Hello I am new here and just need to vent.
A little histor:
1. I turn 50 on Monday.
2. I am female.
3. Mostly independent my whole life.
4. Diagnosed fall of 2008. Took my eye doctor a year before sending me to an eye specialist for a blurry right-eye that was healthy. He just kept saying it was blurry because of old age and get use to it. I finally blew and he finally sent me to a specialist. She agreed healthy eye but could not see the opti nerve so ordered a MRI; hence the fuzzy white marks and proof of a brain despite my Mom's decision. Next was the LP and then the wonderful mystery of MS.
5. Put on Avenox. And in time right eye actually got better after several prescriptions and glasses later.
Took about 3 years. In the meantime, balance got a bit funky.
6. Now Dr. wants to take me off of Avenox. And I have numbness in legs, tingles, and nerve pain. Now on the Gabby pill for numbness.
7. I live in the pacific northwest of USA.
I am a little frustrated in all the wonderful information about drugs for MS. It appears to be replacing one bad situation for another. I meet with Dr. on Monday for evaluation and next steps. See I was put on IV steroids this week but it blew my blood sugars out of the water. Took me off the IV Therapy. But Thursday I was feeling almost normal. No cane, energy, and legs were almost functioning like before MS.
I will say as a single person and limited budget the co-payments are just eating my savings. I drive a 13 year old car because I cannot afford a car payment and increased car insurance. Any ways I need a walk in shower because stepping over into tub is like climbing a mountain on most days. Not to mention I am a tea-pot easy to tip over now. For get the walk-in shower better I miss work. Yeah I have increasingly missed work which was never an issue before MS. I use to donate accumulated off-time for those in need.
And it is funny but Handicap parking is always far away from the entrance, well for me it is an issue as every step is a mircle before my legs get heavy and stubborn. And the front entrance has a curb with no railing which is like a barrier to my getting up it even with a cane. I know I could get a wheelchair if when I get rich and famous, but I am fighting with every once onf non-energy I have. Yes, my fatigue is like out of this world making it hard to concentrate and limiting the task choice of the day.
Well my Dr. has diao me to be the rare form of MS. I did ask if he was going to find something rare please make it a rare diamond, but he no comply. I did ask Jiffy lube for a new lower body make over but they said they could not accommodate, ya think it would be possible with all the technology we have available.
Humor aside (my defense) MS is not for the whimpy. Now I cannot concentrate to trundle the sword to avoccate for myself the best course of action to regain some diginity back. Yeah, I piddle myself without even trying and on Oxy for it. Been told age does not matter, well unless you sneeze and have MS.
I have so many Doctors, meds, and appointments I barely know if I am coming or going. Yet, no improvement because my symptoms came back on Friday with a vengance. Just want it all over. I feel like I am in the deep end of the pool failing to keep my head above water and there is no one around to even wave bye-bye to me. The feeling of defeat is heavy upon me and I have no idea where to turn to next.
My future looks bleak at best and retirement a forgone dream as my savings is now cob-webs.
I appreciate the fact many of people have it worst off compared to my situation I am sure and my right to whine is very small. I just feel like I am in a bubble of darknest right now with no end to the tunnel. My hope is dwinddled as it appears nothing I do tames this destorying beast of life. The ficklness of MS is just overwhelming me.
No one really knows the cause...but I can say I grew up in the industrial age of hybreed foods, DTT pesticides, two nuclear melt-downs, water containiments, air containiments, and plastic foods which as a child I had no control over. Yet, no one really knows what causes MS; they say a virus but one would think after all this time they would have seen it under the microscope. Hence, without really knowing the problem and cause how can one find a solution to MS?
What I am finding is a whole lot of speculation, and that makes me a bit uncomfortable when it comes to my MS health. Is there any true factual information about MS (As it really affects millions, yet no real facts?) And I am suppose to make decisions by Monday as to the next course of action. And I am suppose to make decisions on speculations? Decisons on Monday determine my future well being and it scares the heck out of me as I begin to drown in that deep end of the pool call knowledge.
I am a fighter but my boxing gloves are getting a bit worn.
Thank you for letting me vent. I do wish with all I have to give that you be well and safe.