Hello I am Frustrated

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Hello I am Frustrated

Postby Vanhen » Sat Feb 04, 2012 10:38 am

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.
Vanhen
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Re: Hello I am Frustrated

Postby want2bike » Sat Feb 04, 2012 11:00 am

Check out the diet section of this site. Maybe what Dr. Swank or Dr. Wahls have to say might be helpful. I can relate to your Dr. telling you it is old age and you have to live with it. My doctor said the same thing but once I found out what was making me sick I got well immediately. Illness is caused by the bad things we put in our bodies and if you give your body the right nutrients you can get healthy again. They will never know what causes MS because there is no one cause. Anything that effects the nervouse system can cause MS. Virus, pesticides, artifical foods, and heavy metals all can effect the nervous system. Do you really think if the drug companies had a majic pill that cured MS they would give it to you and put themselves out of business? Do you think if your doctor could cure you he would and have no more customers.? There is a lot of money being made on sick people.

http://articles.mercola.com/sites/artic ... nking.aspx

http://www.healingdaily.com/Doctors-Are ... the-US.htm

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!
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Re: Hello I am Frustrated

Postby Vanhen » Sat Feb 04, 2012 11:21 am

You are right...but a lot of finanicial energy has been put into MS research for a long-time now...and even diet is a speculation. There is a long list of vitamins for MS but no factual research that it does a hill a beans except in an individual state of mind and situation...but specific to MS little to no facts.

And yes the medical arena is making lots of money off of frustrated people with medical issues. The gravy boat always wins out on the health and well being of the population. Does little to support my next few days of decisions. Most medications for MS have side effects that are not very attractive. I am kind of attached to my vital organs...I do not know but I feel they are kind of important to life. I could be wrong. So in my current eyes I would be trading one annoying situation for a possible risk factor of a more deadly situation; which I guess the medical field would make more money off of that situation. Puts one in a very vulnerable situation as the hands of greed usually wins. I do realize there are very caring medical professionals doing their best. But they call it practicing medicine for a reason, the human body is very fickle and unique from one person to the next. I understand this, but does not mean I am not frustrated at the moment.

I think it is time for the MS professionals to re-group and create a path for the MS patient based on fact. Yes, I checked the medical journals and it is muddier than water.
MS my mate is an adventure, like going to war.
My dog is not spoiled; I'm just well trained.
Vanhen
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Re: Hello I am Frustrated

Postby want2bike » Sat Feb 04, 2012 12:03 pm

Diet is not speculative. Science shows that bodies can heal themselves when eating the proper diet. Your next few days is wheither to believe the drug pushers or doctors with a proven record. Dr. Swank treated MS patients for over 50 years and his record of stopping the progression of the disease was excellent. It cost nothing to follow Dr. Swank diet or Dr. Wahls diet and they have proven results. The drug companies have proven results of people taking the drugs. Check out the end of the article on facebook and see what the takers of these drugs have to say. These are real people who have been harmed by these drugs. It is never too late to stop harming your liver. Ask your doctor to show you some proven results that drugs work. Ask the doctor if the drug companies are paying him.
http://www.facebook.com/notes/ccsvi-in- ... 1295097210

http://www.franksherwood.com/tnms.htm

http://www.greenliveforever.com/healthy ... tion-claim
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Re: Hello I am Frustrated

Postby Vanhen » Sat Feb 04, 2012 12:27 pm

Good words want2bike...thank you.
MS my mate is an adventure, like going to war.
My dog is not spoiled; I'm just well trained.
Vanhen
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Joined: Sat Feb 04, 2012 9:40 am

Re: Hello I am Frustrated

Postby lyndacarol » Sat Feb 04, 2012 2:21 pm

Vanhen – at this website we understand your frustration and we welcome you and any venting you must do. In general, I agree with what want2bike has written. I encourage you to read the dramatic story of Dr. Terry Wahls, Iowa City physician who was in a reclining wheelchair due to MS a number of years ago, developed a program of diet and exercise, and now rides a bicycle several miles every day. (http://www.TerryWahls.org)

Even if a healthy diet is not the cure to MS, there is no negative effect on your body as there may be strong medications. I urge you to start by giving up sugar and artificial sweeteners. A study from UCSF in the last couple weeks has even called sugar "toxic;" there has even been the wild question in the news that maybe the government would start regulating it! Keeping a food diary of what you eat may uncover a correlation with your symptoms.

My philosophy is always "what do I have to lose?"
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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