My Story: As of January 2011

PhotobucketMy name is Matt Allen G and in August of 2010 at the age of 20, I was diagnosed with Multiple Sclerosis (MS). This is the story of my first encounter with this life crippling disease that effects over 250,000 people in the United states alone.

Where it all began for me
I awoke one night at about 2 or 3 in the morning with a sharp pain in my lower back shooting down my left leg. It was excruciating and I’ve never experienced anything like it in my life. I thought maybe I had just slept in a bad position so I decided I was going to try to take a hot bath to relieve some of the pain. Before I could even get in, I found myself laying on the floor in pain.
I ended up going to the emergency room where I was told it was probably just a sciatica which is caused by inflammation resulting in pressure against the sciatic nerve: pain. They sent me home with all the pain killers I could ever want along with a hefty medical bill for the ER visit.
For the next week or two I was fine, wasn’t even taking my pain killers. I now however, started waking up with a warm sensation in my right leg as if the hot sun was beaming through my window and shining upon my leg. Though my leg felt hot, it was not warm to the touch. At first I blew this off to be nothing like any other guy would…
About three or four days after I started noticing the warm sensation I realized something was wrong. I was taking a shower when I crossed my right foot under a small stream of water leaking from the bathtub faucet. If you have ever seen this in the past, you probably know that when this happens the water is usually extremely hot. When the water touched my foot I experienced a strange tingly sensation. I was not fully awake so it caught me by surprise and I did not know what to make of it until a few seconds later when I crossed my left foot under the water and burned myself. Confused, I crossed my right foot back under the water and it was at this point that I realized my right foot was numb. I could’ve held my right foot under that hot water all day if I wanted to.
After I got out of the shower I started experimenting. I used a knife to see if I could feel the sharp edge or point. I could not… Although, it was not completely numb because I could still tell that something was touching my foot. I would compare it to a trip to the dentist. When the dentist shoots you up with Novocain your lip usually feels fat. You still have some basic sensation however if you were to bite into your lip you could easily break the skin and not know it. This is how my foot felt.
I immediately called the nurse line where it was recommended that I head straight to urgent care. When I got there they told me it was more than likely my sciatic nerve acting up again despite the fact that this time it was in the other leg. Nothing to worry about, it will go away…
By the next day the numbness had spread up my leg to about my knee. Within a week it spread up the rest of my leg, past my waste, up my back, finally ending below my right shoulder blade. At this point, I had done enough research to know that the sciatic nerve starts at your lower spine and travels down each leg. Therefore, there was no way it could effect above my waist. This was not my sciatic nerve…
Back to urgent care, looks like a pinched nerve in my neck. More painkillers and some steroids (Prednisone) to reduce inflammation. I was suspicious of this pinched nerve theory because I didn’t understand why my symptoms would start at my foot and work its way up if the problem started in my neck. But despite my suspicion my doctor seemed to be sure that this was nothing more than a pinched nerve.
Over the next couple of weeks my body began to fall apart at an extremely rapid rate. I first developed what is known as drop foot or foot drop. This is basically the paralysis of the muscles in your lower leg that are in charge of lifting your toes up when you take a step. As a result your foot drops and drags on the floor which can cause you to trip, fall, and seriously injure yourself. I struggled with walking for about a week and at first it seemed like I would be able to deal with this okay.
About a week later I started losing the fine motor control of my left hand and my walking had become much worse. I was loosing my sense of balance. As far as my left hand, I first started noticing a drop in fine motor control when I sat down to play guitar one day. I could not seem to hit the right frets on the neck of my guitar and at first I played the denial card. I told myself I probably just haven’t played guitar in a long time and have lost some of my skill. Within the next few days it was clear, my hand was no longer functioning properly. The strength seemed to be there still but the coordination was gone. I couldn’t type on the computer, do my hair, button my pants, or pretty much anything else that required any kind of coordination with my fingers. Soon I realized the left side of my body was slowly going paralyzed…
A Possible Diagnosis
At this point I had finally made an appointment with a neurologist. Right off the bat, she told me her guess was MS. At the time, I did not know what MS was but what I did know was I had heard the term on my favorite TV show “House” a million times so I knew that it could not be good… She ordered an MRI and CAT scan. When I got home my research began and it did not look good but we’ll get to that in a minute…
Around the time I got my MRI done my symptoms had got way worse. I could barely walk, my hand was useless, and I had pretty much lost my sense of taste except for one small portion on the right side of my tongue. Weird…

