around. Flonase helps weird that something you spray in your nose can help with a problem in your ears caused by lesions on your brain.
Info I found online pasted below

How is Tinnitus Treated?

Multiple sclerosis is just one of many conditions that could contribute to tinnitus. But the real question is how ringing in the ears can be treated to relieve this recurring discomfort. If tinnitus has resulted from MS, it is likely that healthy nerves have been destroyed to cause the symptom. In some cases, nerves in the brain may have been affected to signal the brain to hear ringing. Treating ringing in the ears related to multiple sclerosis is difficult since it is hard to detect the problem early on. Once diagnosed, there is no set treatment for the disorder; a doctor may focus on managing symptoms instead.

Is Tinnitus the Sign of a Multiple Sclerosis Relapse?

It is a possibility. If you are suddenly experiencing hearing issues, it could signal a relapse of your condition. Hearing problems triggered by MS have also been linked to heat exposure, in some cases. If you suspect that ringing in the ears is a multiple sclerosis relapse, it is important to consult your doctor right away. A relapse may indicate a new lesion on the brain or spinal cord that requires medical attention.

If your doctor isn't able to provide any answers to ringing in the ears caused by multiple sclerosis, it may be worthwhile to seek out a specialist. Some neurologists believe that tinnitus has nothing to do with MS. In this case, it may help to consult an Ears, Nose, and Throat (ENT) specialist to determine the cause of the condition. Over time, ringing in the ears is likely to resolve, but medical help can provide comfort if the issue is severe.

Parents Day Out in spite of MS

5 Years #flipagram made with @flipagram Music: Pharrell Williams - Happy (from "DespicabWilsonle Me 2") http:lipagram.com/f/RDGJIBUq84

the pic of me in the drivers seat before hitting the road to Los Angeles to see Charlie Wilson and Keith Sweat. For a few i forgot about. MS and PN o and TN well that was until i tried a wine cooler oops forgot i cant drink alcohol anymore it woke up every nerve in my body.o well i am learning to have fun at events where everyone else is feeling a little good because they had a nice lil drink before going to a concert the funny thing is i cant dance but then i thought who cares shoot these people just dont know im glad to still be standing on my own two feet though off beat i still danced for myself and my fellow MS warriors that no http://shop.shemarmoore.com/ longer have the ability to stand, walk or let alone dance. I danced for us all. Wearing my baby girl shirt i got from shemar moore web site 

Happy Blated New Year "ROLLIN TIL THE WHEELS FALL OFF"

Jan 2014 has been better than Jan 2013
cant believe I forgot I had a blog though wow the things MS effects. Looked at my last post it was Feb 2013 wow so much has happened good , bad and good hehe
lets see well I haven't been on steroids since my last flare jan 2013
I changed neurologists
I lost my driving privilege's
I got them back
my son graduated college
I flew to Idaho for the graduation just in Dec
I had a snow day for Christmas since I was in Idaho
my youngest is now 12 going on 16

ok you are wondering what huh driving privilege's lost and got them back well long story but here it goes.
I went to see my neuro in August for some reason she must have been having a bad day she asked me
"how did you get to the appointment today?" I said, "I drove" she says, " Well i don't think with your cognitive disorder (caused by my MS) you should be driving, physically you can drive but mentally i don't believe you should" so she told me she was sending the DMV a form which a few weeks later i got a letter from them saying my privilege's are now suspended. long story short i went and had another cognitive test done which was 3 hours long in comparison to the 1 hour test originally done last July and the results were different they showed i had a mild cog disorder not severe (dementia) which the first test showed o and the tests were done by two different neuropsychologists. I took the new results to my now new doctor (because i fired the one that took my privilege away) the new doctor agreed to send DMV new forms with my new diagnosis then the DMV sent me
1) to take a written test which i could only miss 3
2) to see a hearing officer for test results
3) the results were i scored 100% on my written test
4) the hearing officer scheduled me for a behind the wheel test
5) I passed that
6) I received my license by mail and it doesn't expire until 2018

now you ask well if the doctor didn't think you should drive why did u fight it well with MS we are in a daily fight so i thought to myself I'm gonna fight this and if i am told no then its no and i will move on from there if anything it will make me stronger because i tried. Additionally i put it in Gods hands and my prayers were answered. I asked God to move a mountain and let me drive thru it and wow he did prayers answered.

