what do you lot think?

I’ve been procrastinating for the last 5 days about whether to post in here. A part of me doesnt want to and thinks Im being silly, but another part of me thinks that my curiosity needs sorting out once and for all.

I have had a funny old 3 years (this oct will be 3yrs) with my declining health; but on reflection i have not been very well since 2006- possibly beyond that too. And on Thurs just gone a consultation with my GP has left me with the words MS hanging over my head and an appointment to see a neurologist in the post. It’s agreed by myself and my GP that some of my lovely symptoms could indicate MS, or they could just be individual niggles. However, its played on my mind since, so I thought I would pay you lovely lot a visit and put my situation to you and see what your opinions are. ANY opinions completely welcome, and I shall endevour to answer any questions fully

I dont remember how it started in particular, but I can hazard a guess at around the time my daughter was 9 months old. I started having severe lethargy, which I put down to being a new mum. Then the tingling across my back, followed by dizzy spells. I went to the GP who ran some bloods. It turned out I was B12 deficient. Pernicious anaemia was suspected, and I had a loading shot followed by 5 more to get the levels back up. A re-check 3 months later showed my levels normal and PA ruled out.

I was checked a month or so later and B12 appeared to be within normal range. Never recalled for another check.

Ive never really felt well since. My back has been in near constant pain for such a long time, and I have been medicating with opiates for pain etc… But this last 2 years it has been the worst, agony. I had trial surgery, being a guinea pig and the 2nd person in the world to have Electronic Neuro Stimulator rods implanted into the Multifidus muscles of my back. This showed promising signs at first, but since December it has failed. Im having a 3rd surgery this Thursday, and this is to remove it. I cant have an MRI with it in my body.

I started getting severe pain in my stomach, around ovulation time, so bad I couldnt move for a day. Certainly couldnt go to the loo without feeling feint. GPs have been investigating for Endometriosis, but results showed nothing. They have decided its a little known condition called mittelschmerz.

I rarely poo without using laxatives, and a bowel colonoscopy showed normal, so nothing to indicate why this is. I now used Movicol, some little yellow and white prescribed laxative and fleet enemas daily to evacuate my bowels. They labelled me as having IBS with slow transit. I get no urge to poo, it just sits and collects if I dont use lacatives, and this becomes seriously painful and I have been known to go 6 weeks without defacating. Not nice. I also struggle to push, never feeling completely empty.

A kidney scan for back pain showed stones, which when the re-scanned had suddenly disappeared. This investigation has all been taking place since December 2009. In November09 I was put on Prostap, to halt my periods and I had 4 months worth of treatment, my periods did not return to normal for a whole year after stopping the Prostap. I couldnt bear the pain of the added agony around menstruation/ovulation and it was agree’d a total Hyseterectomy was the best way forward. This took place in March this year.

In October 09, I started feeling blue, I suppose I had been having episodes of depression on and off for a year before but I always counted my blessings (my daughter is IVF) and shook myself out of it (or I tried to). By late Oct 09 I was in full blown depression and off work for 4 months, on Prozac. I couldnt believe how rapidly I went downhill and neither could my family or colleagues. I literally slept for 4 months. I took myself off Prozac in April 2010 as they were just not making any difference to my moods and I felt strong enough to get better with just counselling. Im back with Mr Depression this last few months, and have been referred back to couselling. I put the depression/low moods down to being in pain and the fatigue/crummy sleeping pattern I now have.

I caught Shingles in April 2010. I began the Shingles illness with severe Vertigo, I felt a whoosing in my head that made me feel nauseous. This stayed when the Shingles left. I now have regular vertigo episodes, the same wooshing sensation in my head.

I had a rather unsettling episode 4 yrs ago now. I awoke in the morning as usual, and tried to get out of bed, I couldnt. It was as if I was paralysed from the breast down. terrifying for me actually. No matter how hard I tried to get out of bed, I was glued. 2 hrs later mum pursuaded me to go to A&E, and dragged my backside up and out of the house and to hospital. 4 or so hours at A&E later, and ofcourse it was wearing off, and the burning pain I was getting was wearing off also. They gave me antacids and declared that my stomach caused it, apparently the acid had burned through and irritated my spine. The most ridiculuos excuse for an explanation I have ever had. I sucked it up. I dont trust the medical profession, and therfore never asked them to delve into the real cause. I havent had an episode like it since, but it did precede the back issues I now suffer with.

