In part 1 of this 3 part story, I had just been told that I was being sent to emergency for a possible case of Guillain Barre. I didn’t know what that meant but I was happy to put a name to my symptoms. I wasn’t in the emergency room long before I was in front of a neurologist and he ordered an MRI of my spine for that day, so much for waiting a month. The neurologist started to tell me the list of tests he was going to do, actually the list of tests the nurses were going to do, and I knew I was going to be there a while. At one point I thought he was just telling me a list of all the tests he could name off the top of his head. To get a diagnosis of Multiple Sclerosis doctors have to rule out everything else because there is no definitive neon sign you are here test for it. So after testing negative for about every disease on the planet he was able to narrow it down to an autoimmune disease.
By this time I’d been tested for cancer, stroke, HIV you name it. I was still waiting to hear from the neurologist about my two MRIs when he came back to test for Guillain Barre. The test for Guillain Barre is a lumbar puncture, a large needle that is stuck into your spine to remove spinal fluid for testing. The neurologist that did the LP is a nice guy, when I see him at the doctor’s office I always make sure to say hi to him, but on this particular day I was not his biggest fan. To properly insert the lumbar puncture into my spine it took eight tries, I don’t mind needles but dang this is no ordinary needle and it doesn’t look that hard on episodes of House M.D.
If you’ve never had the amazing journey of an LP I hope you never know how much I’m about to save you if you ever need one. First off the needle is no picnic but they do numb your back up, you can’t get around the needle part but believe me it’s something you can get past. What’s really critical about the lumbar puncture is what you do after the test is done. Lie down and don’t lift your head for any reason for as long as you can. If you lift your head you will get a headache that has no adjectives to explain how awful it is. I’ll get back to this. After feeling like a pincushion/guinea pig/lab rat and only having hospital food for days I told my fiancée I wanted her to sneak me in a diet coke and M&Ms that night. She did and the next morning I felt good, so good in fact that I talked the doctor into letting me go home rather than keeping me there for 2 or 3 more days like he suggested. I just had to come back on those days for a solumedrol IV for my still at this point unnamed autoimmune disease.
Lesson #1 If a doctor suggests that you should stay in the hospital for a few more days, clear your schedule and stay. That night my head hurt, not crazy yet but it hurt. The next day I managed to drive myself to my solumedrol IV and back but by the time I got home that day I was in a lot of pain. A friend of mine came over to see me and I was a mess. I’d never had a headache like I was having and it was just debilitating. I was really happy to have him there but I wasn’t much company that day. I was really confused too because I felt great the morning after the lumbar puncture so what the heck was happening. The following day was the worst day of my life, I mean I felt like I just passed the 9th gate in Dante’s Inferno, abandon all hope ye who enter here. I barely remember the morning because of the crying and screaming to go back to the hospital. Yes, I am a 26 year old male and I cried, hard. I feel bad for my fiancée because she was seeing me in agony, she drove me to the emergency room and they couldn’t put me in a bed fast enough. They gave me a couple IVs to help ease the pain and rehydrate me and actually I was surprised how fast I felt better but I was exhausted. A nurse who wasn’t assigned to me saw my file and came over to my bed. She put her hand on my hand and gave me advice I wish I had when I left the hospital the first time. All she said was “diet coke and dark chocolate.”
Lesson #2 In case of lumbar puncture load up on diet caffeinated soda and dark chocolate. WHAT?! I’d been trying to avoid this stuff since I got out of the hospital because I was trying to eat healthier. Then I remembered my M&Ms and diet coke the night before I was released, I had self-medicated without knowing it, that’s why I felt fine the next day. Why caffeine worked was explained to me like this, imagine your spinal fluid being a pool you want to keep full and the lumbar puncture being a leak in that pool. Your body can only refill that pool so fast, in my case not fast enough. Caffeine helps refill that pool faster by allowing your body to regenerate spinal fluid faster, this is important when your lumbar puncture takes hmm eight tries. The doctor prescribed me some caffeine pills and I was a new man.
If you only get one thing from this post let it be in case of lumbar puncture lie flat, eat dark chocolate and drink lots of caffeine.
I’m backtracking now but the lumbar puncture showed that I didn’t have guillain barre. Now I’m nervous, guillain barre didn’t sound so bad after I had some family do research on it for me. Neurologist comes back and says the MRIs showed 2 lesions on my spine and 3 on my brain. This news just had my stomach in knots, lesions? Between 2007 and these events I had gone to the doctor 3 other things. Once was for a knee injury and subsequent surgery so I don’t even count that. In July 2008 I had pain in my eyes, especially the left, blurry vision that would get better at times and worse at times. The Ophthalmologist told me my optic nerve looked normal under his ophthalmoscope and that I probably got hit in the head and don’t remember. Turns out optic neuritis can’t always be detected with an ophthalmoscope. I don’t blame the doctor but sometimes I wonder what an MRI in 2008 would have showed. In April of 2011 I actually went in to see my doctor because I had lost some feeling in my feet and shins for a few days but unlike this time it went away and wasn’t nearly as bad. With this information the neurologist said it sounded like it fit multiple sclerosis but he assured me the case was mild at this point and he would tell me for sure in 3 weeks after he sent my file to a group of specialists in another state. For the first time in this process I was actually going to have to wait. Three weeks gave me time to learn what Multiple Sclerosis was but something told me that it was going to be a long 3 weeks.
To Be Continued… Stay Active Stay Positive Go Forth and Beat MS!
I was advised to have McDonald’s soda and french fries after the LP. I had no issues after, don’t even remember a headache. I never knew why the soda and fries worked…didn’t know it was the caffeine. Maybe I could have skipped the fries – but hey, whatever works! I was under the impression that it was the grease.
Oft times it seems diagnosis is luck – for instance, I presented with optic neuritis and the opthamologist had experience with MS patients/optic neuritis. He called it right off. It took a while before the doctors would say with certainty “Multiple Sclerosis” (they hate to commit) even with the magic 3 (MRI, lumbar puncture, symptoms) but, for me, relatively quickly. I know some people that can’t start treatment for YEARS because the doctors won’t say MS.
Hi Sue thanks for reading my blog and commenting on the stories!
Was it a doctor that prescribed french fries and soda? I just like the thought of a doctor prescribing fries to a patient, that’d be sort of awesome. I’m glad you had no issues with the LP, mine was no fun at all. My diagnosis after my exacerbation last year was pretty quick too, I got really lucky with that. I’ve heard stories of the process taking over a decade! I’m really thankful that even though I may have had this since 2008 I was diagnosed early in the disease before symptoms became progressively worse. I hope you are doing well health wise. Stay active, it’s definitely helping me manage my symptoms and for the most part I live a fairly normal life. Take care!
“Was it a doctor that prescribed french fries and soda?”
No, it was something I found on one of the MS boards. Sadly (perhaps – or perhaps not), I have found those with MS have better advice than *almost* any neurologist I have seen. I did like you are doing, I filled up with information for about the first 5 or so years. After that, I avoided most of the MS boards. I was starting to *become* the disease instead of just incorporating it into my life. But at first – information is the best weapon. I have been active, not active, taken vitamins, not taken vitamins, used the usual medical approach, tried only alternative methods, etc. The first 10 years were pretty mild. I am now into my 2nd 10 years and it is much more challenging.