Awaiting MRI to test for MS :( *Update*

teabag29

Hi everyone, just wondered if there are any ms sufferers on here and if so I have a few questions. Bit of background 1st, Im 34 and my 1st symptoms started 2-3 years ago when I got a horrible feeling in the back of my left knee followed by bad back ache, it lasted days and was accompanied by a lump in the vein on the back of my knee. I assumed it was a varicose vein but i began to get chest pain to so i went to emergency dpt (as i was in hospital visiting my mother at the time) just to be sure. The dr thought it was maybe a back injury and nothing serious.

Since then ive had this over the years, maybe twice a year but each time it lasts longer and such a horrible feeling. I also get a pins and needles feeling in my head but assumed this is something everyone got from time to time, I put it down to laying in awkward position.

Fast forward to last year and my health has deteriorated badly. Its started when I became pregnant with my son, I spent much of the whole 9 months on the sofa and in and out of hospital being hydrated, I lost almost 2 stone (I had hypermesis). After my son was born I was ok for 2 months then I began to lose alot of hair, I know this is normal after pregnancy but not to this extent, i now have to try and fix my hair so my scalp isnt showing. My periods were very heavy too (16 days) but thyroid tests came back normal.

Last month I began getting terrible pains on my left side and within a month id been diagnosed with gallstones and had my gall bladder removed, then gone back due to ongoing pain where my liver function results were coming back as 600 instead of around 100, I had an MRI which showed a blocked bile duct so then had an ercp to remove the stone blocking it. I was dischraged the following day. That was 3 weeks ago.

As i left the hospital I was getting terrible back and chest pain but put it down to side effects (as chest infection is a side effect of an ercp). Within 3 days I had that horrible feeling in my leg again and also that lump in the vein but this time it followed in my arm. A few days after this i lost part feeling in my arm, well my whole left side really, it all felt like i had pins and needles and felt weak and heavy, especially at night, the feeling is similar to when you bang your funny bone.

I went to the gp and by that time id had this feeling in my left side for 5 days with bad back and chest pain and hard to put weight on my left leg. The gp said my face was drooped on the left side also and sent me straight to AnE as she thought id had a stroke.

I had various tests for heart problems and they concluded my problems werent heart related but nor did they think it was my veins as i had put it down to. I thought they were worrying to much until they did some more tests on me, they did reflex tests, feeling tests, balance tests and all showed a weakness in the left side. I couldnt walk on a line properly i was wobbling all over it felt as though i was drunk. I saw a neurologist who booked me in for an emergency outpatient full brain and spine mri to check for ms.

That will be 2 weeks ago on friday, i am still awaiting my appointment but I still have that numbing sensation on my left side which feels horrible and hurts when anything cold touches it. I have terrible itching on my left side that wont go nomatter how much i itch and my left arm feels like ive burnt it (this feeling comes and goes). Then on Sunday night I lost about 70% of the vision in my left eye, I couldnt even read a text message on my phone right infront of my eye when i covered my right eye, it was just too blurred. Thankfully this was gone by monday morning and ive not had that since.

Ive also had a lot of confusion and memory problems. E.G. i could be in town shopping and on my way to a shop and suddenly i'll forget where im going and what im even doing in town and it will take me anything up to 20 minutes to remember things, or ill say the wrong thing that doesn't make sense. Yesterday i asked my daughter is she had turned the heating off and my children laughed and said for the 3rd time mum yes, youve already asked us that twice in the past 15 minutes. Im also tired alot but that's something that's been present for many years.

So now im waiting for this MRI. The questions im wondering is, does this sound like MS? (on the discharge letter they say possible MS or vasculitis) also if it is MS, realistically how long does it take to deteriorate to a point where life becomes very hard? Ive looked on the internet and it says people deteriorate after 10-15 years and some end up in wheelchairs but when ive looked at sites where people talk about their ms it seems that they have gone down hill much sooner, only a year or 2 after diagnosis.

I guess i shouldn't be worrying about things until I know the outcome but id rather prepare myself for the worst. Sorry for the long post, all replies appreciated x

****Update... so even though the MRI was stopped due to poor quality images caused by my brace, i went to the GP today to see what happens next and he logged into my hospital results and explained that although the images were poor, they did show lesions and so it is highly likely i'll be called back in for a repeat scan without my brace. With all the symptoms pointing to ms and now lesions, am I right in thinking that its looking likely that this is ms? and for any other ms sufferers, is there any drugs that help with the tiredness im feeling all of the time?

rogerblack

teabag29 wrote: »

also if it is MS, realistically how long does it take to deteriorate to a point where life becomes very hard? Ive looked on the internet and it says people deteriorate after 10-15 years and some end up in wheelchairs but when ive looked at sites where people talk about their ms it seems that they have gone down hill much sooner, only a year or 2 after diagnosis.

There have recently been advances in drugs on MS - so past history is not always representative.

Going forward - it is vital that you take any prescribed medicine, and if you can't take it because of side-effects, you tell the doctor, so they can try a different option.

You may find https://soundcloud.com/bmjpodcasts/ms-relapse?utm_source=feedburner-bmj.com+download&utm_medium=feed&utm_campaign=Feed%3A+bmj%2Fpodcasts+%28The+BMJ+podcast%29 relevant.

This is not aimed at patients, but may be informative - it's aimed at GPs treating MS.
This is a podcast by the british medical journal.

