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