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I guess I should start my story where all good stories start: at the beginning. Huh. Okay, not at the beginning, as in, "I was born in..." because that would be incredibly boring. But the beginning as in: it started with a little numbness and tingling in my fingers.
Now, as a hypochondriac, I'd already have stopped reading my own blog, because the instant I hear about a symptom of any kind, I am convinced I have the hideous accompanying ailment. For those of you brave enough to soldier on, here's what happened next:
I ignored these symptoms for several months, as any scared-of-a-death-sentence-diagnosis hypochondriac worth his or her salt will do. My coworker Charlie helped me adjust the level at which I held my hands when I typed. See, I had decided by then that it was most likely carpal tunnel syndrome. Yep, that can cause numb hands, and my imagination failed in its usual task of conjuring up fatal diseases. When the adjusting trick didn't work, I figured it was time to see a doctor. "What's the worst that can happen?" I thought. Did you ever see a movie when the main character says something ridiculous like, "Well, it can't POSSIBLY get any worse!" or "Phew, glad that's over!" and you shout at the screen, because you know it will get worse and it's most certainly not over. So, yeah, that was me. Had I for a second suspected I had a serious illness, I would not have been so cavalier about making that appointment.
The Appointment
"I think I have carpal tunnel," I announced to my primary care physician. "And I've been under a lot of stress."
The doctor asked me about my symptoms. There had been a new, odd thing I'd noticed: an electric-like jolt down my neck when I bent my head. And there had been an incident at my 35th birthday party.
My niece had given me a pair of earrings. When I went to take the ones out that I was wearing, to swap them for my pretty new ones, I couldn't feel my fingers. I thought I was holding an earring, but in between my thumb and pointer finger was nothing. I laughed it off at the time, and tried to again at the doctor's office, bleating more insistently about the stress and my theory of carpal tunnel. He appeared unconvinced and then did a scary thing. He said I should see a neurologist.
The Second Appointment
The neurologist turned out to be my dream doctor -- kind, patient, warm, and reassuring in the face of my ever-increasing unease. She did an exam, the details of which escape me now, and then ordered some more comprehensive tests. There was bloodwork, an MRI, and, horrifyingly, a spinal tap.
"Do not go home and get on the internet," she cautioned me, saying there was a wealth of misinformation that would only frighten me. (Apparently, my wobbling voice and panicky attempts at being funny clued her in to my state of mind.) There was no chance I was going to do something so foolish. I've looked up the most innocuous medical-related items ("how to remove a splinter?") and found 2,345,987 links to "cancer." I wasn't ABOUT to start Googling my symptoms. Better to bury my head in the sand and pray for the old stress/carpal tunnel diagnosis.
The Followup
Alas, that was not to be how my story went. I was at another family party (we're really not big party animals; not sure why this tale involves so many festivities) when I got a call on my cell phone. It was my neurologist. She wanted to see me in advance of my follow-up appointment, which was scheduled for about a week later.
"Bummer," I thought. Okay, not really. "Sh!t! F*ck!"is probably more likely. I've seen my share of movies and TV shows to know a "We need to see you early to discuss your test results" call is never a good thing.
The next day I was with my husband, drowsing in the waiting room. No, really, I was! But only because my neurologist had prescribed Valium for me to take before my spinal tap, and I decided this appointment merited another dose. When it was our turn, she didn't waste any time.
"It's multiple sclerosis," she said, very gently.
I cried a little bit, and then we talked about my options. She wanted me to begin taking disease-modifying drugs right away and recommended Rebif, a three-times-per-week injection. Overwhelmed, but confident in her advice, I agreed. She said a nurse would come to my house to show me how to give myself the shots.
My Very First Relapse!
Apart from the benefit of being in the care of medical experts, as well as the probable benefit to being on medication, it's a damn good thing I was diagnosed when I was. It couldn't have been more than two weeks after my diagnosis when I had a major relapse. In the MS world, that means something fairly scary happens. In my case, I was at work and began noticing a weird feeling in my right foot. I was supposed to go to a karate lesson with my friend Cleo that night, and I was secretly relieved to have an excuse not to go, mostly because I sucked at karate. The weird feeling got worse, and then it spread to my right hand. In just about an hour I was literally unable to walk or hold anything in my right hand. (Had I not known about the MS, I would have assumed I was having a stroke.)
"This could be it," I thought, sobbing as I tried to make my way down the hall at work. "I'll never walk again."
A kind soul helped me into a chair and my husband came and stuffed me in the car. We went to the ER to be sure I wasn't, in fact, having a stroke. One CT scan and several hours later (by then I was able to shuffle around on my own), I was released with instructions to call my neurologist the next morning. When I did, she prescribed a three-day course of intravenous steroids.
