You are very articulate and I congratulate you for presenting yourself so clearly. Can you go into a bit of detail about the pain? It's such a general word. The very first question hospitals ask is "are you in pain?". If you say yes then they whack you full of something and it becomes harder to determine how you actually feel.
Understanding the discomfort is the first step to overcoming it. Masking it can make solving the problem a little harder. Sometimes, though, there may be no choice.
I did not go into depth about the pain not through lack of understanding but simply because it is quite a lengthy topic to discuss, and was not on-point with my main question. Thank you for the praise by the way, when your body shuts down you only really have your mind - the one thing I keep in good check!
Pain was the first sign that something was wrong with me, and started way back in year 7 and 8. It was, at first, hypersensitivity - that is things that would not normally cause a painful bodily reaction would, for example someone rubbing their hand against your arm, or the rain hitting your skin. Unfortunately, I was young at the time and when I presented my first symptoms to my parents they were dismissive and didn't really believe it. Eventually, after a few years and as I got older, they agreed to have me taken to the doctor and he could tell there was no way I was faking such pain. From there, it became a degenerative problem. It got worse and worse, spreading through my entire body and simply being there 24/7. To manage this, I saw a pain specialist who I still see to this day, and I take things like morphine, ketamine, tapentadol, oxy and others daily to fight back the pain. Specifically, the pain is a very sharp ache, or at times it can be like laying on a bed of nails or as if someone has lodged a screwdriver into your muscle and left it there. I have been sick for almost 9 years now - half my life - so when asked how bad pain is, that can be tricky to answer because my 5 or 6 would probably be the average persons 7 or 8 as my tolerance and ability to handle it has progressed extensively.
Coming forward in my timeline, I developed other symptoms such as muscle weakness, my vision would act as if it had a mind of its own - one day I would need glasses, the other I could see fine, sometimes it would change out of no where and there would be a dull ache sometimes when I looked around, or I would get tunnel vision out of the blue. Then the memory problems began and by this time I was already developing a gait abnormality. The iconic 'leg swing' that is so often used when someone has foot drop was something I was already using because I couldn't put all my weight onto my right leg due to weakness and pain. Thus, as I stepped I would swing my right leg and quickly shift my weight back over to my left. It was when I turned about 17/18 that I noticed the first signs of foot drop, and from there I have been watching it and now I see it the majority of the time when I am walking - if I try to flex my right toes, they simply do not, I can get a small twitch out of them sometimes but it just doesn't 'happen' which is a very odd sensation I must say.
As mentioned heat is a huge issue for me, not only do I struggle to walk and perform generally in it, but if I stand for more than a few moments in direct sunlight, or in the heat, my body develops bright red spots that look like chicken pox that cover me head to toe and they hurt. Now when I talk about my normal pain, the worst I have ever experianced would of been what I call an 8.5, and I went to hospital because of that.
The first time I experienced this...heat reaction, the pain that followed the redness was not something I even have words t describe. It was a 300 out of 10, and thus I cannot be in the sun for too long or in the heat. If I were ever forced to stand in the sun for more than 3min, I would beg for a quick death on the spot.
To give you a run down of my symptoms (that I have verified are NOT caused due to drug side effects):
- Muscle weakness, mainly in my legs but also in my arms. I may very well have muscle atrophy in my right leg.
- Memory loss.
- Problems with finding words sometimes.
- Dizziness and lightheartedness randomly, or when I stand up.
- Absolutely no balance capabilities whatsoever, today I have fallen over twice already and if asked to walk one foot in front of the other I simply cannot.
- The first stages of foot drop, as discussed.
- Problems fully emptying my bladder - after voiding I will feel that I have finished, I will zip up and as I am walking away I will then realizse I had not finished and...well, wet myself. Luckily I have learnt some...private techniques.... that I would rather not talk about to help manage it, but I can see that it has become worse - going from the occasional drip to actually voiding after I am finished.
- Severe pain in my legs (very strong aching or sharp knife like pain).
- EXTREME hypersensitivity - the clothes on my skin hurt like a bitch sometimes, or just shaking a hand can hurt.
- Sexual problems. I am unsure if this is the place to openly talk about that, I personally - being a Buddhist - do not have an issue discussing topics so personal as I am not embarrassed but I am unsure if others are comfortable reading about my sexual life and troubles, let me know in your reply and I can elaborate.
