Thinking it could be Ms

New diagnosis and before diagnosis
1

Hi all.
ive been going to the dr for years now with a myriad of symptoms and have kind of just accepted that my body was a bit weird and hadn’t thought too much of it. Recently having seen a documentary on ms it was like a lightbulb went off and I went oh ok wow. I think that’s what I have. So just wanted to check with you guys if this sounds like it and how I go about getting a diagnosis as drs have been absolute crap thus far.
Symptoms I have; fatigue (literally when it hits I couldn’t get up if someone offered me £1000. Literally lie there feeling like I am about to die.
cramping and pain in legs. Every day. Spasms that wake me every night and no amount of massaging or stretching helps. Have been using magnesium spray which has helped. Restless legs
numbing and tingling in hands and top of arm

wake up in night unable to breathe. Gasping for breathe. Thought it was sleep apnea

brain fog. Have forgotten best friends names when introducing. Partner and kids take the mic cos I get my words jumbled!
extreme heat like overheating at night.
Need to urinate all the time. Literally can go for a wee, stand up flush and need to go again. Worse at night.
constipation and pain in bum, feels like stabbing.
tight pain across chest, can’t wear a bra as it hurts sometimes as feels too tight.
headaches

dizziness

slight vision problems sometimes, blurring, flashing lights, spinning

emotionally up and down.
IBS sometimes have to rush to toilet as feel I will soil myself!
heart palpitations

pain in hips and knees and back and stomach (but think I have hernia)

feel breathless sometimes

have choked on food on odd occasion as kind of gets stuck on way down.

so just wondered if anyone thinks this could be it. When I spoke to dr they said fibromyalgia but they haven’t done any tests. This has been getting progressively worse since I was about 27. Way worse since having kids. I am now 36. I’m fortunate enough that I have a widows pension and don’t have to work and don’t need any money but I just worry moving forward that things will get worse. Some days I have good energy levels and some days I can’t do hardly anything. I just want to be able to get up and get on so I get frustrated when my body sometimes says no.

anyway how do I go about getting my gp to listen to me. They keep trying to get me to do a diary of fluid intake and urination and fobbing me off in many ways and I’m sick of it. This has been going on for years and I feel like I’m banging my head against a brick wall. Not sure what tests I need to check this all out but I kind of feel in my gut like it could be ms. Like a six sense. Not sure what tests they do to confirm. Any advice would be greatly appreciated!

thanks for listening to my rant!

Tinker

2

Hi Tinker

first up your GP is correct in asking you to keep record of fluid intake and output.

I always recommend an appointment with the bladder and bowel clinic and that is the first thing they want to know. It helps them to identify the type of bladder problem you have. Mine is an overactive bladder with urine retention. I was shown how to self catheterise which i hated at first but now it is such a huge relief.

It could be MS or one of the many other illnesses with similar symptoms.

MS is difficult to diagnose and will require more patience than you ever knew you could have.

keep a diary of your symptoms and see your GP regularly.

If s/he thinks it must be neurological then a referral to a neurologist would be the next step.

even before Covid 19 it took about 12 months.

Fibromyalgia is a strong possibility so be open to other diagnoses than MS.

I understand that this may well sound stupid but try not to stress, stress just makes all symptoms worse.

Try Mindfulness Meditation (there are online courses) to help you remain calm.

keep popping back on here.

good luck

Carole x

3

Hi Tinker, it`s a pain when we feel our GPs dont take what we say as important.

But to see a neurologist, who is the one who does the tests, you need a referral from your GP.

Your symptoms show there is something going on which needs to be tested.

Getting a diagnosis of MS isnt always easy. Neuros can take quite a while to do so.

Your symptoms could be caused by a wide variety of different conditions…including fibro.

Is there another partner in the GP practice you could see?

Even going private needs a GP referral.

I saw the Continence Service for quite some time, when my bladder issues were a problem.

Boudsx