Hi, Newbie here but not sure if I should be ??

New diagnosis and before diagnosis
1

Hi everyone, I’m Becca, I’ve been hovering around on the site for a little while & I’ve finally plucked up the courage to post.

I’m not sure if I should be on the site or not ? I’ve been mentioning my symptoms to people for sometime now & had a google & it always brings up MS.

Basically to start my very long story off, a couple of years ago I had a flare up of all dizziness, trembling inside & generally feeling strange. The GP always put it down to my nerves as I have suffered with anxiety attacks for many years. I took their word for it & put up with the dizzy spells for about 6-7wks then they stopped as if they had never been there ?

I had been ok (ish) up until a few months back when I was standing talking to a friend & from out of no where felt like I was going to pass out, I started shaking & feeling very weak. I put it down to not eating that well that day. This is still ongoing, I feel like i’m trembling inside as if someone has a pneumatic drill going off in me. I feel weak all the time, just doing the slightest thing & I’m out of energy, I can barely walk anywhere at the moment as my legs are so weak but so heavy. I have to go round the house on my knees if I want to do housework, etc.

I’m having problems with my vision, it’s as if I’m in a fog sometimes, not all the time though. I often feel spaced out as if I’m not really there if that makes sense ?

I’m so forgetful, I can be mid conversation & forget what i’m saying. My mouth feels strange, I say it’s often as if my tongue is too big for my mouth but at the moment I feel like something has sucked all the saliva out & my mouth is bone dry & I can hardly open it.

I’ve been having strange twitches, mainly my head & my left thub/hand, I said I feel like a nodding dog. I have also started getting strange pains, mainly in my feet, arms,legs it’s like a dull throbbing ache.

I’ve seen the GP so many times, one thought it was my ears, another said vertigo, another said nerves, i’ve just been told so many things i’m confused !!

I’ve had ECG as I’ve been having occasional chest pains too, that was all fine, my bloods have been ok, some borderline normal/high but they said not significant. Have just had a test for inflammation, waiting for results. GP is sending me to ENT to rule out Meniere’s Disease first and then said would be onto Neurologist after.

I just don’t know if I’m completely barking up the wrong tree here but I am honestly at the end of my tether & feel like I can’t take this anymore. I’m only 32, I have 3 young children, I should be enjoying them but instead I’m feeling like this ???

Should I be here, are these the potential symptoms of MS or am I just a nervous wreck ? I don’t feel nervous other than when I start to feel dizzy and like I’m going to pass out, arghh I don’t know.

If you got this far, thank you xx

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Hi, you seem to be having an awful time and I wish there was something I could say to help. As you read different posts and replies on this site there seems to be so many people in limbo. The hardest thing i think is that a lot conditions have very simalar symptoms.iHopefully the tests you are having may shed some light on things. Good luck and I hope you get some answers soon. Karen

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Hi Becca

Pleased you felt able to post - we are a friendly bunch and there will always be someone who can help or lend a sympathetic ear.

You have a lot going on at the moment, but do see if you can rest up a bit as stress makes lots of symptoms worse.

Your GP seems helpful in that he will send you to a Neurologist if the ENT doc can’t help. That’s a good start.

Neurological things can be hard to diagnose, especially things like MS as so many symptoms are common to more than one condition.

The answer to your question is - Yes, you should be here. This is the site for all of us with unexplained symptoms for which we need a diagnosis. You’re very welcome, so do let us know how the ENT appointment goes, and if you get a Neurology appointment.

Take care, and do keep posting when you need to - it’s good to talk .

Bren x

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If there’s anything I’ve learned, it’s that many of us who first come here are unsure if we ‘should’ be here… regardless of whether we’ve received an official diagnosis or not, though, this is a place of understanding. Welcome!!!

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Hi Bekka and welcome

No, I don’t think you’re a nervous wreck!

You’ve had a lot to contend with healthwise and despite how you’re feeling and all the worry that it brings with it you’re also looking after your family as well as dealing with the hum drum things in life that we all face.

It seems to me that you have a very proactive GP who sounds determined to get to the bottom of things - which is a major plus!

The ENT specialist may well find the cause, but if he doesn’t and you are referred to a neuro then consider it as another step forward. Take each day as it comes.

As others have said it can take a while to determine what the cause is if it’s something of a neurological nature because so many conditions can have ms type symptoms.

Everyone is welcome here and one of the great things about this site is that we all understand so don’t forget that we’re always here with a listening ear.

Good luck with the ENT appt and let us know how you get on when you get a minute

Debbie xx

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Hi Bekka,

With regard to the standing up problem it may be worth doing a search for Orthostatic Intolerance or POTS (Postural Orthostatic Tachicardia Syndrome).

I have this problem too if I sit or stand for any length of time and find myself squirming about or jiggling from foot to foot as I really do feel as though I’m going to keel over. Things like repeatedly bending down and standing up and standing in shopping queues are a nightmare. I try to drink plenty of fluids and stay as horizontal as possible.

Btw, I am undiagnosed as yet apart from existing ME/CFS diagnosis.

Mags :slight_smile: xx

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Hi Bekka

you must certainly are in the right place. Whether it is/isn’t MS you’ll find an understanding ear here. The plan of if ENT can’t find something I’ll refer you to a neuro sounds good.

Have you had your routine bloods done (i.e vitamin B & D, liver, thyroid, ANA - for auto-immune stuff like lupus or sjogrens)? Many conditions could give rise to come of the symptoms you have so the diagnostic journey can be slow and it’s more a process of elimnation. If you haven’t had any bloods you and the ENT comes back with nothing your GP can always send you for these whilst you’re waiting for a neuro appointment - just a thought.

Best of luck for your ENT review. Hope you feel better and start moving closer towards gewtting your diagnosis. In the mean time we’re all here to help and support.

Reemz

X

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Hi Bekka x just wanted to back up what the others have said & to say good luck with your appointment - hope you get some answers xxxjenxxx

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Hiya, I’m not diagnosed but have symptoms, and would like to say that the people on this site are fantastic and knowledgeable (have i spelt that right).

I have a brill partner who I can talk to and say anything to, but he doesnt have the knowledge and experience that the good folk on here do. I never feel alone when I come on here and am grateful to everyone who reads and replies, its really helpful for me and I feel part of a group of people who have similar stuff to me going on.

I hope you get some answers to your probs, and dont be afraid to ask anything on here, theres always someone to talk to.

Jan

xxx