MediTest
26 Jan 2019
Author
Sarah
Title

New Patient Stories.

Body

"Patient Stories" is vastly out of date.  It seems as though Jim had not put anything new up for years.  Many people have come, got better and gone without having their stories told.  Now we have much more spare space, so please send me your story and we will put it up.  People still part-way through treatment are as welcome as anyone, maybe more so. 

Let's start this year as we mean to go on!

Comments

My reason for taking over this site is that I could not have just got better and then got on with my life, whilst people with MS are still being told that they have an incurable disease.

If I hasn't avoided going back for my neurological results when I was 25, I would have been told this then, but instead I chose to wait until I was 45 and the disease became obvious.  By then I had found a husband who was able to make me better and himself in the process.

So please give me some stories, which could be illustrated if you wish, and I will put them all up.

Sarah

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I hope someone is writing: there are two people especially I have in mind!

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Once Chicago thaws out this weekend, I'll do a little audit and write a few people, asking for their stories. Darren, expect an email. lol

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

What about your story?

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Well, been awhile since I've posted because I've been rather busy with the 'next thing'...

Developed MS about the time I was suffering from collapsed lungs (left side June 2007 / right side December 2011) and underwent VATS with pleurodesis. Diagnosed with MS June 2011 after misdiagnosed and admitted to the hospital for stroke - turns out it was 'first' MS relapse (actual first relapse was June 2007 after first VATS, but left undiagnosed). Gave up on local neurotic neurologists after second relapse in 2012 (third all time) while depending on inteferon (Avonex), so got with Vanderbilt's MS Clinic and Dr. Sriram and put thru two ABx stints (1st 18 months, waited two years, then 2nd for 9 months). Relapse free since 2011 - and using CAP vigorously.

Summer of 2018 I developed bloating, abdominal cramping and pains, loss of appetite, to finally build up to vomiting and going from 127lbs to 97lbs - pretty emaciated... looked like an auschwitz victim - headed to the emergency room. Three bouts in the hospital trying to find out what's wrong - first time waste of time, second time for colonoscopy with biopsy, to third time to remove a cancer growth from my ileum.

Cancer of the Ileum... who the heck gets cancer of the ileum? (Ileum is part of intestines that connects the small intestines to the colon) Very hard to detect, but surgery excised it and found 16 nearby lymph nodes negative, but carcinogenic cells were found in the fluid and some gelatinous material in the abdominal cavity, so I'm doing the three Chemo drugs every two weeks (one uses a pump I stay hooked up to for three days) to get rid of any residual cancer trying to grow, etc. Gone thru three cycles so far...

MS is doing fine - still doing the vitamin/supplement part of CAP - and no relapse triggered from all the trauma of 2018. Fought off a chronic sinus infection that showed up in my 2017 MRI (used fenugreek, stone root, collodial silver, etc) as a preventative against relapse, too. Just trying to regain weight and strength, but chemo nausea no fun. Mainly concentrating on the cancer treatment for now, but still faithful to my CAP regime...

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Wow, Batgirl. Through the wringer and back again. SO happy you've had no stress related relapses.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Batgirl, if you have gone through all that with no relapse, the MS must be pretty well expunged!

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I've been wondering about this. If so, it might be one of the reasons why the immune-system transplant procedure seems to work for some people. They get high doses of chemo, I believe.

Elizabeth Anne

I've read where some have used chemo to treat MS, but not 'sold' on the idea :-}

However, much more interesting is that an MS patient depending on interferon type treatment, who then gets cancer, will have to stop the interferon to do the chemo - whereas an MS patient depending on CAP type treatment, would be able to continue both the CAP and chemo. The issue is interferon conflicts with chemo treatment big time, but CAP is not only compatible with chemo, but helps enhance the chemo:->

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Batgirl, Could you start a new thread about the chemo possibility? I'm afraid most people won't see your comment, here on a thread about writing patient stories, when it might be helpful if they could.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi