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Falling apart with MS: ‘You’d bleed just to know you’re alive’

November was no bed of roses. After 33 years in this body, it is surreal when it stops working as experience suggests it should.

In short, the numbness and tingling became worse. It is often there, for an hour here or a day there. At a low level, one gets used to it. But when the dysaesthesia (feeling sensations that my nervous system imagines just for fun) becomes incessant, it drives me mad.

Along with the numbness and tingling comes fatigue, weakness, heat sensitivity, lack of coordination and disorientation.

The entire experience is exhausting. Exhausting.

Think about it this way. My immune system is attacking my nervous system, and my nervous system is trying to defend itself. Or to be even more blunt, one part of my body is attacking another part. Lets just say that climbing Machu Picchu with altitude sickness back in 2010 was significantly easier than walking to the park this week.

Anyway, over the last year I have developed a habit of holding or touching a numb part of my body with a functioning part… You know, just to make sure I haven’t misplaced a limb or something. It is an attempt at self-protection, but one I am going to have to improve.

Because over the last weeks I also developed a habit of scratching the exposed numb areas in an effort to actually feel something. Turns out that is not a good idea, as I scratched till I bled because I couldn’t feel it.

These aren’t severe scratches, I know. The point is I lacked the sensory functioning to realise I was hurting myself. That worries me, as one day I might touch a frypan or mishandle boiling water and cause real damage. This photo was taken three days after the incident (ah, the bliss of denial). I know many of those who know me hate photos that show I am sick, so apologies in advance. But this blog is a record of my disease… So just scroll down quickly.

The scratching incident, followed by a day where my thermostat stopped working and I could not control my own body temperature, saw me back in the neuro ward.

The ward is – against all expectations – strangely comforting. It is full of doctors and nurses who take me seriously when I say that it feels as if ice cold water is pouring down the inside of my skin. I cannot begin to explain how comforting it feels to have professionals acknowledge that I feel these things (and that I am therefore not losing my mind).

While I passed the physical, last week it was more drugs for me – the very same steroids I was pumped full of when I got on this merry-go-round last year. Three days as an outpatient given 1,000mg methyl prednisolone through an IV (what I will receive every time I have a flare up or a new episode).

It isn’t that bad, although it leaves a strange metallic taste in the mouth, as if I have been chewing on alfoil. And it makes me even more fatigued and disoriented than I was already. Highlights include being so tired I forgot how to pay for a cab, running into an arrogant man in the supermarket and being shouted at by him, and strangers thinking I was drunk at 10:30am when really I was just a bit uncoordinated.

So, what does this all mean? Aside from the fact that I am now that ‘sick person’ people talk about with a slight awkwardness.

There are only two options.

The best-case scenario is that this is a flare up of my existing lesions (likely that pesky one on my spine). If so, I stay in the PreVANZ Trial and continue on my merry way.

The decidedly not good scenario is that this is a new episode. If so, I start treatment for MS.

And the only way to determine this is via MRI. So I now have two to look forward to – a 30 minute one on my spine, and an 80 minute one on my brain.

Lucky me.

7 thoughts on “Falling apart with MS: ‘You’d bleed just to know you’re alive’

  1. Wow, you took the words out of my mouth, my Twitter friend! Im so sorry you have to endure this terrible monstrous disease! Its disgusting and we ffeel what u feel. It helps to have people who get it, the whole nasty thing and we can be one big disfunctional MS family. Im glad you wrote this; as people need insight from other peeps going through the same sicko disease as them.Peace to you jilly

  2. To our darling girl. we feel heartbroken that you have to go through this. Hopefully treatments are getting better, and managening episodes are easier. You will have good and bad days, and we will be with you . Love Mum Dad x

  3. I have no physical marks, but I can certainly relate to the scratching, rubbing, trying to make sense of the numbness and tingling. (Only mine was on my leg.) I’m not a sappy guy, but I do think about the quote in John Green’s The Fault in Our Stars: “That’s the thing about pain…it demands to be felt.” Like it has its own Looks like you and I will be on a similar MRI schedule, as mine will be before year’s end.

  4. ” I have developed a habit of holding or touching a numb part of my body with a functioning part… You know, just to make sure I haven’t misplaced a limb.” I have definitely been there. Thank you for sharing your experience, and for the record I don’t think you are losing your mind. Though I don’t know how much that qualifies as comfort or a valid opinion because I always think I am losing my mind, no matter how much people tell me I’m not. Hang in there.

