Confused and need some info please

Hi I’m new here and have checked to see if there have been any similar posts but not found any and would appreciate some help. You might think I’m on the wrong forum but please read on and you’ll maybe see why I’m here. Apologies for typos, my concetration and vision are a bit naff at the moment.

Since last year I’ve had numbness come and go in my fingers and weakness in my left arm which I noticed firstly around my elbow and when I stugged to lift my arm. I put it down to the way I sat in the office and possible being unfit.

The numbness in my fingers worsened and also began to feel sore so I got fed up and went to my gp who said it was carpal tunnel.

On Feb 10th I woke during the night with numbness down my left side and when I got up I was not stready and my words were slurred. I contacted my GP who advised me to go to A&E as it may be a stroke. CT showed nothing and the next day I was sent for an MRI. In the mean time my sympotms continued to develop. My knee and around my ribs felt as though they were encased in something rigged. I began to have blurred and double vision wtih ghosting. I became constiated and had a fee accidents as I didn’t realise I needed to pee.

Initially the consultant said she wasn’t convinced I had ha stroke, then looked at the MRI and said I had had a stroke - a pons infarct of the right cerebellum. She was still not sure what was going on as the stroke appeard on the right and my left side had been affected.

Since then a good bit of function has come back but I’ve had ‘episodes’ when numbness returns for a few days and I get more confused, my vision worsens and I generally feel all over the place. It mostly settles butsince the last episode, feeling is still quite numb with throbbing/pins and needles in my hand, lower arm and foot.

I get these horrible sensations and pains. Burning in my left leg which gets so uncomfrotable I can’t stand things touching it. I also get pain in my arm which gets more intsense as the day goes on and is accompanied by really painful elecrtic shocks on the top half of my arm, the back of my laeg, bum and lower back and my left breast.

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My vision is hugely imporved but I feel dizzy when I stand, am traveling or whent he light is bright. I also get double visiion at these times. I still have ghosting and struggle to read black on white and large amounts of text.

Fatigue is one of the worst parts. I dont; sleep well at night. By the afternoon I’m useless and have to lie down almost every day. I’ve never felt atirdness like it. It’s a mix of jet lag and the auto pilot we go on when we have babies.

I have a range of other sympotms which I know are common in stroke patients HOWEVER, last week at rehab the Dr came to find me as she had seen my last MRI (taken to rule out any problems in my neck that could cause firther stroked). She said she spoke to the hopital and they want to refer me ack to the neurologist as swelling of the nerves can be caused by other things in someone my age (39). I asked wha,t and she said MS; nothing a nasty as a brain tumour. This is a bit of a curve ball in terms of investigations as the sympotms have been present for 11 weeks, and nothing, as far as I am aware has changed. I can only assume she feels the MRI is showing something that together with my symptoms may point to MS and they want to investigate further.

It was a lot to take in so I didn’t ask any other questions and felt the Dr didnlt really want me to. Now I’ve started to take things in I’m quite scared. It’s been quite tough taking on baord that I’ve had a stroke at 39yrs old having not been in nay of the high risk groups. Having this on top has me quite tearful - fear of the unkown is horrible.

My questions are

Has anyone experinced this type of thing?
What can I expect nex,t in terms of investigations?

Hi Nicn

I am sorry to hear you are having such a rough time - you must be feeling very confused and frightened.

I have not experienced the same as you so I am afraid I can’t help with that side of things.

No investigation for MS or other neurological conditions is the same, but maybe if I tell you what the process has been like for me, it might give you a better idea.

I am not diagnosed, but am currently being investigated for MS after a bout of Optic Neuritis last Oct, and subsequent bladder issues and various sensory problems/weirdness.

When they began to investigate for MS, I had lots of blood tests to rule out/investigate other possible causes for my symptoms. When these all came back clear I was referred to a neurologist and sent for an MRI of my head (brain and eyes). The results showed a few lesions and one bigger one which spanned accross two areas of my brain (periventricular) which is fairly typical of MS (as far as I know).

My neurologist asked me questions about my symptoms and my medical history. He also performed some neurological exams with me. This included testing my balance, my eyes, my reflexes and other bits and bobs. He concluded that there was not much more he could do for me at the time and adopted a ‘wait and see’ approach and discharged me with instructions to return if anything changed.

Some months after the ON, I experienced some bladder issues. Urgency/frequency/some incontinence. My GP re-referred me to the neuro. That appointment with the neuro was a couple of weeks ago. He confirmed that he strongly suspects MS and is sending me for a further MRI. Of my brain and whole spine this time. That scan is this Wednesday. I have a follow-up with the neuro to discuss the results on 6th June.

Unfortunately, it is a long process. There is no one test for MS and it is more of a process of elimination.

Of course, I am by no means saying you have it - there are many other conditions which mimic MS. I just thought it might be useful for me to tell you the diagnostic process as I have experienced it.

This is a worrying time for you, and the process of being in ‘limbo’ can make things even more stressfull.

Try to talk to someone about your feelings as it can make it so much worse to feel you are alone in this. This forum is a wonderful place to come and chat to people in the same/similar boat as you.

I hope this helps

PG xx

Hi there my partner is in the same situation as you he woke up in the middle of the night on the 20th march to go to toilet he stumbled out of bed and realised he could not walk had lost all feeling down his left hand side and his face making his speech slurred i called nhs 24 who called an ambulance as they thought he was possibly having a stroke. Once in hospital he had a ct scan which came back clear then next day he had a scan of his neck arteries which was clear also he then had to wait over the weekend to get mris head scan meanwhile his symptons got worse. Mri scan showed up lesions on both sides of the brain snd doc said 95% sure he has ms although further tests to be done. He was then put on a 3day course of strong steriods and a lumber puncture was done to get fluid from his spine to do tests he is still awaiting those results. After spending 11 days in hospital he was discarged as he got his mobility back. He is now at home but in limbo land with no medication or disgnosis. He can walk but the left hand side is still very weak so going for a walk outside is very difficult and tiring for him the now its like he has had too much to drink when he walks. He also feels heaviness from the waist down and gets very tired. He was given an mri scan of his whole spine last week which was recommended by the doctor when discharged. Now 5 weeks later and none the wiser he has been told he has been referred to a neuro doctor but this could be several weeks before he gets appointment. I decided today to book him a private consultation with a neuro doctor who was recommended to me by a nurse in the hospital this doctor is seemingly fab and specialises in ms. He has appointment on saturday ok we are going to have to pay for the doctors time but if it means getting a diagnosis quicker then so be it as this waiting about is not doing my partners state of mind any good as i can totally understand how you are feeling also its the unknown thats is frightening. I hope you get some answers soon also take care xx sharon