REBIF, Lyrica, and the "What did I do wrong" Conundrum.
I am a 27 Year Old Female in Colorado, USA, that had my first set of symptoms with M.S. start June 3rd.
I had, the previous evening, managed to follow the stupid-prank advice of a coworker, saying I could cure hives and itchy skin around my mid-section by wrapping myself in cellophane wrap. I wrapped my torso in SaranWrap, put on my big wooly robe, and sat down for three hours with boyfriend and friend to watch Captain America; and I overheated something awful. I've never felt overheating before, it was a fascinating experience, especially since i didn't want to get up or admit that I was wrapped up tighter than a caserole. That night, after the film, I unwrapped myself and found that my torso was numb. No discoloration, just numb. At least I wasn't itching, right? I thought, with a nights rest, this would pass.
The next day, I went to breakfast with my folks; and I was still numb. I told them what I had done, and they condemned the idea as idiotic; which it surely was, and told me to carry on. The next day, the numbness had spread down both legs, into both feet, and also, to both hands and wrists about midway up my forearm. A numbness that can only be described as a limb that's fallen asleep, with a tingling that would suggest that limb trying to wake up.
Well; the limbs didn't wake up for two months. I went in for an MRI of the C-Spine and Brain; I am a long time fighter of uveitis (inflammation of the retina) and knew what inflammation on a scan looked like. I saw a spot at the C2 vertebrae that was white; a bad sign. I told my boyfriend "that shouldn't be there."
They sent me into the hospital for three infusions of Solumedrol; a steroid, to try and calm the inflammation down. When I came out, this gut-clenching, girdle-like tightening of torso and legs now was a new symptom. It didn't get better. Moving my neck even slightly meant extreme crushing spanning first from the left across to the right side. Another infusion, another MRI; this one negative; and then the application of a Gabapentin drug called Gralise (which is the worst thing in the world, imho) and Bacloven, a muscle relaxer. Nothing helped.
Then, Around mid to late August; a spinal tap/lumbar puncture was scheduled. I went in, and a five hour procedure ended up taking seven because my spine is one tough cookie to get a needle into.
I was prescribed Lyrica and Bacloven and saw improvement, the crushing near-disappeared, the numbness/tingling? Gone. The Spinal Tap came back August 20; the Oligoclonal bands tested positive; apparently I had quite a few. They were diagnosing me with Multiple Sclerosis, and I was to come in for a chat.
The blow that was leveled and struck that day didn't end up really hitting until Mid-September. There was no further testing to be done, this was the way it was. What had started out as a diagnosis for Transverse Myelitis (something that runs in the family) now became something sinister and well-known. I was walking fine with use of a cane, and doing better every day. There was residual tingling in the fingertips, and a crushing that I could trigger by bending my neck, both of which improving with Lyrica, electric-stimulation and physical therapy.
They put me on Rebif; a Monday/Wednesday/Friday injection. They were calling my diagnosis "Clinically Isolated Syndrome of Transverse Myelitis" something I definitely preferred over Multiple Sclerosis; because MS was so very scary. I didn't have lesions on the brain or anywhere else in my spine; just that one tiny, half-inch maybe spot in the high neck.
I started on the Rebif Titration, accepting of what was now my life, and broken hearted. We are more than six-weeks into the Rebif now, and my acceptance has turned to outright frustration and depression.
I have heard from friends of friends that they cured their M.S. with dietary changes and lifestyle changes. If this is possible, and how I would like to believe it is, then could I get off the Rebif boat?
The Rebif is giving me severe insomnia (something I have never experienced) and depression along with pain and borderline-insane fluttering of the heart and upset stomach. Some forums say this passes after a while; I want a cure for the insomnia; because taking two Benadryl every night is no longer cutting it. The Rebif is powering through.
I don't get any skin-effects with the Rebif; is this true for others? No red welting, no discoloration, nothing; just a heckuva burn and lasting pressure, like an invisible bruise.
I'm also curious if it's worth it to seek a second opinion; because, in truth, I'm terrified of getting back the same answer. "Yes, it's M.S., but it's not really MS, at least, we don't know until you have another brush with it; then it's definitely MS, but for now, we're going to treat it like it's MS to prevent you from getting MS."
That's verbatim what I was told. Is it worth it to find out that "yeah, it's probably MS" or "no, they're treating you wrong?"