PhotobucketMy MRI results were in so it was back to the hospital to review the results. My MRI showed multiple bilateral lesions. Basically, there were lots of spots on both sides of my brain. Looks like multiple sclerosis… The next step was a spinal tap to confirm the diagnosis and in the meantime, I was to get started on a stronger does of steroids called Solu Medrol which is administered through an IV. My neurologist also ordered a wheelchair for me because walking was just too difficult and dangerous at this point, so it was time for me to suck up my pride, something I had far too much of.
I was a little nervous about this spinal tap procedure because I thought it would be a brilliant idea to watch the procedure being done online before I had mine. For those of you who don’t don’t, a spinal tap is where they stick a giant needle into your spine to extract spinal fluid. However, it honestly was not that bad. The local anesthetics actually hurt worse than the spinal tap itself. It was not pleasant, but it was not as bad as everyone made it out to be.
Now that the spinal tap was done I got to start my steroid treatment the next day. The plan was to hook me up to an IV and pump me up with steroids which were supposed to help clear my lesions (I’ll explain this further below) and hopefully most my symptoms. Obviously I was eager to start.
This is where the number one question arose, how long until the steroids worked? I could not get a straight answer from anyone… I was told for some people, improvements are noticed after about the third infusion. For others it can take up to two months for symptoms to clear up. So I had between 3 days to 2 months before I would possibly start seeing some improvements.
In my case, I did not see any immediate effects and when I did start seeing progress it was nothing drastic. Every day I would awake hoping that I would jump out of bed and be magically cured. This was not the case, instead, my progress was very gradual… I would compare the rate of my “recovery” to the rate at which my hair grows. I know that technically everyday my hair has grown but how much I couldn’t tell you. After a month or so however, it is much more clear that I have gained a couple of inches. This was how my “recovery” was, I couldn’t tell any difference on a daily basis, but after a long period of time I could look back and see settle changes.
Anyways, back to my IV treatment: I was to be on a steroid IV drip for five days at two hours a day. I was almost done with my treatment, but some new symptoms slowly arose, some weird ones including… Severe hiccups… As funny as it sounds, I could not stop hiccuping for about three days. I would hiccup about every three seconds for hours at a time. This was annoying, frustrating, and flat out ridiculous! I tried every home remedy imaginable, and nothing helped.
My Diagnosis: Multiple Sclerosis (MS)
Halfway into my Solu Medrol treatment I received a call during the middle of one of my infusions. My Spinal tap results were in and I did in fact have Multiple Sclerosis. Wow, not sure what to say but “OK”.
So now to answer the question of all questions: What is Multiple Sclerosis? Briefly put, MS is an autoimmune disease that attacks the central nervous system. So basically my immune system is attacking my brain and the nerves in my spine. It destroys the protective covering of my nerves known as “myelin” which acts as an insulation much like electrical wires need insulation to function properly. These damaged myelin spots are what come up as “lesions” on an MRI and are the cause of all MS symptoms.
At this time there is no cure for Multiple Sclerosis. There are FOUR TYPES of MS and at the moment it looks like I have what is known as Relapsing/Remitting Multiple Sclerosis (RRMS) which is the most commonly diagnosed form of MS. People with RRMS experience periods of relapses known as “exacerbations” and then periods of remission where most symptoms subside for some time.
CLICK HERE to read a much more in-depth article explaining what Multiple Sclerosis is.
Let’s Wrap This Up
PhotobucketSo yeah, anyways, the other symptom I started noticing during my IV treatment was blurred vision… Vision loss is typically one of the first symptoms people experience when diagnosed with MS but for me it wanted to save the best for last… As it was, all I could do all day was lay around and watch TV. Now I couldn’t even do that. I spent most my time laying down and listening to TV, preferably the History Channel or the Discovery Channel so I could at least learn something while I laid there like a vegetable with ears.

(The circles represent each of my eye balls, anywhere shaded black is where I was blind, the darker the black the more blind that spot was.)