my last MRI was done a few weeks ago waiting for report from neurologist my newest symptom is neck pain only on the right side and a lil numbness on that side also but the MRI was ordered because it was time for my yearly. I like my new neuro and hope to keep him. My right leg is still a little spastic but the baclofen helps some.

meds i am now on
baclofen 60mg daily
gabapentin 2,500mg daily
clonazepam
nortryptaline (sp)
copaxone injections daily
vitamin D

yes MS still is getting on all my nerves the TN and hugs seem to be more often than not. But I am here and I am still fighting. Rollin til the wheels fall off and then when and if that happens i will figure out how to keep rollin.

Trigeminal Neuralgia - Conditions - For Patients - Neurosurgery - University of Rochester Medical Center

Trigeminal Neuralgia - Conditions - For Patients - Neurosurgery - University of Rochester Medical Center

today got a pain in my left index finger I thought o ok guess just something else goin on then looked online and found this information. Wow if you have TN it is common to have pain in your left index finger. Ugh I knew I had TN because docs already diagnosed that but this added to that if freakin very painful.

My Walk The A-Team rocked Inland Empire Walk MS

My MS Walk pics

:) I did it cooling vest and all the walk was 3 miles I walked 1/2 mile but my team did the rest of the work :) so proud of them and haha proud of me.

Understanding "I want my life back"

I think MS Awareness week has brought more sadness to me than it has joy earlier in the week I was all pumped up now im just a lil confused the more awareness I try to make available to family and friends the more response of "Im praying for you" "Are you working out?" "Are you eating right" "Your not disabled go out and walk because you can yes you will get tired but do it" (im going going,going ...so much I am only home maybe 2 days a week and even then im pushing myself ugh) or they say " I saw this 80 year old woman walking the other day" um ok saying that was supposed to make me feel better well it didn't it made me feel worse because I already know someone older than me can walk further without becoming fatigued or off balance when standing too long, or legs weaken when walking or ribs tightening or the temp effecting their bodies. Huh tired Im not tired Im freakin fatigued WTH they are not getting the messege I am so so freakin tired of no one understanding it's now making me sad again and I don't like feeling like this I hate it , I hate MS, I want my life back right now.

· · 38 minutes ago

On to the next chapter

Wow my life has gone 360 degrees in the counterclockwise all I can say is wow. Yesterday I had an appointment at the DMV I spent 15 min there getting my handicap license plate for the last 2 years I have had the permenant placard but I kept forgetting to put it in the window , I decided ok save yourself some energy by getting the liscense plate , so there it is well I got the plate now it's official the world will know my car runs but it is disabled LOL kinda bitter sweet moment for me but hey it's done and guess I should clap and say yeah I DID IT!!! but naw thats one thing that Im still not to happy about just like the wheelchair and walker in the trunk of my sporty SUV.

Pens and Needles

I know Jesus had to hurt worse than I do today but wow does this hurt my spine,my face,my hands,my ribs,my back etc hurt like heck just can't be normal for one person to be in so much pain. Made a appointment for Friday to have a look to be sure this is all nerve or MS pain and to see if I need to be given something stronger for the pain OUCH. Anyhow how are u today? because well me I'm not feelin to hot.

Hugs that r not fun

Had a great day with an old friend today went to palm springs for lunch and lil gambling wow guess I did too much few hours into it all my ribs tightened my back felt hot ,legs started cramping now mind u when I left home the TN was acting up and my right leg was already spastic needless to say we came home without goin to the movies once again MS has stuck its head in where it was not wanted.

My symptoms

My symptoms

Eye pain
Facial pain
Leg pain
Numbness hands
Burning legs
Chest tight
Forgetful
Fatigue
Neck pain
Head pain
Migraine
No sense of touch
Temp sensitivity
Back pain
Stabbing pains
Insomnia
Feel disconnected emotionally
Uncontrollable laughing or crying
Hurts to brush teeth
Hurts to eat sometimes skip meals or eat just soft foods
Leg weakness and spasticity
Neck pain
Hands shake after fine motor repetitions
Eye tremors