myelinstories

[myelinstories]

8th Act: Doubts

I had been living normally, per se. No relapses, all going smooth. Now for a few weeks already I have a whole lot of questions. My eyes were weird for a couple of days but it went away, my leg seems weaker than before, especially during sports, my balance is also not great and the fog / clumsiness also got worse. That and the new symptom were my left hand loses motion, strength and flexibility after some effort or…like the leg on walking…after some typing. This not to mention the electric shocks I get every single second in my leg... Horrible feeling.

Asked my neurologist about it: “all lights are green” he says, “there is absolutely nothing that makes me believe that you MS isn’t stable”. Yet…I feel it. I feel coordination going berserk, I know my hand in not the same, I know my leg walks less than before. Guess what, no relapse, nothing, no MRI evolution, N O T H I N G.  Now what about an MRI to the spine, I am sure something would be found. As for my neurologist that should only be done is something calls for it…in the brain. For fu#& sake someone explain to me how this MS works…doesn’t make sense that everything seems to be OK and yet I see evolution…progression. This issue with my hand was not here, my leg is not the same and all of those probably come from the spine. So the big question mark came:

Is this going towards Secondary Progressive MS? Neurologist doesn’t even want to hear about it, I am a “model patient” and yet…well, read above. Diagnosis of SPMS is dubious, not easy to do and fairly adhoc. MRI does not help for example, they only know relapses are not frequent which, again, is my case.

Had to write this one, maybe make it short as my left fucking hand (fingers) is starting to bug me. So short is is…hope I am wrong, hope this goes away. Though it rarely does. Ohh (oh oh…) Happy New Year.

[myelinstories]

7th Act: Winnings

Hey you… Yeah you. It has been a relatively calm year right? Meaning, MS didn’t strike (hard…) and apart from you hypo stuff, you actually feel pretty good.

“But the leg…”

“But the vision…”

“But the cognition…”

Hey you? YOU! You are doing good, stop the nonsense.

Obviously talking to myself wasn’t enough to change my poluted mind but I do believe I am feeling pretty good. So this leads me to the purpose of this post. 

That time of the year came. Control time, checkup time, MRI time. I started freaking out a month before (claustrophobic remember?). How did this show? Legs were numb. vision blurred, hands sleepy, feet sleepy, every single thing I could feel related to my MS I felt during this month. Focus on the week prior to the MRI. I tried everything to relax, nothing seemed to help. Even took some calming pills that also didn’t work. MRI day came, legs shaky, sad stressed face like if I was going to a slaughterhouse. Wife next to me trying to calm me down. 1 hour prior to MRI I took the magic pills…felt nothing. Ding Dong, my name on the speaker and 2 very sweet nurses helped me in…almost. They could see I was extremely stressed and they naturally tried to calm me down. Nothing was working. In a very concious attitude I knew  deep inside thatI had to do the MRI but nothing (I mean nothing...) seemed to allow me to get into the machine. Bla bla long story short…I did it anyways! Hurray! How? That;s the funny part. They allowed my wife to be with me in the MRI room, holding my hand, like a little baby...! I remember thinking “if she is holding my hand I probably am not as deep inside as I thought…”. Almost 30 minutes. Done! I was so happy. My wife was so happy.

The wait. The wait for the results. It actually went pretty well, I wasn’t stressing out until the very moment I came into the neuro’s office. Some casual talk, MRI on the computer screen and off we go. Wife holding my hand waiting.

Neurologist: “This lesion was already there since day 1.”

Neurologist: “This one too..”

Neurologist: “Nothing new here, let’s flip it…”

Neurologist: “No, no…”

Bottom line, it is STABLE, NO NEW LESIONS for the second year in a row. Ohhh yeahhh!! 

Mental 30%, Tecfidera 25%, Sports, 25%, Food 10%, Luck 10%. 

It. Is. Working! Happy, yet again! I don’t feel like writing anymore but I will come back to a topic shortly: Mindfulness and the nurse who talked me into it.

