Introducing Myself

For my first post I will talk a bit more about my plans for this blog and about me. I originally planned to start a blog to document my life dealing with MS, the diet I was following, and then eventually through the process of HSCT. In past years I have led a frugal homesteading lifestyle and incorporating MS into the mix made things interesting.

So a bit more info about me. I am 33, married, and a mom of 2 young kids. I was diagnosed with MS in late February 2015 around the time my youngest turned 3 months old. Like most people with MS I got the run around from doctors and it took months to get answers and a diagnosis. My first real symptoms showed up 12 weeks into my last pregnancy, it started with tingling, numbness, and burning sensations shooting up my legs. When I brought this up to my OBGYN I was told it was related to the sciatic nerve and was completely normal in pregnancy. Later in the pregnancy I continued to have the numbness and tingling in my feet and legs but I also developed balance issues, vertigo, fatigue and dizziness. Again I was told that is completely normal in pregnancy and to not worry about it. My previous pregnancies were fairly easy and I never experienced anything like this, but I took the word of the doctors and figured it would go away after the birth. Four days after giving birth I had my first big relapse. Numbness got way worse, had arm and leg weakness, hot/cold flashes, dizziness, cog fog, fatigue, trouble walking and vertigo. I went to the ER and the doctor looked at me like I was a complete nutcase, in fact she told me that this is 100% normal after a pregnancy and to deal with it. I was sent home and told I should be back to normal in a few months. So I continued on with life although I had major difficulties. 3 months later I started getting worse again, all the same symptoms just way worse plus full body numbness and right eye pain. Went to urgent care, they did some blood tests and an EKG, said it was pregnancy hormones and looked at me like I was nutty, and was sent home and told it could take up to a year after the birth to feel normal again. Next day I followed up with my family doctor, got a similar response although he did some more blood tests. The next day I got way worse to the point staying upright when walking was difficult, so back to the ER. I pleaded with the doctor to figure out what was wrong and amazingly she listened. She did some more blood tests and then asked if I was willing to stay a few hours longer to get a C-Spine MRI which I agreed too because I just wanted answers of some sort. She had said at the time that she suspected Multiple Sclerosis and that an MRI would give an answer. So finally after more than 9 hours in the ER I finally got my diagnosis of MS and received my first infusion of steroids and then was sent home. Later that night I felt much better, I could think more clearly and symptoms weren’t as bad. Over the next week I had 4 more infusions of IV steroids, a neurology appointment, and more blood draws to rule out NMO. I skipped a day between my first and second doses of steroids because it was Sunday and the infusion center wasn’t open, but that Sunday night was brutal. I was stuck in bed for almost 16 hours straight, the vertigo was so bad I couldn’t move from my spot in bed, intense pain, and any movement caused excruciating dry heaving spells. Literally the worst day of my life. It took several months to be able to walk somewhat normally and be able to fully function in everyday life.

In the time since my diagnosis I’ve had relapses approximately every 3 months, some worse than others but most involving optic neuritis.  Most of the time I have recovered without the use of steroids, but for one really bad optic neuritis attack in September, the eye pain was so intense I did a round of oral steroids.

How am I doing now?  Well my MS symptoms come and go and fluctuate from day to day.  I have permanent numbness and tingling in my feet and in my fingers, I occasionally have vision problems and walking problems.  Cog fog comes and goes along with fatigue.  Hot weather and PMS are the main triggers for a lot of the symptoms. My EDSS score is currently 1.5 but fluctuates at times.

As for treatments I have tried, I started taking Copaxone in April 2015 and continued with it until last week.  I don’t really think it was helping as I continued to relapse on it, but I got my HSCT date before I could switch to any new meds.  I do take between 5000-10000iu of Vitamin D every day depending on the time of year.

I played around with diet and had some success with it helping with my symptoms.  I first started on the OMS diet, basically vegan plus fish and that made my symptoms way worse.  My body just could not handle eating more rice, grains, and beans.  I then moved to a more anti-inflammatory paleo diet and went gluten and dairy free and that helped with a lot of my symptoms.  The cog fog and fatigue became rare occurrences and overall I felt much better.   I have been incorporating some gluten back into my diet as I know I will be eating bread products in Russia and so far no real issues other than increased tingling in my fingers.

I am now 2 months out from leaving for my HSCT in Russia and am trying to get everything figured out.  Over the next 2 months I will be posting about what all I am doing to get ready for Russia. Then I will be blogging throughout my treatment in Russia and recovery after returning home.

Thanks for following my journey, I hope this blog will help others in planning their own journeys to pursue HSCT for MS or other autoimmune conditions.

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About Cat

I'm an outdoorsy gal, wife, mom of 2 and MS Warrior. I underwent HSCT in Russia in April/May 2016 to halt my MS and documented my entire journey while I was there in my blog and am now continuing to blog through my recovery.
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4 Responses to Introducing Myself

  1. ms_interest says:

    Hi Cat,

    Really enjoying your blog. Thank you.

    Can I ask ; how long did you have to wait on the list for Moscow HSCT? I have had MS 12 years, but gone downhill rapidly since Jan 2016.

    I try to stick to OMS diet (more vegan) and enjoy it, but recently ‘gone off the rails’ big time (junk food and alcohol binges). Currently panicking and self-hating and want to get HSCT done ASAP.