The first day of steroids, I went to a center where a nurse put me in a cushy recliner and monitored me to ensure nothing terrible would happen, like an allergic reaction. Once it was established that I could tolerate the steroids, a nurse came to my house to show me how to administer the following two days' worth. I had a catheter in my arm; she told me about changing the bag with the drugs in it, keeping the spot dry, and how to look pathetic while dragging around one of those stands with the IV attached.
The steroids worked wonders. After the three days were up, I was able to walk again and use my hand. I wasn't walking at what anyone could call a brisk clip, but I was just so damn happy to be WALKING that I didn't complain. (That's probably not true; I'm sure I did complain.)
Fast Forward
Now I'm going to fast forward several years, because (a) I'm getting tired of typing, (b) this entry is really long, and (c) my memory sucks. My Very First Relapse was the worst. I've had two other occasions to be given steroids. In the second instance, I was experiencing the MS Hug, a delightful feeling of intense pressure across your midsection. It's like wearing a very thick belt that's meant for someone four sizes smaller than you. During that episode, I lumbered around the workplace like the Hunchback of Notre Dame; I literally could not stand upright.
My third episode was a little more than a week's worth of shooting pains in my head. I called them "brain zaps," because I am incredibly clever. They were about a second's worth of stabbing pain and were totally random, although I could count on one every morning when I woke up and got out of bed. A pleasant way to start the day, indeed.
Little more fast-forwarding...I am no longer on Rebif, and I no longer see my kind neurologist. I am on Copaxone, which is a daily injection, and I see a doctor at Georgetown University Hospital in Washington, D.C. After a routine MRI, my neurologist decided that I had too many lesions (and at least one big one, which makes me think my brain looks like Jupiter with its giant red spot) for her to be comfortable handling. She wanted me to see an MS specialist. The doctor I'm seeing now is also very nice and patient and thorough. I have an appointment to see him Jan. 18. At that appointment, I'm going to ask him about the benefits of a dramatic diet that purports to work wonders in MS patients. It's called the Swank Diet. I am in no way affiliated with anyone related to the diet; I'm just hoping to share my experiences here. The diet looks pretty freaking hard, but I am lucky enough to have a husband who's willing to give it a go with me.
Here's a link that explains the basics:
http://www.swankmsdiet.org/About%20The%20Diet
I'll be checking in as I face 2013 with NO CHEESE (pizza is my favorite food). Ideally, in time, I'll have some tasty recipes to share.
Happy new year!
Ms. CrankyPants
Hi Ms. CrankyPants,
ReplyDeleteI do love your title.
I was dx with RRMS in 2009. I do not, or ever have taken any of the DMD's. Shortly after I was dx I started the Swank Diet for MS. I also started taking high doses of Vitamin D3. The diet is difficult at first, but eventually you do get used to it. After a year on the diet, you can add in a couple of no no's once in a while (red meat, a tad of dairy etc). I am not in any way suggesting that what is right for me, will be right for you, but the diet and vitamin D, seems to be working as well as, or better for me, than the drugs are for others. Thing is, MS is a different disease for us all, and treatments that work for some, may not work for others.I didn't think the diet was working, so after a while I went off it, and had a relapse...coincidence some may say, but I went back on the diet.
There are also a couple of other diets for MS- gluten free and the Paleo.
Most neuros will tell you that there is no diet that will help you overcome MS symptoms, and only some will reccomend vitamin D. supplementation. The Swank diet certainly won't hurt you, nor will the Vitamin D (unless you take toxic amounts), so my thoughts are, it can't hurt and may even help. In my case I do beleive they are helping.
Good luck with the diet.
Cheers!
Karen,
DeleteMany thanks for the encouragement! The diet looks difficult for sure, but what I've read indicates that it's worth it. I'm glad to hear it's worked for you and that you're doing well without DMDs.
I'll be interested to hear what my neuro says Jan. 18. As you point out, and I've read this too, many people have said their doctor dismissed diets such as Swank for being critical to preventing MS progression. I'm hopeful mine will be supportive. Regardless, I'll be trying it. As you said, it can't hurt! My neuro has told me I should take Vitamin D, and I'm currently on 4,000 IUs daily. (After my Very First Relapse I was given a prescription for some mega dose because bloodwork revealed my levels were dangerously low.)
Take care!
Ms. CrankyPants
Ms. CrankyPants,
ReplyDeleteThough the Swank diet seems a little intimidating, it really isn't so bad once you get used to it. I remember when I first started the diet I couldn't wait to hit the one year mark so that I could eat red meat again, however, once i hit one year on the diet I could not even fathom eating it. I think the Swank diet has that provision in it to ensure that you stick to the diet at first, but then once you've been on it for a while you realize that you really don't miss that food. I am actually pretty disgusted by all of the food that I used to eat. Chick-fil-a was my pizza, but now I can't believe that people put that grease in their mouths.