For now these are reassuring times! MS is here, MS doesn’t sleep but I am fighting and these little victories feel like gold in the Olympics! Happy… :)

[myelinstories]

6th Act: Teaming

Remember how I said that my neurologist was good? How he helped me stand up and get in the head that I must fight this? Well, he left. To the pharmaceutical industry. I understand, I have to understand ($$$...not judging) and I have to thank him for all the good and challenging times he delivered me but damn I was worried when I found out he was leaving. Long story short I wrote him a small note thanking him and wishing him luck on whatever task he had linked to MS. A new one replaced him, younger guy, not much experience, doesn’t talk much, still trying to find his space. I kept the hospital I am having a follow up with and therefore this new doctor. Cannot say he is awesome but let’s give him a chance, right? Kind of…

On some searches on MS my wife found this physiotherapist dedicated to neurological issues, a very good one apparently. I went to see her. Ohh it felt good to talk to someone who actually understands the walking problems I have and the best of it was that not only she is teaching me how to strengthen the muscles I avoid using due to MS but also gave me the name of a Multiple Sclerosis center in the country I live in. I booked an appointment, a mix of excitement to  see a full team of nurse, two neurologists and a doctor in rehabilitation, and apprehension on what I was going to learn.  The day itself came and, as usual on a first appointment, I went with my wife. My first words once I got into the building were “I want to get out of here, I am going to leave”. I repeated this 3 times between the entry and the 2 reception desks. Why? There were more than 10 people, men and women, just wandering around the place in wheelchairs. People who had MS. People like me. The reality check, the confrontation was so strong that my legs started shaking, my mood was abnormally low and my body wouldn’t stop sweating. The shock never went away, but eventually the nurse came asking a bunch of questions (that I had already answered…) and getting me ready for the first neurologist. From a purely “scientific” point of view she was kind of cute but heck she had very little human contact. Her questions were blunt, no smile, no body language. Spend like half an hour with her thinking that “I was really expecting something else”. It turned out that she was the assistant neurologist, kinda like a trainee. The neurologist came after. An older lady quite the opposite of the first one. Her big eyes spoke without words coming from her mouth, he body language was caring and sensitive and once she started talking…well…we talked for over an hour and a half. It was one of the best conversations I ever had on MS. It is true that her answers were sometimes evasive on some of my most daring questions but I could have stayed with her for the rest of the day. Funny remark, in one of the physical exams she asked me to push my leg forward as strong as I could while she was holding me. It ended up with her against the wall, my leg fully stretched and  she saying “Your physical condition is very good.” Small victories, right? Off I went to the rehabilitation doctor already happy with the time I had with the Neurologist. Again, fully surprised. You know that kind of people that have a strong personality, are sure of themselves and yet are always ready to greet you with a smile? That is her. She redid some body tests, gave me a lot of advices, discussed openly with me. Again someone I could spend ages talking to. Overall apart from exercises she advised me to and the guidance on foot drop she also asked me to come back and try a walking aid (!!!). Long story (very) short I didn’t take the walking aid and I will tell that story, if there will be a story to tell, in a later stage of my MS. Small remark for both the neurologist and the doctor in rehabilitation, their English was perfect :-)

Just to wrap it up, a bunch of good things have started with an apparently less good one. Former neurologist went away but in my life came a whole team of people who know so much about MS that it makes me comfortable and thankful just to know they exist. If I was getting ready for the storm on my own, I just gained some heavy weighted allies going forward. “Fight the good fight” I keep telling myself, this body I have is unique, it is mine and I will make it ready for battle as much as I can...well, me and the bunch of people around me - wife included - who seem to fight this fight as if it is their own.

[myelinstories]

5th Act: Preparing (a small note to self) I’m writing this post to let myself remember a good period, to let myself remember that when the “bad dude” comes you can also make “bad dude” go away. 

These days are good, plus it’s almost Christmas!  