    Regards, ms_interest

    Like

    • Cat says:

      As of now I believe the waitlist for Russia is about 1 1/2 years out, people applying now are being told that 2017 is full and they will get dates in early 2018. I applied in late November/early December 2015 and was told at that time that I would get a cancellation date in late 2016/early 2017 or earlier if one came up, then at the end of February of this year I got offered a cancellation date at the end of April. Russia bases dates off of medical records though, so the more info you can send in when you apply the better. Many people are told when they apply that they will get a cancellation date in a much shorter time-frame, like I got. I believe that the wait time for Russia will get much shorter than 2018 just because so many people are on both the Russia and Mexico waitlists and if they are offered an earlier date in Mexico they go there and that frees up a spot on the Russia list. Everyone always said that Mexico has a much shorter waitlist, although I’ve seen some people recently post on the Russia list that they just got their date for Mexico in December 2017, so seems as though the waitlists are now about the same length. But most people are on the waitlists at every location and do not remove themselves from other lists when offered a date at one location, so times should speed up, and Russia increased treatment capacity starting this August and plans to increase it again sometime next year once more remodels get done, and I think Mexico is supposed to be upping their numbers they can treat at well.

      I honestly don’t know if diet really helps slow the progression of MS, it definitely helps with inflammation and symptoms, but I’ve seen so many people get HSCT done that followed a strict vegan diet for years and still progressed, same with those following OMS and paleo, think it really comes down to luck on whether you progress or not. I know the inventors of all the different MS diets are opposed to HSCT, but as of now it is the only treatment that can halt progression.

      I believe the Philipines, Singapore, and Israel have the shortest wait times for treatment, but also cost significantly more. Russia and Mexico seem to have the same wait time as of now at least according to how dates have been given out, Mexico is first-come first-served, Russia bases it on medical records. Most people apply at numerous places and see what time frame they are given for treatment at each location.

      If you haven’t applied yet, I’d get started by getting your medical records and neurologist reports from your doctors. Russia wants your medical history as well as reports from your neurologist and then the last 2 MRI reports you’ve had, just the written report from the radiologist not the actual images. They also will have you fill out a short application that asks questions about medications, your EDSS score, etc. Mexico just requires you to fill out a short form and that is it, they don’t want to see any medical records. And if you haven’t already, join the various groups on facebook for HSCT, each location has a group designated for just that location and you can ask all sorts of questions on there as well as find out exactly how to apply, research papers authored by the doctors at those locations, etc.

      If you have any other questions feel free to ask, either here or on my facebook page I setup for people to follow my journey, just search for Cat’s HSCT Journey on facebook and it should pop up.

      Best of luck!

      Like

      • ms_interest says:

        Cat,

        Thank you so much for the advice and for a thorough and helpful and thoughtful response. It’s very much appreciated. I sure hope you’re right about the Russia wait times, really do. I need to get a grip on helping myself, as Im a bit of self destruct mode with health at the moment (think it was a bit of depression that kicked things off). So I feel really (really) guilty that I have HSCT planned – and then ‘use it’ as an excuse. Anyway, sorry, kinda off topic. You’re lucky, Dec ’15 > Feb ’16 – thats great!, well done. I’ve been offered a date March 2017 with Russia 😦 which i know is good, but frankly, Im, going downhill fast and need something sooner (as selfish as that is). Ive sent Russia my radiology / neuro reports. I have another MRI this month (in few weeks) ad wills end them that too. I think im relapsing now (I blame myself, due to poor diet and being reckless with health). ive had MS 12 years. Hope you stay happy and healthy Cat. Thanks again for your efforts / blog and personal response. Thank you. Really.

        Regards, ms_interest

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      • Cat says:

        I did luck out with my date, although for me my MS was very aggressive in my c-spine and I was relapsing every 3 months and I believe that is what got me a cancellation date. Definitely send Russia your newest MRI report, if it shows a lot of progression that could get you in sooner as well. March however isn’t all too far off. I know many people that strictly follow diets are opposed to taking any DMDs, but are you considering doing a course of IV or oral steroids to help with the relapse? Stress is a huge trigger for MS that is for sure, unfortunately it is hard to avoid in life. Mexico may be able to get you in sooner, they supposedly have a cancellation list, not sure if that is true or not just what I have heard. Hopefully you can get a sooner date. Sadly so many people that are scheduled to go to Russia back out at the last minute and then it’s too late for them to get a replacement and the spot goes unfilled. If you have the money, are not on any DMDs, and can go on very short notice, you may be able to send Russia a message and let them know you could take a last minute cancellation, you would however have to be able to get a visa within a short period of time or if you are from a country where you can get a 3 year multi-entry visa you could have that ready to go. Even though Russia does not have a cancellation list I know of several people who were able to take a date within 3 weeks of going to Russia because they could do that, one being a lady that was treated with me. Worth looking into if that is something you could do. Good luck to you wherever you opt to get treatment. Recovery seems to be rougher for everyone then the actual treatment, but I will say for me now approximately 3 months after getting my stem cells back, most of the time I feel way better then I did pre-HSCT. Best of luck to you on getting the treatment and for your future. Take care!

        Like

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