It was now off to an optometrist to get glasses. They helped a little bit at first but by the next day my vision had further deteriorated so the glasses no longer worked as well as they had the first day. A little less than a week later I visited my uncle who is an optometrist. He looked me over and did a more in-depth examination to find that my eyes and optic nerves were in good health but after taking a detailed peripheral vision test we learned that the left side of each of my eyes were blind. So, it looked like the problem was in my brain where the signal from the optic nerve is interpreted. Glasses may have helped the fuzziness a bit but ultimately I was waiting on my lesions to clear before I could expect to see any progress with my blind spots.

I finally finished my IV treatment and my hiccups finally went away. It was now a waiting game of laying around half numb, half paralyzed, and half blind hoping to recover soon. I was given more Prednisone (oral steroids) to slowly taper me off of the Solu Medrol (IV steroids) and soon after that I chose my “disease modifying medication” Copaxone. Copaxone is a subcutaneous shot that I have to give myself everyday in hopes of prolonging my periods of remission and reducing the amount of relapses I will have throughout my life.
After a few months I finally reached a point where I could declare myself to be in remission! I was once again going on hikes, camping trips, and even motorcycle riding! I was as happy as I could ever be with a newfound respect for my body! This unfortunately only lasted about a month before I relapsed again. My second exacerbation (relapse) has not been nearly as bad but it has definitely slowed me down a bit… This is where I leave off because this next chapter of my journey with MS has not yet been written.
I have high hopes for my future regarding my good health so I remain as positive as I can! Keep an eye on my Progress Updates to see how I am doing!

40 Responses to My Story: As of January 2011

  1. archana says:

    i had read your story,it was quiet interesting and horrible also…………….but inspired me a lots ,though i am a physiotherapist i never mat with such a brave patient,hope you will recover soon………….GOD is here to see us……..

  2. I love your story. Remission is a wonderful thang. I will watch your Progress Updates and hope for the best. Thank u for sharing.

  3. Matt – I found your story while doing some research for my husband. He will be 25 this month, and was diagnosed with MS about a year ago. His first "attack" was a little different from yours. One day, we were doing some housework, later that afternoon, his mouth drooped on one side, he was dizzy, and told me he felt drunk. His speech was slurred as well, I was sure he was having a stroke. I rushed him to the ER, and they first started mentioning brain tumors. After the MRI, they rushed him for a spinal tap. This was about 2 days after the first symptoms appeared, by this time, he was completely paralyzed on the left side. Couldn't walk, wiggle his toes, hand, smile. After a failed spinal, they tried again and was able to retrieve enough fluid for testing. His spinal took about 7 hours the second time. You're lucky to have had an easy experience! I work for radiologists, so as soon as they wheeled him back to the room, I ran down to see what the hell was going on. Following his diagnosis of MS, his recovery sounds a lot like yours. Every day, we hoped and prayed for some sort of sign that he would be able to move again. About 2 months later, he called to tell me he could move his big toe! Imagine the excitement! Now, a year later, we're heading to get an MRI again, his symptoms now are showing signs of lesions on the brain stem. We're in fear all over again, but, I'm sure we'll get through it. I appreciate and admire your courage. I know what you're dealing with. Stay strong my friend, keep pushing through!

  4. Matt Allen G says:

    Thanks for the message and story, glad you found my blog. Dont hesitate to add me on Facebook if you and your husband have one. I have a private facebook group just for MS'ers that a lot of people find very helpful.

    But wow, sound like a miserable onset. Hope he continues to get better!

    Keep on keepin' on!

  5. Duano says:

    Hi Matt,
    Thanks for posting all of this. It not only has helped me but it has helped validate/explain to my family, in some cases almost word for word, my descriptions of what has been happening to me. I had my spinal tap 3 weeks ago, and as of a week ago, I have been given the diagnosis of MS. I'm terrified, but also relieved in some sense. I have had these problems for almost 3 years, and now I finally know what is going on. Thanks again!

  6. Matt Allen G says:

    Og course, that's my goal here, well, one of em. You can add me on facebook if you have one and join my MS group, LOTS of people of all ages from all over the world who are all very nice and helpful! Wouldn't have found my last doctor and latest treatment without em!