My last IRM showed a stable MS after 1 year and a half of being diagnosed and after a year of medication. It’s good news I guess but then again this RRMS is like a ticking bomb, the difference to the bomb is that in MS you have no idea when, how or even if it is going to explode. Is the tickle in my hand a relapse? Is the sleeping toes a relapse? Are the electric shocks a relapse? Is the pain in my lower back a relapse? I could go on and on on how I feel pretty much every day. RRMS never stops reminding you that you have it. RRMS never stops showing you new ways to remember it is there. So I have long decided to accept it, I have decided to continue life, do my uttermost to live with the pain, the discomfort and the weakness and strive, make myself stronger.  

Once red an article of Dave Bexfield (big #MSwarrior) where he says that he prepares his body for when the relapse comes and another one from Stephanie Buxhoeveden (big #MSwarrior) where she writes a letter to herself saying “everything is going to be OK, again” after a relapse or after one of those bad days. That is what I try to do. I train, physically and mentally. I give my body the weapons I can so that he fights the “bad dude”. Even if it knocks you down, down hard… you can still get back up, again and again (just like Rocky Balboa versus Drago :-P)! You have to get back up! I sometimes wonder that if I don’t give my body time to think and I train and train and train, maybe MS will not have time to strike. I know, one thing has nothing to do with the other but being in shape, eating well, being balanced will eventually help.  

…and I let myself believe, every day, that #iConquerMS.

[myelinstories]

4th Act: Medication

So going a little back, one of my doctor’s appointment was to help me chose medication. (why on earth should I choose and not him? I have no idea what to pick.) Yeah…he presented me with the options, I had to choose for myself. Took me a month to decide. I eventually opted for Copaxone, one shot per day in the morning and that was all. What could possibly go wrong? Let me contextualize before all. My 3 options were:

- Interferon: common side effect was feeling like if you had a cold every time you take it. Was the typical RRMS medication.

- Copaxone 20mg / 40mg: pretty much no side effects (!!!!) except a bit of a rush if the injection touched a blood vessel.

- Tecfidera: can be hard to the stomach and you will get a red flush from time to time. Rather new to the market.

Now…I know Copaxone works for a lot of people, it’s a good medication but I DO NOT EVER, NEVER, EVER WANT TO SEE A COPAXONE INJECTION AGAIN IN MY LIFE (sorry for the caps). First months’ shots were fine, some bruise marks, some bumps on the muscle and skin, nothing major. Until I hit a vein or a vessel. I thought I was having a heart attack. Your entire body goes crazy, cannot breathe properly, your brain goes wild, you feel like a piece or torn paper. Horrible feeling. Called the doctor and the nurse assigned to me. Both of them told me it was normal. So I took it as “normal”. But it happened again and again, the side effects multiplied, the skin was hurt, marked, bruised permanently. I was getting tired. Luckily (not…) Copaxone 40 mg came. Only 3 shots per week. Yay, double the dose double the fun! On my second week of shots it went straight to the heart. Remember the feelings I described earlier? Well…multiply that by 2 (20mg, 40mg?). I even called SOS to come get me because I was sure I was going to die. The agony, the pain, the panic. I really cannot describe it in words. Called the doctor...

Andy: “Stop it now and come see me”.

And so I went…

Andy: “The reaction you had happens once every doctor’s career. I am sorry it happened to you. But on the other hand I warned you when I saw the skin bruises. Trust, remember?” (yeah yeah yeah...I did not listen, but... Ok, you were right.)

We moved to the next medication. Oral. Tecfidera. Twice a day! It is one of the most expensive and at the same time effective @50% medication on the market. It is a disease modifier, meaning it will not stop it (now news here…) but will slow it’s progression. As for my case first few weeks were perfect. Some flush from time to time but nothing much. Until one day it hit me. Stomach pain I didn’t imagine possible. Vomit, pain, pain, pain. Couldn’t eat but still forced myself to take the pills. God I was getting thin… Could barely move from my couch, my left foot was weaker than ever, fever, pain and more pain. Decided to stop and went to the doctor.

Andy: ”You know Hugo, a new study came out. RRMS patients that fail 2 medications will likely fail the third as well.”

(why, you might ask? It is all in your head. That and the fact that I had a gastroenteritis  when I was taking the medication, thus some of the pain and vomiting mess...)