My mother suggested that I reach out to you since you talk to her frequently but we have yet to communicate. I just wanted to wish you luck on your journey to Swankinism (I obviously made this word up, haha) and I hope to speak to you soon.
Susan
P.S. Don't listen to your neuro if he tries to tell you that Swank is a bunch of crap. My current neuro doesn't feel like it's helping my MS but he also says that it isn't hurting it so if I want to be on it to stay on it. I really think that it's helped me a lot so when people try to tell me otherwise I just ignore them. :)
Susan,
DeleteGreat to hear from someone in the Swank ranks! (hahaha)Your post is very encouraging; I'm struggling a bit to wrap my head around this new way of life. Please keep me posted on how things are going, and I'd love any tips. Oh, and I am not just a pizza freak; Chick-fil-a is damn good too!! Looking forward to the day when I can be amazed at how crappy my diet was (is).
Ms. CrankyPants (aka Susan)
For 10 years I actually was diagnosed as a hypochondriac with Carpel Tunnel before they decided it had really been MS all along! My first MRIs came back clean, so they assumed I was crazy. You would've loved the report from the first MRI I had that did show lesions. It suggested such delights as possible ALS or Progressive Palsy (but most definitely not MS, the guy reading the MRI assured my doctor. My poor husband flipped out and immediately began to consult Dr. Google, but I knew that was a dangerous consultation to embark on. ;-) Ultimately, it was decided by others outside my rural area that the guy at the local hospital who read the MRIs was an incompetent idiot. It was, after all, M.S.... which is what a few non-doctors had suggested to me when my symptoms first appeared a decade before. (I don't like doctors much.) I am not on any of the drugs. (Perhaps images of my brainstem might make for some interesting art/craft pieces... hmmm.... )
ReplyDeleteI haven't tried the Swank, and only have a vague sense of what it entails, but I was diagnosed with Celiac Disease some years before the MS, when I first started showing symptoms. (For your inner hypochondriac, Celiac Disease is more common in people with MS, although most neuros don't test for it. Diet-related issues--even real, bonafide diseases--are not, it seems, any doctor's area of expertise.) Before the Celiac, I'd already known I was allergic to several foods, including dairy. I have lived with intense dietary restrictions for over 10 years--no dairy, no soy, no gluten, no citrus, no nightshades, no nuts, no corn. Sorry this is all about me--I'm not trying to play competitive Diseases That Suck That Have Diets That Suck--but I do want to convey that I understand what it's like, and to assure you that a restrictive diet is doable and will become second nature after a while. It will take some getting used to, but it is something you can live with. And, yes, it can really suck at times. But you do get used to it. Don't despair. It will get easier. I find that the hardest part is getting other people to take your dietary needs seriously, rather than the dietary needs themselves. At any rate, good luck to you!
Paper Chipmunk (I just had to type that; hereafter, I'll call you Ellen!),
DeleteOh my, your description of your dr. visit after your first MRI made me shudder. ALS is definitely one of those diseases that petrify me. In fact, there's still part of me that thinks one day the neurologist will say, "Ooops! My bad; it's ALS, not MS. Sorry!!"
Sounds as if you win the Diseases That Suck That Have Diets That Suck! On the Swank Diet, you are allowed citrus, dairy, gluten...just no red meat, dairy, or chocolate. That last one does, indeed, suck hugely, but I appreciate your supportive words. I know I can do it; I'm pretty excited, actually. (We'll see how long THAT lasts.)
Ms. C-P (aka Susan)
Funny how that is--there are some things that can make you feel lucky to merely have MS!
DeleteActually, my doctor just kind of rolled his eyes at the report and proclaimed that, after 10 years of symptoms, I'd be dead by now if I'd actually had any of those things! What had happened was I'd seen the report slipped inside my file on the desk as I was checking in at the doctor, before I'd talked to the doctor. "Oh...," I nonchalantly said to the office help, "I'd meant to ask... I'd like to have a copy of that for my files..." They hadn't realized he hadn't talked to me about it yet. I must say, it was a more interesting read than the usual waiting room lit. :-) My MRIs had always been clean up to this point, but I'd had a suspicion that this time that was not going to be the case. As I'd been leaving the MRI itself previously, the tech doing it was just way too nice and... concerned?... as I was headed out the door. I knew he'd seen something.
Seriously, good luck with the diet. Let's face it--restrictive eating for medical purposes sucks no matter what! But if it helps...
I always try to get a read on the MRI tech! They've always been nice (maybe because there have been lesions every time!). But usually I do my nervous jokey bleating about "You'd let me know if there was something awful, right? HAHAHAHAHAHAHAHAHA!" Of course, they can't. Probably their looks of concern are for my mental health (rightly so).