This may all be jumping the gun - it may not be MS.

teabag29

Thankyou. I haven't been given any meds yet, not even pain relief. I hate taking drugs of any form so that will be hard for me (i didnt even have ANY pain relief after each of my 5 c-sections) I only take medication if its absolutely essential, the thought of having to take it daily is scary

Torry_Quine

Even if it is MS that is no guarantee of how it will progress if at all so get that out of your head. Also there are many treatments now to alleviate attacks and symptoms so who can say what the future holds.

This period of not knowing is hard, have you someone to support you?

gers1976

Hi teabag

I too am going through this I have a neurology appt next Thursday so will hopefully find out a bit more then. Mines started approx 5 years ago with a pain in my leg where it felt very heavy and weak and I put up with it for about 6 weeks and then went to doc who gave painkillers etc and it did eventually go away nearly a year passed and the same happened again and they thought then it was more arthritis so was sent for some tests etc and they said no defo not so still was no further forward. Then last summer I had a few things going on the leg with previous problems have way on way to work 1 morning and I fell and upon getting back up it had pins n needles. Then in the same week I also had tightness in my arm (felt like I had a blood pressure band on constantly) I thought this was a side effect of the new tablets I had been given for blood pressure.

I ended up back at docs to explain arm etc and said I thought it was a side effect of bp tablets he wasn't convinced but changed them anyway and said I had to keep a note of what was happening and go back month later. So back I went and was now having pins and needles in my feet and had lost the strength in my left arm so he decided nope it wasn't right and done a few basic tests - he basically said I am very weak on the left side and I have no reflexes and he kept asking if I had pain in my left eye (I don't ) but he said my left eye wasn't right . He then asked me if I had heard of Ms and I kind of gave a nervous laugh as my husband also has Ms he was diagnosed in 2010 so that's my story up to now. It's all just a matter of waiting till I see Dr next Thursday and go from there .

Like somebody already said I wouldn't worry about how quickly people deteriorate as there are 4 types of Ms with relapse remitting being the most common one and you may only ever get a few relapses then nothing else . My husband still works full time and just gets on with things the best he can .

Try not too worry and I will update next week once I have seen Dr xx

teabag29

Thanks, sorry for the negative post just feels like everytime i pick myself up in life something else comes along to deal with. I saw gp yesterday to chase up the mri but he said i need to ring them and chase it up so doing that this morning. I think its the not knowing is harder x

NotBothered

I have been diagnosed for nearly 5 years now. RRMS. My first "episode" as five years prior to that - the ability to pee suddenly left me, but came back again around a month later with the same sudddeness (bizarre). Five years later I lost part of my sight and was diagnosed with MS.

Since then I have been up and down. I have good days and bad days. I tried to different types of disease modifying drugs, but both just sent me on a downward spiral of depression, anxiety and paranoia. It was horrendous, and with only a 29% chance of the drugs actually doing anything to prevent a future relapse I decided to take my chances with the disease itself.

Since that decision, I have taken pain relief for the muscle spasms and most importantly upped my dose of regular Vitamin D - speak to your MS nurse about this as there is sound evidence that this is helpful. I have also taken the attitude that I am in charge of my own body for now and I will use it or lose it! Yes MS may rob me of certain things in the future, but for now I refuse to curl up in a ball and wait for MS to make its next move.

I have taken up running, I am working hard to lose the extra weight gained through giving up smoking and the meds and I have finally convinced the Neruo that I am no longer depressed and I am safe to resume my hobby again.

No MS patient is the same, but I strongly believe that a Positive Mental Attitude is half the battle. I have MS - MS does not have me.

Stay strong!

colin13

notbothered,,great post,i was diagnosed 1999,still walking short distance with walker,,as u say drugs are sometimes worse than the illness,,not that ive ever taken any,,we are stubborn bunch of guys,who will not be beat,,but only bit of advise i can give teabag is,if u need an aid get it and use it,dont be idiot like me who used stick outside local town,but not in my town,,aids are like glasses,,if u need aids use them

rogerblack

colin13 wrote: »

notbothered,,great post,i was diagnosed 1999,still walking short distance with walker,,as u say drugs are sometimes worse than the illness,,

Drugs may be worse than the illness, for some, for some drugs.
There are fairly recent newer drugs on the market that significantly improve long-term outcomes for some people.

Telling your doctor that you can't tolerate a drug is vital, so they can see if they can fiddle with the dosage or swap you onto one you can manage.

Are there people that can't tolerate any of the drugs - yes. But many more can manage.

Bluebell68

Hi
I was diagnosed in 1997
take the tabs don't get rid of all the pain unfortunately
the vision in left eye is bad some times goes all together
takes left side with it could be hours days or longer


I have good days now and then n total carp ones

so I smile n plod on as much as I can which isn't very much any more

I tell myself their are millioners /Billions worse off than me

all I can say is take each day as it comes good and carp ones

i have spasms horrendous headaches cramp's a thing called MS Hug stupid damn name

I don't sleep much which doesn't help
so again I smile i say yep im ok or fine till i need go toilet then hubby has to help
come on here if want to chat to any of us
take care

love Bluebell
x

teabag29

Thanks for all the replies I really appreciate them. I have an appointment with the consultant next week as my symptoms are ongoing and getting worse while I wait for the MRI (brain and spine with contrast whatever that means). Does anyone else who has MS ever get a pins and needles type feeling in their head especially at the back, its driving me nuts along with the itch that just wont go.

Also my sinusitis is back badly (if that's what it is, constant runny nose and sneezing and pain in nose and eyes, got diagnosed same time as all my symptoms started years ago), does anyone else find they get a lot of colds when their MS flares up?