Forum

Suspected MS since 2008!

Hello all, in 2008 when I was 27 I started to experience left sided numbness in my leg. I went to my gp who refered me to a neurologist. I had an MRI scan and at follow up was told I had white matter hypertensities that was significant of my age. I have a history of depression ever since I could remember. Without much explanation the neurologist said I would need beta blockers. I was reviewed every 6 months then every year which I had MRI scan. They kept on talking about lesions. During this time and over some years I was having servere migraines, I was refered to the headache clinic twice 11 years later still waiting an appointment, I haven’t had an MRI now for 3 years. I have been getting numbness, tingling, crawling sensations,frequency and urgency to pass urine, servere constipation, back pain and blurred vision ever since. I have been admitted to hospital numerous times with chest pain and no explanation why. In 2016 I went into urinary retention for the first time I had an indwelling catheter for a few weeks and then it was taken out I was fine. I had a urodynamics test which the results had been lost and surgery to look at the bladder and kidneys. Apart from getting the symptoms above off and on I was ok for a while,well thats until June 2018. I am a student midwife. I was at placement and I kept on having urgency to go to the toilet ( normal for me especially in the night) ,everytime I went nothing would come out. I kept of sweating, my mentor told me to go home as I was in alot of pain getting waves of shocks in my stomach. I got the tube and by the time I got to London bridge I collapsed in so much pain. I was rushed to hospital where I was told I was in retention again. Ever since I self catherterise 5 times per day. The first week of January 2019, I woke up unable to move not 1 leg but both! After a few hours the numbness eased off and I was able to move around slowly dragging my heavy legs. I was like this for a weeks, then I started to get shocks in my spine and legs, muscle spasms and burning in my ankles and hips and urgency to open my bowels even in the night. I was feeling so drained and tired. I went to the gp who gave me amitriptyline ( I actually took them 5 years ago) I still did not see a change, the gp re referd me back to neurology and gave me pregablin I took for a week and went back to gp as I felt no improvement I was exhausted, I was given sleeping tablets. The sleep did help but my muscles were still feeling tight and from my waist down felt like every muscle was swollen. I got my urgent appointment for the 8th May 2018. I went back to my gp who has now given me Baclofen. I still see no improvement. I am in constant pain, I feel week and exhausted the sensation of crawling on my skin is drivimg me crazy. I have only left my home to go to my gp surgery which is at the end of the road, I can’t walk properly I have a walking stick. The only time I have left my home is to go to the gp. It takes me a long time to do tasks I cannot stand longer that 5 minutes without pain and burning. I have a continuous headache my tongue keeps sweeling up lasting for minutes and going down, I have trouble sleeping and I’m just so weak, depressed and frustrated. I just need the MRI and nerologist appointment. I have inturrupted my studies for now.

Blimey Lina, you’ve had a hell of a time.

It does sound as though there is something amiss and your GP perhaps should have referred you with a bit more urgency about the matter. Given that you’ve had lesions in your brain for over 10 years, symptoms reminiscent of MS, and the drugs you are given for symptomatic relief are the same as you might be given were you to have a diagnosis of MS, I suspect there might be something amiss neurologically.

You do have to remember that many, if not all, of the symptoms of MS can also be found with other diagnoses. But in your situation, I’d be furious that your neurology appointment isn’t for months.

What you could do is phone the hospital, check with the admissions team that your referral was marked ‘urgent’ by your GP. If not, go back to your GP and ask them to re-refer as an urgent case. If it was an ‘urgent’ referral, ask whether there is any chance of speeding it up. If they can’t, try talking to the neurologists secretary and ask if there’s anything s/he can do to speed it up.

Best of luck.

Sue

Thanks Sue, It was marked urgent and the gp has sent another referal. My Mother and sister have MS and are convinced. I just want to see the neurologist. I have a list!. It is very frustrating and I have not had much choice other than to deal with it all, I just feel I cannot cope at times and my children are very worried about me. Hopefully I will get a cancellation. I sent the neurologist an email three weeks ago and have not yet had a response. I am just hoping. Cheers Lina

The past 4 weeks, I have been taking Baclofen 10mg 3 times per day,Gabapentin 300mg 3 times per day, Naproxen 250mg 3 times per day and Duloxetine zentiva 30mg once a day. my symptoms appear to be getting worse. My feet ache when I stand up, I always fall over and trip up. The fatigue is killing me and the worst is the burning sensation. Counting the days down to the neurologist appointment. I dug up some old neurologist letters what does signal changes mean?