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Tag Archives: Neuropathy Awareness Week

In honor of Neuropathy Awareness Week May 14-18, 2012

I’m reposting my May 2011 blog post  ‘When Life Gets Messy: How I Handled an Adverse Drug Reaction (Side Effect Neuropathy)

Note: I am NOT a paid representative for the product mentioned in my post, but I am sharing my experience as an advocate to hopefully help others in a similar position.

When I was thinking about this new blog, I thought to myself the title should be “WHEN LIFE GETS MESSY”.

When Life Gets Messy: Adverse Drug Reactions, I Was Treated For A UTI and Woke Up Paralyzed On One Side

I was out one evening for dinner with my youngest daughter and her close friend and her mother. We were all having a nice meal and enjoying one another’s company. But I felt funny and knew something was wrong so I excused myself and went to the ladies room. I found that I was bleeding excessively and knew immediately it was a urinary tract infection (UTI). You see I am no stranger to UTI’s since this is another side effect I encountered from post-radiation burn. I went back out and whispered in my daughter’s ear that I needed to go to the hospital that I had a UTI and so politely excused ourselves without alarming our dinner companions.

First let me back up a little and explain that ten years after my surgery and radiation treatments I discovered yet another effect of the radiation burn, I was diagnosed with lymphedema in one leg (http://en.wikipedia.org/wiki/Lymphedema). I learned to manage this by being a fighter, a survivor, a woman determined to live life to its fullest. I accomplish this by a daily combination of compression pump therapy, leg wrapping, compression stockings, elevating my legs, and specialized lymphatic massage therapy.

Back to this particular evening which was about five years ago when I got to the hospital they immediately began to treat me for a UTI, wanting to stop the bleeding which was excessive I was given a strong dose of Leviquin through an IV drip. It was odd because my family thought this might be the drug I took orally a year prior and had a negative reaction in the form of seizures but in the moment we couldn’t recall.

The Levaquin stopped the bleeding immediately but the next day, I woke up paralyzed in one leg. We later realized that this was in fact the same drug that I took in a much lower dose orally and now at a stronger higher dose IV it resulted in a more severe adverse reaction causing Neuropathy in my weakest limb, the leg with lymphedema. It was so devastating to wake up and not be able to stand. The pain was so severe and I screamed and cried for a long time until they regulated my meds.

After several months, I had regained some mobility but due to Gabapentin Rx treatment. It took away a lot of the pain, but still causes increased numbness, instability, and poor balance. I was determined over the last few years to search for the right treatment. It’s a funny thing my daughter actually found this treatment early on when I was first diagnosed but when we asked my doctors and case manager they said there are so many treatment systems that are not FDA approved and they advised me against it.

But I am so pleased that my daughter and I were so persistent. Several months ago my daughter noticed that the Cancer Treatment Centers of America (CTCA) uses this same treatment system which I noted on their site under post-colorectal cancer survivors treatment and neuropathy. The system was still too costly at nearly $2000 plus. The suggestions I found through my research were that this treatment should be coupled with therapy which meant co-pays on top of the initial cost. But oh how God is good. We prayed that he would make a way that would enable me to afford to purchase the system. As we continued to research via the web, read books and forums to our surprise the system’s website had a special offer the price was half price through their Canadian vendor for a limited time. I purchased the ReBuilder Treatment System (http://www.rebuildermedical.com). Since I’ve started using it, I’ve regained movement in my toes, which were previously numb and lifeless. I can now feel temperatures again, and I even walk better at times without my cane though I am still careful! The greatest result from this treatment is that it has virtually eliminated all of the painful neuropathy symptoms. I am so grateful to God for this miracle and for finally gaining some relief.

I highly recommend investigating if you have neuropathy to determine whether or not this treatment is right for you. It is also covered up to 80% by Medicare.

I am now pursuing measures to avoid future poly pharmacy adverse drug reactions. I had a negative reaction to in the past but didn’t realize at the time of my medical emergency. What happened at the hospital may have been avoided if we were able to identify this medication as something I had adversely responded to in the past.

Questions To Ask Your Doctor About Neuropathy (link)
Alternate Treatment Options: ReBuilder System (click here medicare and insurance form Original Medicare pays 80%. If you have Medicare and a supplemental plan, you may be eligible for 100% coverage) 
can help eliminate the painful symptoms of peripheral neuropathy (This treatment worked for me). ‘Canadian vendor’, link to www.ReBuilderMedical.ca Note from the vendor: “The 2407 model offer has a 30 day money back guarantee in North America. Purchasing through our site has become a viable option for those who are unable to get insurance or Medicare coverage, or for those who wish to have the 2407 model, which MediCare does not cover. All orders are shipped from the manufacturer in Charles Town, West Virginia.  In an effort to make the unit more available to those who cannot afford it, we have also been able to reduce the price of the 300 model basic package to about $500.” Please write to me to request special coupon code to save 10% off the purchase of a ReBuilder 2407 system from now through May 1, 2012.

Discussing Side Effects with Your Physician
Another thing I’ve learned are many times doctors aren’t familiar or don’t necessarily agree with all of the side effects listed on official drug brand website.

Its important to document any side effects you have to medications/treatments and make your doctor aware. Not disclosing something to your doctor can be harmful.

Healthcare treatment data mining sites like Cure Together http://curetogether.com/ can give you insight on success of treatments categorized by disease and patient response/outcome to treatments.

You might also referr to reliable sites like http://health.nih.gov for helpful literature.

I had a doctor wanted to prescribe a medication that is now in litigation for sever side effects. Glad I decided against it and found another option that worked well for me with no side effects. You can also referr to FDA medication guidelines found on official pharma rx site. (e.g. Levaquin http://www.levaquin.com/sites/default/files/pdf/Levaquin%20Med%20Guide.pdf#zoom=100)

Today I am so grateful I continue to see improvement because I wouldn’t settle for mediocre. I keep my mind set to live life to its fullest every day! I don’t think about or worry about next week. I choose to live today for today! When I get up every day I ask my God to be my strength and when I can’t walk he is my legs. I want to be the VOICE for those who can’t fight. I want them to WIN like I am a WINNER. LIFE IS MESSY at times but we can choose to clean up the mess when it comes our way.

With love and God’s Blessings,

Dee Dee
Email Me: littledeet@yahoo.com
E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.

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Posted by on May 15, 2012 in Uncategorized

 

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