Tuesday, May 29, 2012

My life with MS

By Bayouangel49 Thursday, March 04, 2010

Hi everyone, My name is Maria and I am 49 years old and was diagnosed with RRMS in 1983 just recently found out that I have Secondary Primary Progressive MS.  In additions to having MS, I have Spina Bifida OC #2 and a Seizure disorder.  I have been fortunate in that I am a fighter and I don't give up or in very easily and have always had wonderful family support.


My symptoms have gotten progressively worse, the numbness and tingling in my left arm and hand, the horrible pain I have in my neck that is so hard to explain, and the awful burning and spasms in my legs!!!! Now my vision is no starting to be affected in my right eye which makes walking a very taxing event... as if having an uneven gait isn't hard enough :)  Now I have trouble differentiating the depth and space in which I am walking..  What makes it harder is that some of the symptoms are caused by my MS and also my SB the pain in my lower back is excruciating when I walk, it is even worse when I lay down. 

 

I get no pain medication as being on medicaid there are no doctors and if you find one they are not up to date on current treatments..  They hide behind not being able to dispense narcotics because of all the drug abusers, well I did my research and contacted the AMA and was told that the doctor was incorrect!!!  When I spoke to him about it he curtly told me that was his policy!! OMG the heck with the patient  WOW I was appalled.  I can only hope that I can find a doctor soon because I don't think that anyone should have to suffer or live a quality of life that is less than a healthy person or be penalized for the drug abuser's. 

 

I would love to meet people thru these post's because I love helping others!  I help people in my community with various needs, i.e. applying for assistanace, resources that are available to their particular situations etc...  It helps me to feel usful since I am unable to work outside the home, which was the hardest part of the disease I've had to face so far!! Some of my favorite quotes:

 

“I am only one, but still I am one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.”

- Helen Keller


“Our greatest glory is never in failure, but in rising every time we fall.”
- Confucious


“You can have everything in life that you want if you will just help enough other people to get what they want.”
- Zig Ziglar


“Don’t wish it were easier, wish you were better. Don’t wish for fewer problems, wish for more skills. Don’t wish for less challenges, wish for more wisdom.”
- Earl Shoaf


Great opportunities to help others seldom come,
but small ones surround us every day.

 

I wish you all well and happy days ahead :)

 

Maria





 

3/ 4/10 4:20pm

Welcome to the site:)  We are a group that encourages each other.  We know that there is no cure for our illness, but that does no stop any of us from going on.  We have our good days and bad days, good doctors and quacks.  But we uphold each other.  Kinds words, words of wisdom, and support for each other.  We wish you the best, write here often, we love reading each other's post.  WelcomeLaughing

 

sherry/smomdukesKiss

3/ 4/10 6:10pm

Sherry, Thank you so much for your kind welcome email!! This is great I have been searching for a place to talk to others with MS.  I have been dealing with an excerabation for a good while now Frown   It has lasted longer than any other one I have had.  So I thought what the heck may as well share my feelings.  Thanks again for your welcoming me to the site  Be well and may your days be good.. Maria

 

 

Lisa Emrich, Health Guide
3/ 4/10 10:46pm

Hi Maria,

 

I'm so glad to see that Sherry welcomed you to the site.  We are a warm community of folks who support each other.  It might take a little while before posts are read, but they always are.

 

You've got quite a few challenges with MS, pain, and SB.  Do you ever wonder which one is causing a particular challenge?  Does it make any difference which is the cause, would the treatment be the same?

 

I have both MS and rheumatoid arthritis, and sometimes it isn't clear which one is causing me trouble.  No matter what, it's important that we keep moving forward.