The common sense answer is yes; but is it primarily cut and dried with diagnosis? I mean, they don't even know what causes MS, or how to cure it...
Too Long/Didn't Read Sum-Up:
1. Rebif; the side effects are awful; get off the boat completely, or find a new drug and test new waters?
2. Second opinions after diagnosis: worth it? chance doctor is off his rocker?
3. Natural Remedies/Changing Lifestyle: is it really possible that drugs ain't the answer and I could just cut out the bad things fueling this inflammation and get results? Does that happen for lots of people?
4. Temperature? Being too warm, being too cold; both seem to have negative effects.
Thank you for your time. - Anna
6 weeks into your Rebif, definitely don't jump ship. Good advice should have been given to you by the MS lifelines nurse, that side affects can and do diminish for many. If not, I'm sorry to hear that.
All medicine comes with risk, even aspirin. Weighing benefit and risk is important where health is concerned for all.
Could this be CIS? And, never turn into definite MS? Absolutely "yes."
Can you live your life free from severe MS symptoms the rest of your life? Possibly.
Do they know "exactly what causes MS? Not exactly. Are there varying potentials? Yes.
But, and this is a big BUT, what is KNOWN is that there was an attack on your immune system (just from your words w/the dx, and lesion and o-banding). One that comprimised the blood brain barrier and attacked the myelin in you CNS.
So, what to do about MS? Treat it. Early treatment where MS is concerned is statistically significant. There are many people who were dx'd with MS over 20 years ago who may have benefitted by the availability of a disease modifier. We have a medicinal choice, something I and many others are grateful for. I'm a Rebif user as well, and I am not progressing. I'm not what I was, but I'm not in the situation I was in 2007. I get side affects, but an attack can be worse, and in my case, is definitely worse.
From what you mention, I feel the saran issue is merely coincidental.
Not knowing an exact cause or cure has nothing to do with managing the present threat. And, the threat is very real.
Meaning, regardless the cause, you need to know that the now and later can be managed. Especially this early on in the disease course.
The high neck neck lesion you mention, is indeed your c-spine - so it could not have been clear. Typically, MS is not diagnosed without visual evidence of a disease process. So, if you are just as uncomfortable with diagnosis itself as you are the medicine and to treat or not-to-treat then I highly recommend a 2nd or even third opinion to ease your mind. It's just that important. And, you will feel more confident in what you are doing :)
That's what I did, I was very uncomfortable with both as well. So, it's the primary reason I'm giving it to you straight. You deserve to have more certainty. MS is tricky, and looks like other disease oftentimes and vice versa.
Hope to provide you with some food for thought, and I'm sure others will have more good advice to give you as well.
Nothing you do or don't do causes you to have MS. Stop blaming yourself the wrap had nothing to do with it. I have MS and Cancer and genetics caused both. I can't worry how it happened it did. MS is not the end of the world I have had it 47 years and I am still very active, most people do not even know I have MS even Doctors unless I tell them. Most of us have battled insomnia at some point with MS because of symptoms and stress. I use self hypnosis.
Being newly diagnosed is hard. MS is a very manageble disease. I had to go to counseling when I was first diagnosed I freaked out so badly.
I had many second opinions because I was a doubter. All but one Doctor said yes MS. I was going to listen to the one who said I did not have MS but she sent me to an eye doctor who said Oh yes you will be diagnosed with MS in the future and I was a year later. I was told probable MS for years and with the LP it was official.
I love my life now. To me MS is just a challenge these days. I made a bucket list when diagnosed. I went in a hot air balloon, hiked the Appalachian Trail, and started riding horses. No one is guaranteed health unfortunately so you have to learn all you can about your disease and make the best decisions for you. Diets can help your over all health but not cure MS. If someone says they have a cure for MS it is too good to be true.
Be kind to yourself you did not cause this. It is not fair but in my case I hardly notice I have MS anymore. I have even learned to enjoy life with a far worse illness. Next week after six months of chemo therapy I am going horse back riding. You have to have things to look forward to. Life is the good with the bad. It is ever changing. You may be having a really bad day today but you might have a great tomorrow. Hang in there.
You have been dealt a bad hand but you can play it the best you can and there is where acceptance and happiness lies.
Thank you everyone for your responses. I appreciate the feedback and reassurances. Unfortunately my liver couldn't handle the Rebif; I will be switching to Copaxone, and hopefully, getting off the Lyrica.
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