  5. I was diagnosed at 33 as well, but I’d been telling Drs for almost 10 years that something was terribly wrong with me. It is nice, now that I have a diagnosis, that most Drs take me seriously. Still, I’ve even had so-called MS specialists tell me that it’s all just my imagination. Even my current neuro constantly tells me that I need to check with my psych doc on many of my symptoms. I see over half a dozen specialists, what makes him so special? :p
    You mentioned having to get IV steroids for every flare up, but there’s also Acthar (which is ACTH, adrenocorticotropic hormone). It’s naturally produced by your body, so it’s much less damaging to your system, and it doesn’t make you feel as ill as regular corticosteroids. The problem is that it’s wicked expensive, so I dunno where you’re located but here in the states I have to fight tooth and nail to get it approved by my insurance company. They approve it for my optic neuritis, but it takes friggin forever from the application to getting the stuff in my hands, so I either have to live with mind numbing eye pain for several weeks, or just go to the ER. But the stuff works much better for the optic neuritis, and for MS in proper dosages (which is basically10 injections, 1per day, rather than just 5 for the ON) than regular corticosteroids.
    I’ve certainly spent plenty of time rubbing and scratching at paresthesia induced tingly, burning and/or numb places on my skin. Do you take a prophylactic to treat the symptom? Mine has gotten considerably less insistent from starting amitriptyline. Also, meds like Neurontin (which is an anticonvulsant) work really well for all manner of nerve pain and nerve sensory issues. I first started taking such meds for sciatic pain, but have since had my dosages increased to assist with the MS symptoms. Just some ideas. There are a lot of good meds to help ease our symptoms. It’s just palliative, for the most part, but anything to make us more comfortable, I’m all for it! You can check with the Natl MS Society page to look up other meds specific to your symptoms. They’ve got a pretty comprehensive list.
    Anyway, good luck to you, my comrade in illness. :p If there’s anything you want me to write about, or just research or to share information, let me know! I’m happy to share my knowledge on all things MS and pain mgmt. 🙂

    1. Thank you. This will kick of my Internet trawling this week… I haven;t found the medications list you refer to yet 😉
      As yet, I don;t take anything for the symptoms (with the exception of the steroids after a relapse). I am hoping the Gilenya (which I will start in February) settles everything down. But if it doesn’t, I will be considering options.
      And I love your pseudonym!

      1. Thanks! I thought the pseudonym was pretty clever, and I say that both humbly and proudly, as my cognitive functioning has been steadily declining. Hehe I’m just glad I managed to come up with something memorable and apt.
        Here is the link to the NMSS page with the medlist. It’s under “Managing Symptoms”, if the link doesn’t take you straight to the meds portion (but it should). http://www.nationalmssociety.org/Treating-MS/Medications#section-3
        Gilenya is a good medication. Is it your first DMD? I’ve been on 3, currently on Tecfidera and have shown much improvement over the first two.
        You may find that you have baseline symptoms, especially some of the symptoms you’ve had for a long time may linger. Most DMDs really only help to prevent flare ups, but even many of them don’t alter rate of disease progression or help to heal existing damage. The best things you can do for yourself to prevent flares in symptoms is to sleep as much as your body tells you to, avoid heat, stress and illness/infections, and take your vit D. If they haven’t already tested your D levels, talk to them about doing so.
        Some of the most common baseline symptoms are fatigue and loss of balance. You may also experience flare ups of previously existing symptoms or any baseline symptoms, especially if you get sick or stressed, and most especially if you get a systemic infection. The most common infection amongst MS’ers are UTIs, mainly because MS can cause urinary retention. UTIs can spark pseudo-flares and even full on exacerbations pretty quickly, even if the UTI is not very severe or not yet very severe. If you’re prone to UTIs you should buy a UTI test kit at the pharmacy, or you can even get them at Dollar Tree if you have one near you (much cheaper at Dollar Tree. Why pay more? Hehe) So if you suddenly start experiencing an increase in symptoms, test that first. It could save you a trip to the ER. Heh Just a heads up because I didn’t know that when I first got sick and I did get a UTI but I was calling my neuro all frantic because my symptoms got super bad and I thought, “Oh no! It’s happening again! I don’t want to go back to the hospital! D’:” heh But then she told me what was happening and said to wait til I was done with my antibiotics and call her back if my symptoms didn’t improve. I was so relieved!
        So, you should start tracking your symptoms so you can note any improvement or increases. You can take it to your Dr to show them that you’ve got proof of a sort. Better than going in with just your word. This guy made a really awesome excel symptom tracker that’ll graph your symptoms as you enter them. Very handy. http://youtu.be/PRIAh80ZnIw
        So, I hope the links help you get started. Let me know if you need any other leads. Take care. 🙂

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