  7. Victoria says:

    hey matt it's ur cousin hope u keep pushing through had fun when we were in Cali

  8. Matt Allen G says:

    Hey Victoria! glad you had fun! Maybe next time we will visit you! HAHA! thanks for posting on my blog!

  9. Victoria says:

    Hey Matt, do u have an email? I would like 2 email u from time to time if that's all right.

  10. Jill says:

    Heya Matt!
    I want to thank you for the laughs your wry humor gave me and to let you know that the public service your blog does is impressive.
    I was diagnosed in 1999 (at about your age) and with a voracious attack similar in scope to yours; your wit and dedication to being self-informed will most certainly set you free!
    All my best to you and this bittersweet journey your body has taken you on. It's a hell of a ride!
    -jill

    ps Sorry about the hiccups. Of all the irritating things to put up with!

  11. Matt Allen G says:

    Haha glad you got a laugh! Man I need to update this already! :^b Thanks again!

    PS – Oh yeah, the hiccups were horrible! Have had that one more time since then :^O

  12. Anonymous says:

    Hi Matt!
    My cousin in Vietnam has also MS. I like your story and recognized that you are an energetic man
    I dont know how to say but ALWAYS TRY THE BEST and THINK POSITIVE!
    Nhien.

  13. Matt Allen G says:

    Thank you! I know someone in Vietnam with MS as well, I know how tough it is over there. Wishing the best!

  14. Anonymous says:

    Hi Matt,
    My name is Stephen, from Melbourne, Australia. I'm 43 and was diagnosed with MS three weeks ago. From reading your blog, although I haven't experienced symptoms as severe as yours, you have inspired me to write you. I am still waiting for my medication to arrive, I am being supplied compassionate treatment (compassionate, WTF?) and it should arrive some time next week. I would love to add you as friend on facebook, if you don't mind, as I am still coming to terms with thing.
    Thanks again
    Stephen

  15. Matt Allen G says:

    Hi Stephen, sorry to hear about your health. Please do add me! Ill add you to my private MS group that you can check out if you would like, many people find it very helpful!

  16. Anonymous says:

    Hi Matt,
    Thanks for your quick response WOW! I really wasn't expecting to hear from you so quickly. Anyway, I tried to do a search on facebook for you, came up with about 10 Matt Allen's, don't think any are you. Am I typing in the right name? Sorry I am a bit of a novice on facebook.
    Cheers
    Stephen

  17. Matt Allen G says:

    Haha yeah I am always online unless I feel REALLY crappy. Just click the facebook logo next to my pix here on the blog and it will take you to my page!

  18. Anonymous says:

    Thanks for sharing your story. I was just diagnosed 1 week ago. My friend added me to the fb group & it's one of my favorites to read. It's so nice to read that I'm not the only one out there with these terrible symptoms, especially when I was completely healthy before. I couldn't sleep tonight, found your story. I'll add you as a friend on FB. Take care….I look forward to reading more updates.

    Jennifer

  19. Matt Allen G says:

    Lol glad you fiind all this helpful. I think I saw you friend request lol should have checked this first haha!

  20. Aimee says:

    Matt- Are you on a DMD? My 15 yr old daughter was dx in September after optic nueritis. I am going to send her a link to your site, it might help her understand what's going on with her.

  21. Matt Allen G says:

    Right now, no, waiting to see my new doctor with my new insurance to see about trying the new oral medication.

    Wow 15, Im sorry to hear. I just added a 15 year old to my support group on facebook maybe a month ago. Send her my way for sure, it could help and if she wants to join my support group that may help a lot as well, it's good to talk to other with the same issues plus I can introduce her to another girl her age who was just diagnosed.

    Keep in touch!

  22. Whitney Ross says:

    Definitely check out Dr. Terry Wahls and her book. She used nutrition and life style to reverse her secondary progressive MS and got out of her wheelchair. I used the same diet to get rid of all my symptoms 2 years ago.

  23. Matt Allen G says:

    Ill look it up! I think diet can do amazing things!

  24. CnsmrRep says:

    Hi Matt:

    Several comments. For one, the "audience" that you aren't reaching here is so much bigger than the one that you are reaching. Please go to LinkedIn.com, start up an account, and get your message out to the world that way. Second, the message about the significance of MS has to be told and needs to be heard. Unfortunately, MS is going up against all of the other disability areas in terms of research funding, etc.

