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Under investigation and Desperate for advice

Hello everyone it’s lovely to meet you all even though it has to be as a result of MS l am very appreciative of the opportunity to chat with you.

My story is long and hopefully won’t frustrate anyone, I really do understand what it’s like when people try to rush to an unsuitable diagnosis but assure you after 18 years of illness this is not the case with me.

I’m not saying I’ve had MS for 18 years, or that l definitely have it, l really don’t know but my symptoms began around that time. Severe fatigue, brain fog and lack of coordination and as a result l was diagnosed with ME/Cfs. I accepted this diagnosis at the time and over the next 13 years experienced bouts of theses symptoms on and off (which is actually quite inconsistent with ME/Cfs).

5 years ago things took a turn for the worse and my symptoms started to change significantly as follows:-

  • Muscle stiffness in my legs with jerks and spasms for which l have been prescribed Cloneazepam.

  • Restless Leg Syndrome ( have had this most of my life but now unbearable) prescribed ropinerole

  • Fatigue again in bouts but more debilitating than it was previously. Several periods of severe fatigue lasting up to several months which left me bedridden and lost me my job

  • Pain around my ribs that leave me unable to breathe

  • Balance problems, falls, walking into doorways etc.

  • Pins and needles and numbness on my face and feet

  • Chronic hip pain

  • Paralysis of my left leg first time while in the bath, I can rise from sitting and it will just fall away from under me, I can’t move it into the car using the muscles in my leg often having to physically lift it with my arms

  • Bladder issues - have seen urologist who after doing several tests is convinced that l have MS from my symptoms and is stating they are neurological and not caused by my bladder directly more by nerve issues. I am now being taught self catheterisation as my bladder is not emptying properly.

  • Bowel issues- loss of sensation in my back passage don’t feel when I’m having bowel movements which obviously causes incontinence.

  • Menstrual issues -apologies guys tmi missed periods for 7 months (I’m 38) drs carried out blood tests and not menopause or peri menopause.

  • Eye pain

The problem l have is that the consultant urologist and a consultant in orthopaedics that l have seen on several occasions are both convinced and have written to my neurologist that from my symptoms MS seems to fit. To an extent l think my Neurologist agrees with this too. I’ve had 2 brain mri scans and two lower and two upper spinal mri scans in the last six months but they are all clear.

I have been advised the next step should be a lumbar puncture and evoked potential test but to date these have not been booked.

I’m just so frustrated and scared and wondering if it is MS, if it’s been MS all along, if anything could have been done sooner just so many questions and not a lot of answers.

If anyone has had any similar experience or can help me with any advice l would be extremely grateful.

Thank you so much for taking the time to read this.

Take care and stay as well as can be expected.

Many thanks Gigi x

Hi Gigi, I’m sorry to hear you’ve suffered all these years without a firm diagnosis and hope you finally get answers soon. That way you should be able to access the appropriate medications and resources needed to help you in your daily life.

I’ve had MS since childhood (so never experienced Limboland) but have suffered all the symptoms you outline. I’m retired now but have had a good life even with MS and the myriad of symptoms at different times and with different severity states.

I can’t offer any advice as such but think the worse thing is the not knowing what’s wrong and the waiting until the doctors finally figure it out (Limboland). I hope the lumber puncture helps to give you that answer soon.

Thinking of you hoping things ease for you. Mx

Thank you so much for your kind words. Sorry to hear you’ve had MS for so long but it’s reassuring to hear you say have had a good life despite the MS and I’m glad for you that that is the case.

I think that is the thing, over the years I’ve had relatively stable times myself and certainly can’t say my quality of life has been been particularly poor but yes you’ve hit the nail on the head “limboland” is making it harder than it needs to be.

Thanks again for your response much appreciated x

Hi Gigi,
Not much advice I’m afraid. I just really wanted to thank you for spacing your post out so well

I can’t usually manage to read such long posts if they are just a long solid block of text but as yours had lots of spaces it was ok for me to read.

I’ve had RRMS FOR 11 years. Discovered I just have to be patient for investigations, tests prescriptions of meds etc

I am currently due another MRI but the MRI scanner is broken :sob: I can’t fix it​:joy:

Hate this new site I want to scroll up as I could on old site - on iPad- but can’t so I can answer your points better.

So sorry :disappointed: I’ve probably missed loads. All this text I am typing is in a static box so flipping heck how can I now see what you have posted.

So ok I was brave!!! and pressed the 2 arrow symbol to the right and got back to your post to re read your points.

Bladder started ISC in March 2010 before I was actually diagnosed with RRMS in September 2010. ISC just improved my life so much without the endless search for loos when out as just needed to wee so often.

Desmopressin is my magic tablet as usually stops me having to get up an wee at night.

Bladder Botox which I’ve had the past couple of years also helps a lot. Means I can hold more in my bladder before I need to wee.

I am struggling to accept that I will never wee normally again.

Eye pain - yes - very acute feels like my actual eyeball is in pain. A few years ago the MS Neurologist thought it might be a relapse and this was one of the factors that helped me get on DMDs

I take codeine and ibuprofen for the eye pain as is the only tablet I have found to take the pain away after an hour. But that means I get constipated.

And oh yeah I’m currently waiting weeks and weeks for my MS nurse to get me a quofora anal irrigation gadget- oh yeah MS totally stripped me of any dignity.

I just find this so frustrating as I’m in discomfort most of the day with constipation. If this gadget works then it would improve my QOL so much. I actually worked out yesterday that I could be off sick with this constipation it causes me such discomfort. And worry that I’m gonna end up pooing in the wrong place lie my pants rather than a loo.

BLOODY HELL - are we allowed to swear on this new site? I am rambling now so will stop.

On the old site I used to press post at the end to post. Now do I just press reply? Or does that just delete everything?

Good luck
Min :purple_heart:x​:purple_heart:

I have or had most of your symptoms, too. My MRI’s were clear until a couple years ago, and I passed my evoked potentials. The neurologist sent me for a whole battery of tests because he was leaning towards MS just based on my history, but of course it can’t be diagnosed that way.

It was the first time I’d had an MRI while I was in the midst of a major exacerbation, and I think that’s why my lesions finally showed up. He sent me for the lumbar puncture just to verify what he was seeing.

Get your spinal tap and evoked potentials as soon as you can, and maybe they can finally give you a diagnosis.

Hi Gigi,

I came across your ISC post, but then found this so I thought I’d reply here.

I may be too late, but please, please don’t do ISC! I did it for 9 months 2011-2012 and it was nothing short of traumatic.

A far too invasive procedure that made a mild problem worse - because the cause was hypertonic pelvic floor muscles, among other things, not a bladder problem.

It’s a complex tale - full story on my blog (can I put links here?): The doing: Intermittent self-catheterisation – The medial malleolus

I’m 43 and received a diagnosis of RRMS in April 2002 when I was 24. For 11/12 years, I believed I had (mild) MS and spent 10 years on Avonex.

Then in November 2013, I had a revelation (largely due to the ISC debacle), stopped taking Avonex, and have since spent nearly 8 years now undoing the damage that the MS diagnosis caused.

I’ve discovered my problems weren’t MS at all. But I’m still healing, moved to Spain 5 years ago, and haven’t spoken to any doctors about this, so it’s all still unproven except to myself.

I’ll be spending the next few years being vocal about it, challenging the diagnosis etc etc, but at the moment I’m just trying to get my life to a stable place.

I’m not sure I belong here, but had to say something about your situation.

All the best,
Alison