Andy: “Let’s retry this. You want to fight MS? This is the answer!” he said pointing at a Tecfidera prescription.

I did try again. It did work, but it also left some marks. The week I spent fighting Tecfidera left me with a weaker leg and some myelin degradation happened in the process. Or so I think. I can anyways walk less than before without that foot drop feeling so I guess myelin was touched. 

Life went on after that, pretty good actually, almost forgetting about MS. 

Maybe indeed Tecfidera is somehow, for the moment, the answer.

[myelinstories]

3rd Act: Acceptance

When I say “some good came along” I don’t really mean in terms of MS. Life happened, in a positive way, despite MS.

I changed countries, left my job, left everything I didn't like or that was making me uncomfortable, behind. I joined my (at the time) girlfriend in the country she was living, I got a new Doctor dedicated only to MS and I settled. Took 2 months for myself, didn't look for a job immediately, just enjoyed life as much as I could while cooping with a relapse. yes, a relapse. The “Drunken Master” came back. Can you imagine me, home cooking for my wife, while my eyes we going berserk? Not so funny. Anyway, the appointment with this new Doctor came after some wait. First thing he does? Sends me to a 3 day 1h a day injection of cortisone! Didn't hurt, outside it didn't anyways. Inside it was a different story. I lived, “Drunken Master” retired and I was left with this Doctor. Feedback? Didn't like him, he was young, a bit cocky. Was he actually any good? Oh boy, not only he was good but he was psyco-good.

Let me sum up some of several appointments me and “Andy” had...

Andy: “You have a typical case of MS. A normal one if we can call it that way.” (humm...euhh...Thanks?) Andy: “It is likely you end up wearing a walking aid but it is also unlikely you end up wearing a walking aid.” (well that was useful...) Andy: “This is a marathon, not a 100m race.” (patience was NOT my strongest point.) Andy: “If you wear out all your energies in MS now that MS is relatively good to you, how will it be in 20 years when / if a big relapse comes?” (my awakening started here, this exact moment...) Andy: “Stop this battle against yourself, you have everything to be in remission, get your head straight.” (I have? Hope...Hope injection.) Andy: “Listen, you are in a very dangerous negative spiral, either you snap out of it or you wont make it.”

...and so I changed. I started sports, quit smoking, began eating properly, found a new job, got to meet amazing friends and accepted I had this for life. Relationship with my Doctor improved a lot, I started trusting him, he began to understand me, Hell, he actually pulled some psychotherapy “stuff” to help me cope with my MS.   Eventually things were getting together, but somewhere in here medication hit me in the face. It hit hard, very hard.

[myelinstories]

2nd Act: Changes

Remember my MS diagnosis? That was on a Friday. Neurologist’s appointment was on a Monday. My regular Doctor didn’t give me much information on the topic other than saying it was MS, it had no cure up to his knowledge and that I should not look for information online. Which I didn’t and it just made it even worst.

Recall I said I was living abroad? Well I was with my girlfriend that weekend. Thank God she as always was there to support me. She was the one calling medical contacts she had, nurses, doctors, researchers. She was the one finding out that MS was NOT Stephen Hawking’s disease (that’s Amyotrophic Lateral Sclerosis – AMS). Anyway let’s make this post more interesting  than it actually is and let me tell you about our little chat before knowing that MS and AMS are very much different. Her: “Let’s stay calm…medicine is advanced these days and I am always here for you.” Me: “Not that advanced, you heard him, no cure…”

(yeah I am a guy, if it hurts I am dying, if there is no cure I am dead already) Her: “Let’s not jump to conclusions my love.” Me: “You know me, I jump. Monday after neuro’s appointment I want us to decide what we will do once it hits me hard and at what point we take out the plug…”

(it would happen in a few days, I was sure, so better decide immediately…) Her: “What?! No, shut up, you do not know what you are saying, let me make some phone calls.” Me: ”Let’s not be in denial from the beginning… It is bad, I won’t make it but I had a good life and I love you. Plus I don’t want to be a stuck in a bed not able to do anything…”