    Re. the ADA, if I can be of any assistance, please let me know.

    Mitchell

  25. Heidi says:

    Good Morning Matt! Thank you for sharing your story, you wrote it just like I "felt it". It sounded alot like my story, only I got diagnosed quicker than you. It was sad to hear how long it took them to put it all together and get you diagnosed. My lesions are mostly on my spinal cord, it sure was a surprise because I kept thinking sciatica and pinched nerve, too! Who would've thought MS? not me! I have been diagnosed one year now, and I'm finally doing better on medication, doing water aerobics, and go to our MS Support Group here in Reno. I was really glad to read your story, and see how your living a great life, and your photography is wonderful; you are really a talented guy! Have a great day! Heidi

  26. Matt Allen G says:

    @CnsmrRep – I thought that website was just for businesses? I'll have to look into it. But yes, it's sad that so many people have MS yet so many people don't know what it is. If you can't do something or can't work or simply need to rest because of your MS people kind of look down on you but if it was because of "cancer" no one would even question you for a split second because everyone knows about cancer!

  27. Matt Allen G says:

    @Heldi – Diagnosed faster then me?? I was Diagnosed within a month of my first symptoms, how fast were you diagnosed?

  28. Heidi says:

    Wow, when I read your story it seemed longer than that, sorry about that…for me it was from 11/22 to 12/28 last year to know it was MS. So you did find out quicker than me! That's good!

  29. Matt Allen G says:

    Barely! About the same, one month haha, crazy!

  30. pasha says:

    good luck to you matt. your maturity at your age and willingness to shhare your experience with an ailment thats so horrible is admirable. one day sitting in union square park, an older columbian man who used to work for the UN said to me "In america people have to be ashamed of being sick". i never looked at it that way and in many ways/places i agree. i'm glad you stand against it and hope that new dx'd ppl find your blog. -pasha (paulgeller@gmail.com email me if you dont mind me asking you some questions) hope curiosity isnt rude.

  31. Matt Allen G says:

    Curiosity is not rude, it's human nature so why fight it? It's a desire for knowledge which is what I am promoting! Ill email you!

  32. Anonymous says:

    Hi Matt,
    I just read the beginning of your story. It must have been
    very frightening for you. I was told I had sciatica too.
    I was around your age at the time.
    bye for now, Michelle from Montreal.

  33. Matt Allen G says:

    I can honestly say I was not "scared", I was a bit freaked out but mostly just amazed at how I was falling apart, I know it sounds weird but, I found it kind of interesting to be honest haha!

    Anyways, nice to meet you! Ill talk to you later!

  34. Hi Matt, I think I have unknowingly had M.S. for about 17 years….and still the doctors drag their feet in making a diagnosis. I had my first weird sudden-onset right hip sciatic episode was in 1999. I was only 39 then but had to use my grandmother's extra walker as even touching my foot to the floor made me pass out with the pain. Had it again this january 2012 along with the blurred vision and trouble swallowing. Just had another unprovoked episode three days ago when i woke up. Used a massage gift certificate my son had given me…it helped. I will continue on a second comment due to length, ok?