- Postural Tremors (tremors whilst a limb is being supported against gravity).
- Resting Tremors (tremors whilst the body isn't active).
- Severe depression and anxiety, though that could be due to spending half my life in pain and on horrible drugs.
- Fatigue - this has to be one of the hardest things in the world, I sleep maybe 9 hours a week and no matter how much rest I get I am never satisfied, I live in perpetual fatigue and have almost no energy - I run on will power.
- Random numbness in my leg or arm, with a strange tingling on occasion or like pins and needles.
These things have been around a while, developing as I grew. It was never a problem because they were small and out of the way, in a sense. But as I draw nearer to 20 years of age, they are becoming life-impairing.
There will be times when things suddenly get better (not the pain or weakness and walking issues, that never stops) and maybe stay like that for a few days, a week...and then I will come crashing down and I will feel like...I was in a truck that got hit by a train that then got landed on by a crashing plane that was then impacted by a meteor.
I had an MRI of my brain and spine without contrast about two years ago (17 years of age), and this was BEFORE the issues listed above became so noticeable that they impaired my quality of life. At the time I was just in pain, and had some muscle weakness. But, it was decided at the time that my doctors wanted to look into something like 'CRPS' (which I understand is a real thing, but I do not have it and present nothing like a CRPS patient or someone with Fibromyalgia) or Lyme disease etc, and when they stamped that damn CRPS possibility into my file, there was not a neurologist that was very keen to take me on.
Luckily, I have found one thanks to my uncle who has MS who he sees, and this man is a stout researcher and enjoys a challenge (which is the very definition of my medical life). He does not have a waiting list, and instead demands to have every square inch of medical history and goes over it all, along with a written explanation and referral from my GP about my symptoms before he decides to take me on or not.
I have lived within the medical world long enough to learn a thing or two, and when no one will believe you that you are sick or that you are hurting and suffering, you have to do it yourself. So in case anyone assumed that I had simply googled my symptoms, or found MS on some web-based medical search engine, then no. I understand my body, what is going on, and I also understand the drugs I take and how they work - I also understand MS, I have watched a family member slowly decay with it my entire life and in the absence of a neurologist, I have taken to medical literature to learn what I can. However, I do not self diagnose, I simply speculate with logic. We have ruled out most things that it could be, and MS is the only thing that has provided a solid
DX for all of my problems over the years.
I understand that when I last had my brain/spinal scan 2 or 3 years ago, I did not have a lesion(s) - but that does not mean you do not have MS, as lesions are not the cause of the disease they are a byproduct. Lesions can develop later on, and I am - assuming I am correct in this - in my early days yet, so they could very well develop later - and there are even cases when people do not have visible lesions.
I simply say this because I have spent my life defending my right to be sick, I have had people shoot me down all over the place, I have been bullied and belittled, I have been broken off with in relationships all because I don't look sick - doctors, friends (when I had them, most of them have left me now save for my 3 or 4 closest) and family, and because despite the fact my muscles are giving away, I am in horrible pain that makes me want to just off a building, I still walk and talk and do what I have to do every day, even filled with drugs and horrible things. I'm not attacking anyone, but this is just me stating for the record that no, I am not a hypochondriac, no I have not made this set of decisions and opinions over night, and that I am well enough educated medically to speak on what I think is going on with my body.
This is the first time I have ever had the courage to properly open up to a group of people who are experiencing similar issues as me (I am in a support group for chronic pain, but I don't talk much) and while I don't know any of you, I am taking a step of faith that I can hopefully connect with you and just find some friends who are going to take what I have to say seriously, rather than brushing it off.
Because beneath the usual calm, comical and logical exterior I like to put up - I am so, so very scared, because I can feel something is wrong and something needs to be done about it and that is why I am here, doctors are good but first I need information and I need friends.
I apologize for the long autobiography, it's overwhelming I am sure and a lot to take in but I would rather just tell you guys who I am and what has been going on so when we talk, you know all the facts and where I am coming from.
If you are all willing, I would like to talk in depth about certain problems (not just drop foot, other more personal stuff) and maybe find others who go through it as well and how they handle it - because if there is one thing I have learnt in my life, it is if I want answers and I want things done - I am going to have to do it myself and make the effort.
Thank you, for putting up with the paragraphs and whatnot! x