(no tears yet because I was so so strong…)

She made those phone calls I mentioned earlier, I called my best friend living in my home country. I cried (there you go...) over the phone like there was no tomorrow - and in my head there wasn’t - and she spent a few hours understanding MS. Eventually she found out it was an auto-immune disease where, in average, people have THE SAME life span as non MSers. Even, with some adjustments and a bit of luck, I could live a “comfortable” “normal” life. Didn’t make it any better though… I spent a horrible weekend waiting for the neurologist’s appointment like if it was a wait to know what day my death sentence was to be executed! (am I dramatic…?)

Monday morning, neurologist, some light explanations on MS, another “touchy” body exam and not much more. Somehow the appointment did some good, I released all that tension and started my long journey of accepting the problem, fighting it and living a normal life with MS.

And from MS, some good came along…

[myelinstories]

1st Act: Findings 12th March 2015 @Doctor’s office. Plain. Blunt. Harsh. Direct. Yeah…I learned the hard way. So…I was 30 years old, personal life going forward at a good pace, prime of my career and living abroad. Strong character, feeling invincible…or almost. I had been ignoring the signs for quite some time, the numbness in my fingers, the foot drop after a medium distance run, the sensibility on the left part of my torso and legs. Then came one sign I could no longer ignore, The Drunken Master! We’ll get back to that. Moving on, my girlfriend, my family, my friends everybody kept saying I was an hypochondriac but now, not anymore (in your faces, humm...joke’s on me!). Deep inside I always knew something was wrong.

Let me restart and add some context. Please understand the italic bold sentences as my conscience at the time. I am funny like that…

At the age of 20 I had 2 of my left hand fingers’ fall asleep for a couple of months.

@Doctor’s office:

“Nothing to be worried! (knew it…don’t need to be a doctor to know THAT!) It comes from all those computer hours you youngsters do!” .

Then it was the sleepy foot (yeah the left one as well) which decided to hibernate for a few weeks.

@Doctor’s office:

“Honestly? No, you have nothing, all in your head! (I like this neurologist! He knows what he is saying!) Just relax, you are too stressed!”

Moved to another country and guess what? My body was so sensitive (left part againnnn!!) I could not even spray deodorant! That much, yes…

@Doctor’s office:

“Vous êtes trop nerveux, trop stressé (you don’t say…) Tenez des benzodiazepines!”

Major fatigue, could not even lift a plate straight. Slept 7 hours in a full week.

@Doctor’s office:

“You have a good life, enjoy it. (well thank you sir but…) You don’t need a psychiatrist, just relax all that stress. Take some benzodiazepines.”  

Damn my foot (left foot in case you are wondering…) seems to have lost it, can’t walk straight, doctor again like a good hypochondriac.

@Doctor’s office:

“It can be the central nervous system! (FINALLY!) But in my opinion it’s nothing, you’re too stressed. (ohh…if it’s just that.) Anyway go see a neurologist and also take these benzodiazepines to calm down.”

So I did. Went to see the good lady. Full body exam, nose touch, balance, sensitivity, feet touch (ugghhh!!) and so on and so forth.

@Doctor’s office:

“I advise you to do an MRI... (what??? That coffin like machine?) You are describing it to well…what you experience.”

But…guess what? I’m claustrophobic!!! Plus when I had my MRI appointment the nurse was so not nice that I didn’t last 5 seconds inside the machine.

@Doctor’s office: “It is the only way to find out… (find out what???) You have to take some pills to be less tense for the exam”

Here starts my deepest / saddest “head in the sand” period! I pretended it was nothing, never did the MRI and waited until the next “stressful period”, also known as… a relapse.

The eyes (you know, The Drunken Master)! Open field double MRI. Sweating like crazy, eyes closed, almost crying from the fear of being “closed”. 12th of March 2015.

@Doctor’s office:

“There is no other way to put it, you have Multiple Sclerosis. (is that the disease of Stephen Hawking?) There is no cure.”

And so my life changed...