3/ 5/10 9:40am

Hi,  Thank you to for your wonderfully warm welcome :)  I do often wonder but as my neurologist has told me in the past there is no way to detect which one would cause pain more.  He seems to believe that my Spina Bifida is the root cause of my low back pain, my MS is the cause of my thoracic and cervical pain and the nerve pain associated with it.  I am so glad that I found this site!!  Thanks for replying  In good health Maria

3/ 5/10 12:26pm

Hello Maria; I'm Mike, glad to have you join us. IT IS WHAT IT IS, or in our cases THEY ARE WHAT THEY ARE. GOD won't give us more than we can handle.  Maria you humble me. After several years of symptoms I was dx with R&R MS. 2-09. It was a relief to finaly find out what it was. I did'nt jump up&down, but  I thanked GOD it wasn't something worse. Something else showed up in my lungs. Took a couple down the throat byopsies, found pulmanary fibrosis. I was still working,just a little slower. Prednisone,pain pills,mussel relaxers were working on the MS& the lungs. Eye dr. dx glacoma. Steroids ran it's course with MS. Neuro  & Lunger took me off steriods. Aug,11-09 the bottom fell out. Heat,MS,breath- ing proplem, had a meeting and almost voted me out. 4 days trauma center, a  later open lung byop. Been under house arrest since then. Some meds help all   some don't. My MS is a battle, the lungs are the WAR. GOD BLESS YOU. Mike..

3/ 5/10 4:05pm

Mike

 

Thank you for welcoming me Smile I am in awe of your veracity and I know what it is like with more than one condition.  Although my SB & seizures pale in comparision to your multiple dx's.  I applaud your strength to no give up!  Your so right that the Good Lord never gives us more than we can handle.  I beleive in my heart that people like us, that are faced with a medical condition are truly the blessed ones.  We tend not to take things, people or opportunites for granted.

 

One of my favorite quotes that I tend to live by is:  

 

One of the greatest gifts you can give to anyone
is the gift of attention. - Jim Rohn

 

I think our community as a whole is more of a glass half full kinda gang, I know things get tough sometimes Lord knows I've had my share of those kinda days, weeks, months.  But I always get thru them with a smile Laughing   Mike please take care of you and stay in touch.  I have met three really wonderful friends on here in just a day!! Wow I am touched

 

Maria

3/15/10 12:12pm

Hello Maria; Whats new in your world? I'm having eye surgery wed. 3-18-09, to releive pressure from clucoma, from prednisone. I sure wish my state would put medical cannibus out for our use. It may or may not work. If dog poop would be helpful with my MS I would have a kennel. Plus it's natural stuff, right? It may be spring pretty soon. Looking forward to it. You be carefull & keep in touch.    bye for now......GOD BLESS YOU & YOURS...........Mike.............

3/15/10 9:57pm

Mike I wanted to take time to wish you well with your surgery on Wednesday and hope that it you have someone to be with you and help you afterwards.  Everything is getting better as far as my health, I am finally able to bear weight and get around a little on my own Smile .  Now I am just battling all the cognitive issues but hey like you said, it is what it is....  I'm not complaining it is so nice to have such wonderful people to share my feelings with on here!!  Please take care Mike and please let us all know how your surgery goes and you progress afterwards.  God Bless You and yours... Maria

3/15/10 10:43pm

Hello Maria; Glad to hear your having some improvements,in mobility. See Prayer works! Yes I have help. My wife of 30yrs. She's a nurse, really comes in handy, most of the time. (she won't let me get away with nothing), it's the wild thing in me. Not real wild any more, I can only try.There putting a shunt in left eye to let ex tra fluid out cut down the pressure. Minor surgery always on the next guy. Thank you for thoughts & prayers, All days are good just some are gooder. GOD BLESS YOU & YOURS............Mike.........

3/16/10 10:13am

Mike that is great that you have a nurse, I was a EMT and a nurse until I could no longer work.  It just somehow doesn't work in my favor LOL.  I know that part about not letting you get away with anything though, my husband is the same way!!  I am not a good stay in bed person and that drives him crazy(hehehe) I was raised with the up at dawn and work all day attitude so it is very very hard for me to have others do for me.  Well you will be in my prayers tonight and Im sure everyone else's.  Please let us know how your doing  Take care and God Bless you and keep you..........Maria

3/21/10 6:37pm

Hi ; This is Mike. Eye surgery went well. Now, some pain, mostly discomfort. The Dr said next month the other eye. Hope your doing better. You be carefull, will  talk yo you later .  GOD BLESS YOU........Mike...........

By Bayouangel49— Last Modified: 09/21/10, First Published: 03/04/10