Over the years I have had little ‘things’ happen, that I just put down to the fatigue, the pernicious anaema or the meds. Im on a fair amount of medications, including amytriptiline and Pregabalin for ‘nerve’ pain. I occasionally miss the colour red, which can be highly dangerous when driving. I can go through episodes of total lethargy, for no reason and I can be so wiped out even the smallest of tasks can have me in a small coma (it feels like that anyway). I have been known to sleep a week away, with the exception of having ot wake to do the school run and feed the fam. I swing from being narcoleptic to being a complete insomniac! I survive on little more than 3hrs sleep a day now, due to pain.

Pain! My pain has transformed from my usual back pain (lumbar region, across the back… due to atrophied multifidus muscles) some 6 months ago I started having what I can only describe as gnawing bone pain, top of my right fibula on the outside of the leg at the knee joint. Wow, this one is incredibly painful. Xrays revealed nothing. Im sure my GP thinks Im a hypochondriac. Anyway, this last month, that deep pain has paved way to a cold shiver. Inside my lower right leg, shivers, tingles, then the calf muscle goes tight like its cramping… this is now pretty constant and worse on a night or at rest. It is making my life a living hell. I have developed a limp, its painful but I cant say thats whats causing the limp… more the leg is heavy and doesnt feel like its my leg. This sensation is a new one on me. To top it off, my other leg, the left leg, took offence to my lovely cow print dressing gown the other day and the mere touch of fabric across the top of my thigh was painful. Like I was being burned. Im falling to bits!!! ,

I have numbness in the tips of my fingers, this can travel up the forearms on the outside. Numb arms for days sometimes, but it goes as quick as it comes. My right wrist can no longer support my body weight when trying to get up and down, its weak at the joint and sore. I can have what I call sausage fingers… when they just dont want to do fiddly things like fasten zips or buttons.It is pretty frustrating. Not all the time, just episodes.

I Also periodically I have what I think are axiety attacks. My entire chest feels like Im being bear hugged, this can last for hours, and I literally have to pace to try breathe as its pretty scary stuff.

Thats about as much as I can remember for now, I’ve been coming back to this post for 2 hours jotting what I can remember. So, am I fit for the knackers Yard. Oh yeah, Ive just turned 37… and Im female, I answer to most names but Eva is easiest all round lol. ( from Russian/Polish Stock, so got blessed with a randomly Russian name)

I’ll leave it for now as its a fairly big post. Hello to everyone. I look forward to seeing what you all make of me hahahah. xx

I dont believe I missed out the fact that I was diagnosed eventually in 2010 with Pernicious Anaemia/B12 deficiency and recieve injections every 3 months, and folic acid. My bloods always come back iffy. Always anaemic, a lot of the time I have high white counts too… they put it down to fighting infections I didnt know Ive had.

Hi Eva and welcome

I’m glad you’ve decided to try and get to the bottom of things - it’s the best way to get help after all.

It’s great that your GP is on board and has done the neuro referral. Whether or not it’s MS remains to be seen, but at least you’ll now get it properly investigated.

I hope you get some answers soon.

Karen x

Hi Eva,

Welcome and I hope u get clarity soon. x

Hi Eva

You really have had a tough few years havent you!

Its good that your GP has finally referred you to a neurologist, and I really hope they can get to the bottom of whats going on with you (for your own sanity if nothing else!).

I hope you get a great neurologist and he/she investigates thoroughly and please keep us informed.

Good luck and take care Eva

Paula xx

Hello Eva and welcome

You’ve sure had a run of bad luck these last few years so hopefully now that you’ve been referred to a neuro he’ll work out exactly what’s going on or refer you to someone else if needs be.

It’s hard to do but try to keep an open mind, take one day at a time and see what each test throws up.

Good luck & let us know how you get on

Debbie xx