DeleteGood move on getting your hands on the report! After my very first one, I also got a printout to take to the doctor. As my husband and I were leaving the hospital, I edged a portion of it out of the envelope and saw something that mentioned an alarming amount of "white matter." I stopped reading right then and there. (I've mentioned I'm of the bury-your-head-in-the-sand school of thought, right?)
I feel, after reading your blog, that I could predict your 'outcome/future' with a 60% accuracy of 100%. After my own MS post DX 22 years, symptoms starting at age 10, reading over 100 MS blogs, etc etc, I feel like a guru. NOW, that hymble statement said/typed, I would be a fool to do so because all your friends would tell you not to listen to me, you would think me an arrogant wannabe doctor of sorts, and your cat might hunt me down. But, I WISH someone like me had told me back in 1990, all that I know now. No, you go on that diet, you will believe it is helping greatly, but as I sit here in my assisted living home...I wish the world was different and I could tell you how things are probably headed for you. If someone had told ME, I would not be living in an assisted living home. OK, I can't help it, I will tell you THIS: Eat a healthy diet. Exercise. Learn all you can about MS from research/university updates, not just blogs like mine. Focus on balance. Keep your sense of humor always at the ready. FEAR NOT. Whew, I got that out. I do believe I can see your MS future though. We think we are all so "one of a kind, each body different," but after hearing MANY MS stories---we are way more alike than different. WELCOME TO THE WORLD OF MS BLOGGERS!
ReplyDeleteOh, dear. That sounds rather ominous. Go ahead and lay it all on me, I promise not to send Capt. Nap or his nimble assistant, Squeaky, after you. Have you tried the Swank Diet? Some variation thereof? So sorry you are in an assisted living home. That can't be easy.
DeleteThanks for the welcome. I'm happy to be part of the gang!
First,no I have 'tried' any "diets" -- I eat very healthy though. My great aunt lived to 103, my mother is 85, my uncle lived to 99, etc etc---my diet is 100% better than any of theirs. The Swank diet was a huge fad from the '70s---you just HAD to be on it! Then it was Atkins---I have had them all thrust at me, "DIANE, you just must!" No, I mustn't. Moving on, you will be fine. You will have some LONG periods of remissions (to which you will praise and credit Dr Swank for), you will relapse, get scared, try different diets, drugs, doctors---the chances of you living in an assisted living home are small indeed. You will either 1. Never need any mobility device OR 2. get a cane, then, walker, the wheelchair, but chances of you ever needed a wheelchair, if you die before 81, are slim. The BEST thing to do is find a PT you 'click' with and start a program for life of yoga like stretching combined with weight training & cardio. (All eventually doable at home and inexpensivly) AND, keep your sense of humor! Ms. CrankyPants, you will find this MS to be an inconvenience, no worries. Keep in mind that just because you got MS, it doesn't mean you have a GET OUT OF JAIL FREE card for other conditions/dieseases, stay on top of normal cancer tests, etc. Keep the romance alive! Stay mentally active, as you are doing by blogging for one. HEY! Except for the $$cost, life is good for me right now. I was b4 MS, and am 22yrs post MS, very happy.
ReplyDeleteThanks, Diane, for your positive words. I do feel better reading what you wrote. I figure eating this way won't HURT, so until it does or I become too miserable, I'm willing to give it the old college try. I love your idea of finding a PT. For sure, I need more physical activity.
DeleteFunny you should mention the get out of jail free card. That is exactly what my neurologist said to me, just when I was congratulating myself on getting "my" disease and getting it over with. Intellectually, I knew that wasn't how it works, but it was temporarily reassuring, until he piped in with that remark.
Waiting for my diagnosis. Getting a little nervous reading about your symptoms because I too, can catch a disease simply by hearing about it!;) I went blind in my left eye last month and have since had a few other fun things happen. Waiting for my second neurologists opinion...I think I'll read the rest of your blog now. I see it was from last year so I hope you are doing well now! I'm attempting to change my diet..was actually googling if I can cheat on it and found your blog. LOL I just want to know if I can celebrate an occasion with a piece of cake or a scoop of ice cream and not end up in the hospital!
ReplyDeleteOh, no! Sorry to hear it. The waiting can be so difficult. But, actually, it was somewhat of a relief, as I was imagining ALL KINDS of things. And there is a really great support system in the form of MS (and other) bloggers.
DeleteI've been doing really well. I'm on Copaxone, after being on Rebif for a couple of years. I'm also on the half-assed version of the Swank Diet. That is, I cheat now and then (and haven't been in the hospital yet!). Anyway, please let me know if you have any questions. Good luck!!