What doctors may not tell you when you are first diagnosed with MS

And now I understand why………..

I know that in 2005 when I was diagnosed, I had never even heard of MS but my husband’s face told me what he didn’t put into words, so I had a sense that this was a big deal and that life was going to change. I promptly went home and spent hours googling Multiple Sclerosis – which by the way I was told not to do, but is a sure fire way to get me to do something. That evening, I went so far as to tell my husband that maybe he should take the kids and leave as I didn’t want to be a burden to him and them (to which he looked at me like I had 4 heads). When reading this, please keep in mind that although we may have the same disease, my disease is almost certainly not your disease if that makes any sense.  But I now have an idea of why they don’t tell you everything and these are my thoughts: 

  1. Many symptoms are common for most people with MS, but it is also very much an individual disease. Plus they need to monitor you for some time before they figure out which type of MS you have. There are 3 main types (Relapsing Remitting which most people are diagnosed with initially, then there is Secondary Progressive and Primary Progressive). Some of the more common symptoms include fatigue, walking (gait) difficulties, numbness or tingling, spasticity, weakness, vision problems, dizziness, bladder and bowel problems, sexual problems, pain, cognitive and emotional changes, and depression – and when I look at this list, I can safely say that I have or had all of these at one point or another and many have slowly increased over time and now are with me daily.
  2. It’s a lot to process and too much info can scare the sh&% out of you, but you many never experience them at all.

If you know nothing about MS, this is the basics of the disease. Web MD defines it like this: Multiple sclerosis, or MS, happens when your immune system attacks myelin, the sheath around your nerve cells. Without this outer shell, your nerves become damaged and cause communication problems between your brain and the rest of your body. 

When first diagnosed, I (like most people) said “I’m not going to let MS control me or take over my life”, but I’m here to tell you that the reality is, it sometimes does control you, sometimes it does take over your life. Along with the usual symptoms of the disease there are a few other lesser known symptoms like the ones I struggle with:

I am itchy…..so f’ng itchy – I have a little scratcher rake thing in the living room, one in the bedroom & one in the motorhome and God help whoever plays with it and doesn’t put it back where I can access it readily.  When your nerve fibres are damaged, you tend to feel itchy even though you don’t see any obvious irritation (except for the itchiness itself, which you can’t see but you sure as heck know it’s there) and because the cause is neurological and not physical (like a bug bite or rash of some kind), nothing will take it away.

The world spins and I’m not talking about the regular earth’s rotation around the sun, I’m talking about Vertigo – which I have learned is different from dizziness. Vertigo makes you feel like everything is spinning around you.  Think of your worst hangover and times it by 10 and know that it is likely never going to end.  No amount of Pepsi and chips (that can’t be just my own old hangover cure) will get rid of this – its chronic. I get vertigo during the day, but more annoying is that I have it almost every night when I close my eyes to go to sleep, so much so that I often avoid it by waiting until I am sure that I will fall asleep almost immediately.

What did you say? I said I have some speech Issues – And although it doesn’t stop me from talking, I sometimes need to repeat myself. Some of these issues include scanning speech or scanning dysarthria, where the normal “melody” or speech pattern is altered.  Slurring, loss of speech volume and grasping for words. Many of these occur farther along in your disease or when you are fatigued. I sometimes sound like I have cotton or marbles in my mouth, even I have a hard time understanding what I said!

Not tonight, I’ve got a migraine – While headaches & / or migraines aren’t widely considered a “hallmark” symptom of Multiple Sclerosis, many people with this disease get them and I am one of the lucky ones who struggle with migraines regularly. It usually takes hours before I get the upper hand but after a hard-fought battle, I can come out victorious, but they can sure take their toll on me.

Add these to some of the standard disease symptoms that I and many others face like stabbing electrical sensations, pain, weakness, brain fog, fatigue, balance issues, heavy limbs, spasticity, pins and needles, it can sometimes feel like its an uphill battle. One day I am fully capable of a task while the next day I struggle with generally simple things like brushing my teeth, getting dressed or making dinner. And these challenges are worsening each year.

So, if I can leave a few pieces of advice to those who know people who have MS, it is:

  • Even if they “look good,” they can still feel unwell.
  • MS affects each person differently, so if Bobby Sues sister has MS and she does this, this and that, remember that Bobby Sues sisters disease is not your loved ones disease and vice versa!
  • Please don’t make someone with MS feel like they must justify their disease to you.
  • Just because you can’t see it, doesn’t mean it’s not there.
  • Each day can be a whole different ball game for people with MS, it can and often does change hourly, so if they need to change plans, understanding that can go a long way!

I am also attaching a link to a post I wrote in 2020 similar to this one but touches more on the emotional side of MS, in case you are new to my blog!  

As always, thank you so much for reading!


Things your Dr might not tell you when you are diagnosed with Multiple Sclerosis

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