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scared of what's to come

Hey everyone,

I’m new here but not new to possible MS symptoms. I’m 31 but for the last 2-3 years I’ve been experiencing what I think are MS symptoms. back at the end of 2015 I started having this odd feeling of dizziness sort of like i was swaying or for a couple of seconds the feeling like falling backwards if i was sitting in a chair, my head would feel heavy too, these would come and go and I was terrified. It wasn’t aggravated by head movement or eye movements, I went to my go and ENT everything ok with my ears, my GP chalked it up to vitamin d deficiency and gave me some tablets. I continue to have those feelings up until this day except they dont come as often or as strong.

Last year, in January i started having this painful episodes of upper and chest pain, like being constricted, a bit of random tingling over one of my shoulder blades but i work all day in a computer so I thought it was my posture, after a while this dissapeared. Back in august of last year, i woke up one day after heavy, heavy exercise with the left side (waist down) completely numb. I had complete use of the leg but the feeling was just not there, sensations were altered, lots of burning etc. I went to the ER where they did an mri thinking it was a herniated disc and told me my discs were okay, they have me a short package of 6 days oral steroids to take, after having the numbness for about 12 days it went away just as mysteriously as it came. after that I was completely back to normal but then 2018 came. In february I woke up one day with both my legs and feet having weird sensations everything from odd burning, feeling like there were wet spots, random tingling in patches all over my legs, even butt and genitals. This would mostly be aggravated after walking i also had a lot of lower back pain so i thought it was related. I also experienced a slight numbness but not fully just the skin feels different and some times tight. this has been happening ever since but it has gotten better, the episodes dont happen as often, it is greatly reduced and its nowhere as consistent as it was before. my right hand also developed some more pronounced numbness and i get the same tingling and odd sensations in that arm since then BUT i had an mri of my neck and i do have three herniated discs slighlty pusing on the spinal cord. Ive also noticed some of this weird tingling in my stomach and back area. All this time ive walked without issues and (knock on wood) no weakness in either hand or legs. Recently i have been getting pain in my right eye socket and my eye feels tired (ive had this symptom before about two years ago) all this time there has been something telling me there may be something else going on and my gp has finally agreed.

She is sending me for a brain MRI this tuesday and my first neuro appointment is on the 10th of october and Im really scared. Part of me will be relieved to get a diagnosis as i have terrible anxiety and i think is better to know than not to but what terrifies me is what is to come if its ms, since most of my symptoms are related to the sensations in my body I am worried I will lose my ability to walk and this makes me terrified. I know MS affects everyone different but do most people that experience numbness in legs, altered sensations etc mean they will be physically disabled? I am so scared. this has been an extremely stressful year for me as I separated from my husband (divorce to come), lost my dog, changed jobs and Im for the first time facing life by my own.

sorry for the long post, this is the first time i’ve shared my story. thanks in advanced to those who read and reply

Thanks for sharing, I’m in similar place to you, unusual symptoms etc, been seeing neuro, awaiting whatever… It is scary, but its good you have an appointment soon. May be good write down questions you have, take someone with you as in the short time you have its difficult take it all in, mind can go blank, and another pair ears always helps to discuss after. If this your first neuro visit i expect there will be physical exam as well as talking about yr symptoms and MRI. Usually there can be a bit of a wait while they rule out other things, called limbo land to those who have to wait. Write down your symptoms in short diary like form to give to him, that will help him get full picture. You may not get a diagnosis straight away, it’s difficult to diagnose Ms in some people, so you may have to wait for test results and to see Neuro again. Be brave, there’s plenty support on here and seeing how others have got thru will help you. Not got all the answers but keep coming back on here, let us know how it goes. Jules

hi liz

jules has just said everything that i would have said.

you are in the system now which should lead to answers one way or the other.

have you had your vit D and B12 checked because a deficiency in these can give symptoms like you described.

a nice easy fix for that one.

good luck, be strong

carole x

Thank you both! I had blood tests last year and those vitamins appeared within normal range, I guess I will have more answers soon one way or the other and take it from there

Hi Liz

I’m not going to repeat everything Jules has either. Spot on post Jules.

In terms of does everyone with MS end up physically disabled, by no means.

If you were to be diagnosed, it’s likely that you’d be able to take drugs to minimise future relapses. So you’d be less likely to be disabled.

Life, science and MS, have moved on rapidly in the last 15 or so years. And the science is continually improving treatments. Not fast enough for some of us who’ve had MS for over 20 years, but for the newly diagnosed today, the chances are they will have a good able bodied life regardless of MS.

So worry less about MS. No one knows what will happen to them in the future. You may not be diagnosed with MS, but in 5 years time have something else wrong. We can’t all spend our lives worrying about the future. Live for now.

Sue