I’m Jen, co-founder of Affordable Hyperbaric Solutions. I came across Mild Hyperbaric Oxygen Therapy (HBOT) in my research on stem cell therapy. I started doing treatments and found that my sleeping improved, my life long battle with eczema improved, and I felt well overall. We (my husband and I) purchased our first chamber – the cost of it was quite astounding. Our main purpose at Affordable Hyperbaric Solutions is to bring you, our customer, a mild hyperbaric oxygen chamber into your home at an affordable price.
It all began about 4 ½ years ago. I was experiencing a very odd and oh so painful sensation in my right neck which would wake and then keep me up at night. The only way I can describe the sensation was a “painful tickle with a dizzy sensation”. I was in constant pain and up all hours of the night – usually only sleeping 3 hours a night.
After 6 months of this weirdness and being sleep deprived and oh so cranky, I decided to go to my primary care doctor, who referred me to a neurologist to get it checked out. Alright, time to see the neurologist – maybe he could give me some answers to what was happening. He did the normal in-office brain reflex testing and didn’t find anything unusual so he wrote an order to have a brain MRI…Just in case. But his initial diagnosis was “cervicogenic dizziness”.
So the results of the brain MRI came back……Relapsing Remitting Multiple Sclerosis (RRMS) – about 65 brain lesions shown on the MRI. At least now I had the answer to the dizziness – lots of scars (lesions) in the brain stem and cerebellum.
So now what! In that same appointment when the neurologist told me I had RRMS, he gave us (my husband Brian and I) several glossy, fancy, and expensive looking pharmaceutical binders laying out their case as to why their drug was the one to take if you have RRMS.
I was to look these over and pick a drug, any drug, and in the meantime, get a cervical spine MRI. I looked over the pharmaceuticals over the next couple of months. Most of the drugs had unpleasant and sometimes frightening side effects. A couple of the drugs had the possible side effect of contracting PML (Progressive Multifocal Leukoencephalopathy) – a very serious, almost always deadly (and if it doesn’t kill you, you’ll be severely disabled), side effect. I wanted nothing to do with this… FOR THE MOMENT. At the time, I thought “I’m going to tackle this thing naturally and not be on some pharmaceutical.”
Thankfully, yes there were still things to be thankful for, the cervical spine MRI came back clean….FOR THE MOMENT. So I flooded myself with research at this point. I needed to find out what I could do to stop this thing from happening. I knew what could happen, but couldn’t picture it happening to me. I kept running across some common MS symptoms such as fatigue, the MS hug, walking difficulties, and optic neuritis. Thankfully, I wasn’t experiencing any of these MS symptoms……FOR THE MOMENT.
And not surprisingly, everyone had “THE CURE” for MS. But at the end of my grasping at every straw , over 4 years of researching, and 5 or so relapses later – I found the answer…THERE IS NO CURE – YET! There are just things I can do to make life a bit easier. So, over the past 4 years, these are some of the natural things I’ve tried:
♦ Paleo Diet (specifically, The Wahls Protocol). I currently avoid gluten as much as possible, have very limited dairy, and just try my best to get a lot more veggies and fruits into my diet. I actually did the Wahls Protocol for about 7 months and found it to be helpful, but certainly not a cure.
♦ Adipose Tissue Stem Cell Therapy (had this done in June 2015. (I plan to post more about this soon)
♦ Hyperbaric Oxygen Therapy: Tried this because I read about it during research on the stem cell therapy / would increase the stem cell count and improve the results I would see from the stem cell therapy. I’m doing this treatment currently. It helps me sleep and seems to help keep my lifelong battle with Eczema under control.
♦ Yoga (this helps manage my muscle spasms)
♦ Vitamins and Supplements (currently I take cranberry pills on a daily basis as well as 5,000 UI every day)
♦ Acupuncture ♦ Chiropractic Adjustments
♦ Dry Needling
♦ Massage / Physical Therapy: I still get a massage about every 10 days to help manage muscle spasms. This is very effective for me. When I tried when I was first diagnosed, it actually seemed to exacerbate the pain.
♦ Chiropractic Neurology – I wouldn’t recommend this. I spent a pile of $$ and saw minimal results.
About 3 years ago, I had another cervical spine MRI and the news wasn’t good. Had several new enhancing lesions and one large one on the thoracic spine – which was no doubt causing some of the symptoms I was experiencing (bladder issues, both legs went numb, walking difficulty). So, I went on Tecfidera. Can anyone say “ulcerative colitis flareup?” I quickly stopped taking it (was only on it for about 3 weeks). It took about 6 months to get the ulcerative colitis (UC) under control and I lost about 25 Lbs. which for me wasn’t a good thing.
And the hits just keep on coming! A little over a year ago, I had a particularly nasty relapse. I knew I HAD to do something drastic. I had already tried changing my diet, acupuncture, chiropractic neurology, supplements, yoga, etc. Nothing was helping me not to have another relapse and this relapse was sending me into a tailspin. I could feel myself getting worse by the week.
I knew I HAD to do something...anything!
About 8 months ago, I switched neurologists. I started seeing a doc over at the UC Denver Anschutz Campus. Being a research hospital, they’ve got clinical trials going on almost all the time. At the time, I wasn’t on a DMD. This is what they call the drugs people who have RRMS take…Disease Modifying Drug. So, the doc told me about a study they were conducting and that I absolutely needed to be on a medication. I knew he was right, I could feel myself steadily going downhill over the 3 or 4 months preceding seeing him. So I got on the study which basically was: I would be on either Gilenya or Tysabri and would have a brain MRI once a month and get the medication for $0. The Tysabri scared me the most with the whole PML thing, but I figured it might be a good time to be on the Tysabri – they would be doing MRI’s and watching me. Of course they tested a few preliminary things (one test was the JC Virus Antibodies – I was thankfully negative) before they told me which drug I would be getting. They say that if you test positive for the JC Virus antibodies, your risk of getting PML increases – along with a few other factors. The dreaded day came when I was going to find out which drug I would get – I was very nervous but decided whichever drug I was going to get, I had to leave it in God’s hands and charge ahead. So that morning consisted of finding out that I would be getting an infusion of Tysabri that very day (stop this ride, I wanna get off!) and getting a disability score done – turned out to be 6.0 at the time. So, Tysabri it was – deal with it. So, after the 3rd infusion and 4th brain MRI, my results finally came back “No New Lesions”. Well, Praise God! First time in 4 years that I’ve read those words on my brain MRI.
Just to recap - some of the pharmaceuticals I’ve tried in the last 4 ½ years since my diagnosis:
♦ Aubagio – took this medication for 1 year with minimal side effects. After 1 year, MRI revealed new lesions…time to find a new drug!
♦ Tecfidera – took this medication for 3 weeks. Side effects – ALMOST KILLED ME! Had a major ulcerative colitis flare up. I’ve had UC for 30 years. The UC flare up lasted almost 8 months – I was glad to have survived it. Time to find a new drug!
♦ Plegridy – did 2 injections over 4 weeks. Major flu-like symptoms – not gonna work for me…time to find a new drug!
♦ Tysabri – started the monthly infusions September 2015 as part of a clinical trial. So far, minimal side effects. My last MRI showed “no new lesions” – for the first time since my diagnosis! HALLELUJAH!
All of these medications run in the neighborhood of $5,000 per month…OUCH!
Stay tuned…will continue with my story soon.