Should I get tested for MS?

[5789234]

Hi there! I'm relatively new to the forums, and I was just wondering what those who have the issue in question thought and I was wondering if we could kind of compare experiences!

I've had life-long issues that have steadily worsened over time, one system or organ at a time. I developed severe mental health issues with mood swings and emotional and cognitive dysfunction as well as physical issues that have gotten worse and better over time (but mostly stayed worse) starting when I was really young (around 8 years old after a head injury) and the pattern seems to be a sudden worsening of symptoms, before they back off and become slightly easier for a while before getting worse again.

I developed thyroid issues when I was young and flip-flopped from hypo to hyper. We didn't discover this until I was 12 or 14, and by then -- my issues were so severe and out of control, I was told they didn't know how I was still alive. They started me on an incredibly high dose of thyroid suppressant which my thyroid didn't respond to before recommending the radioactive iodine treatment. This frightened me, and I declined. Several years later, when I was 19 or 20, I got tested again and my numbers were even worse (heartrate of 130 resting) -- they started me on the highest dose of thyroid suppressant, beta-blocker, and iodine you're allowed to be on before rushing me in for surgery. Since then, I've been kept on a rather low dose of 88 mcg that feels TOO low -- as I've maintained my exhaustion, muscle weakness, weight gain, hair loss, and other issues synonymous with low thyroid. My endocrinologist has tested my numbers, however, and tells me they’re all fine and outright refuses to raise my dose. I’ve spoken to several, and they all say the same thing.

I was also in several minor (and one sorta major) car accidents. 4 or 5, I honestly don't remember. Most were just extremely jarring fender-benders, but one car slammed into me and flipped himself over -- I was in severe pain for quite a while and ended up with nasty nerve damage all throughout my body, but especially in my arms and legs.

Over the years I've had an MRI (though this was a while ago) and nerve testing done, I've also been tested for RA, Fibro and Lupus. I was apparently negative for everything but the nerve damage (some of which was present even before the accidents), but never told about MS or recommended to see a Neurologist. Doctors really seem to have completely given up on figuring out what’s wrong.

My symptoms are as follows:
-Fatigue that's worse in heat, and sometimes gets so bad I can barely get out of bed
-Weakness and pain in my muscles and joints (pretty much everywhere) that's worse in heat (I use a wheelchair [but find it difficult to push myself] when out and about as my legs will sometimes just stop working and collapse out from under me, on top of the pain and weakness)
-Patchy numbness and tingling that sort of pops up just about anywhere and can stick around for a while
-An inability to build and maintain any sort of reasonable muscle mass, but my father shares this issue with me
-Inflammatory-LIKE issues, but I tested very low for actual inflammation
-Some sort of auto-immune disorder that isn't Lupus
-Sudden, intense mood swings that have no relation to my actual mood or what's going on (some of which have ridiculously minor triggers)
-Rather severe anxiety that's almost physically painful
-Issues concentrating and forgetting things, getting distracted (though to be fair, at times I also get hyperfocused and zone out on one singular thing for hours at a time)
-Especially lately, and especially since it started getting hotter, I've been having an increasing number of jerks, spasms and twitches that aren't painful and don't last long, but can be quite sudden and/or violent

The list goes on, but you get the jist. Every time I bring up MS to someone now, I get talked out of being tested by being told I basically couldn't possibly have it. This may be true, but I'm now turning 23 in 2 days and I still feel like I have no idea what's really wrong with me. Any ideas?

[supermum_ms]

Hi and welcome,

I genuinely do not believe what you've experienced and are still dealing with is likely to have anything to do with a neurological condition like MS, what you've described is more likely associated with growing up with a pediatric thyroid condition.

Some of the symptoms you've mentioned are not primarily associated with MS but the symptoms that 'could be' associated with a neurological condition, they are basically red flag pointing away from MS because they are all over, random, in all peripheral limbs (arms and legs) which isn't something that MS can do because MS symptoms are caused by brain and or spinal cord lesions, so they don't produce symptoms to be all over etc

If you have experienced neurological issues since the last car accident, then it's just more likely the nerve related symptoms are from a structural issue eg disc dislocation, sciatic nerve impingement etc....already being involved in 4-5 car accidents in your short life is excessive but it only takes one to cause structural spinal issues.

There is also the 'possibility' that your mental health issues, thyroid issues or medications are involved in altering your brains perceptions/interpretation and your dealing with something like complex regional pain syndrome (CRPS) which you could talk to your doctor about...

Hope that helps.........JJ

[5789234]

Thank you for taking the time to read through everything!

Only the one car accident was really all that bad, and I've been told that the damage is supposed to heal itself over time and it's been a few years -- so I thought, perhaps, it wasn't just related to those. I've seen a physical therapist and chiropractor as well as a somatic therapist for physical trauma and so far nothing really seems to have helped.

I've never heard of CRPS, I'll be sure to ask about it. I really just want to know what's going on, even if I'm wrong!