  35. I am really disgusted with mainstream medicine. They are happy to keep us in the dark and pretend there is no known cause for M.S., but that is just their way to justify making us their customers for life. I am sick of hearing them offer to "monitor our progress" and "manage our symptoms" with expensive diagnostic tests and side effect-laden drugs. Do yourself a favor and get your mercury fillings safely removed (by a special dentist) and detox from the stored mercury in you body with the help of a good "alternative doctor" perhaps connected with D.A.M.S. i had great results recovering from nearly all my M.S. symptoms (and i seemed to have them ALL) by taking zeolite drops several times a day. Whenever i stopped…that's when i got my wierd sciatic and other symptoms back suddenly. I am back on a seolite, plus taking a few well-chosen supplements like B12, Magnesium, iodine, vit. D3 and vit C plus flax seed oil and fish oil. Got to repair that myelin to get my brain working again. Good luck to you. Please do research Hep B vaccine and mercury toxicity complicity in M.S. and other autoimmune and neurological disorders. The doctors will play dumb or deny it, but the research is there. Other countries have BANNED several vaccines and BANNED mercury dental materials, but not the criminals in the US government, FDA, AMA, ADA, and health department. Heck no, drug and vaccine companies are their best buddies. Protect yourself from further damage, ok? Thanks for your insightful post. Don't ever believe there isn't a cause or a cure for M.S. Google search "compare multiple sclerosis and mercury poisoning" as they have the same symptoms (so does autism and many of the other labels docs give for neurological diseases). Also look at the msgtruth website to see how mercury and glutamates affect you. Also, realize that mainstream medicine is suppressing research that links the Hepatitis B vaccine with triggering M.S. within 3-4 years…that's what happened to me when i was a school nurse. The toxic fillings did the rest, and antibiotics slow your ability to excrete mercury. I have ALL not some of the symptoms of M.S., yet i can't get a diagnosis unless i go broke doing all the expensive diagnositc tests. Shameful.

  36. I have found that not many MS info websites ever give a true picture of the myriad of organs and systems affected by multiple sclerosis. People have a very narrow stereotype of M.S…and so do many doctors. Can you believe that some even tell us there is no pain with M.S.?!!! Here's some of my symptoms (I am sure to leave something out): Fine tremors, weakness, visual blurring especially in hot weather or when fatigued or on the computer much. Fibromyalgia especially in neck, scapula, shoulders, pain in wrist, elbow, and shoulder (and no doctor is wasn't carpal tunnel, tennis elbow or frozen shoulder and PT didn't help). Tinnitis, pain in skull and jaw, vertigo that never goes away, migraines 24/7, "eyeball headaches" (optic neuritis), tripping on pets and small children (loss of peripheral and lower visual fields, opaque clouding of vision some days, loss of pink tint color vision in one eye, one eye turns in and crates double vision, buckling knee/weakness (falling even with a child in my arms!), excruciating pain in feet, crushing fatigue both mental and physical (worse in heat), legs feel like heavy logs and every cell feels like it lacks oxygen and hurts with even minor exertion, I get flu-like sickness whenever i try to exercise like a normal person, shooting pains anywhere, twitches in eye lids, face, and even ear drum, developed a lisp ("L's"), trouble swallowing and choke easily on food and drink, "forget" how to swallow my own spit,loss of face recognition, get loss of words mid-sentence, short=term memory loss, reduced intellect, auditory processing problems, hate crowd noise, can't hear speech in background noise, imbalance especially in the dark or in wide open spaces, shattering teeth, endocrine and adrenal and thyroid deficiencies, vitamin and mineral deficiencies, digestive problems, and more… I hate the brain problems the most. I used to have so much inflammation of my brain that I could temporarily improve my vision, balance, and alterness by pressing my skull between my hands. Vaccines can cause M.S. In the lab they can produce the animal version of it using vaccine adjuvants and certain vaccines…they call it EAE "experimental allergic encephlomyelitis" …and yet doctors claim they "don't know what causes M.S. !!! Liars. Any way. Everyone please spread the word to everyone you know. Even cancer and diabetes and heart disease is caused by MERCURY TOXICITY (even in small chronic exposures. My Dad died of a massive heart attack at age 68….he had all the same symptoms as I did only left sided, but he got the label…"Parkinson's. They refused to do mercury testing at the autopsy, butwe found his Florida doctor's records recently that revealed he had been told he had heavy metal poisoning and needed to get his metal fillings and gold crowns removed pronto and tehn do chelation….sadly the NEW YORK doctors never did a thing about this and he died a week and a half after i had my fillings removed to save my life. I am sure he knew he was a goner when he saw my symptoms overcoming me so quickly. Everyone needs to take this real seriously. Don;t let them give your kids vaccines and metal fillings and stay away from pesticides, antibiotics, and food additives like aspartame and MSG (hides under about 30 names!) as they all do similar damage to brain and other organs via neurotoxicity.

  37. mkk59 says:

    Hi Matt! I just came across this doing research about the connection between MS and Sciatica…. something that has plagued me the last few days. Thanks for being so open with your story!

  38. OH NO! Sciatica was horrible! Good luck!

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