Forum

Awaiting Diagnosis.

Hi all. It’s nice to be here :slight_smile:

I have had symptoms on and off for several years but never been able to get an answer to what was going on. MS was proposed as a possibility a couple of times, but after two clear brain scans (ie no visible lesions), one several years ago and another early last year, MS was dismissed and it was all put down to being a bit of a mystery and would probably sort itself out in time.

About 10 days ago my left leg started losing sensation. I saw a new GP who thoroughly checked me over and said hopefully if would right itself. She told me, however, that if I developed any rectal or genital numbness or incontinence I should let her know.
5 days later my right leg also went numb and then a day later I got the symptoms she had warned me about (except the incontinence)
I called the surgery and the doc saw me later that afternoon. She feared cauda equine syndrome (a compressed nerve condition which requires urgent surgery) and sent me to the hospital with a letter.
After many hours going through the A&E system I was seen by a very nice doctor who admitted me overnight and arranged an MRI for the following morning.
The MRI was done and I was told I’d get the results late afternoon.

Luckily throughout all this I was still walking (a little shakily) and had not become incontinent but was visiting the bathroom regularly as could.not feel enough to be sure of no accidents.

As promised later that afternoon the consultant came back with a smile on his face and announced that my MRI was completely fine. Phew! No surgery!! And he was able to discharge me with a neuro outpatient follow up in case my symptoms didn’t resolve.

Highly relieved I was delighted to finally be allowed something to eat and drink, having been nil by mouth since midnight just in case, and eagerly awaited my discharge.

15 minutes later the consultant returned to my bed looking rather less chipper, and sat down.
He told me he had spoken to the chief neuro consultant to confirm his decision. During the course of their conversation he reviewed my patient profile and mentioned that I had had optic neuritis early last year.
Anyway the long and the short of it was, I was told that my most likely diagnosis is MS.
I was somewhat taken aback as the only bad news I had been expecting that day was that would need surgery.
To be honest though, after the initial shock wore off, I wasn’t that surprised. In fact I felt a strange kind of relief that finally I had an answer to years if questions.
He said he thought I was taking the news very well, at which I laughed and then promptly burst into tears. He held my hand and just sat with me.
I realised he must have felt pretty bad about having given me the all clear and then having to drop this little bombshell on me.
I also realised, from past experience of hospital doctors, that he would not be giving me this news unless they were pretty sure about the diagnosis.

I was sent home with a five day course of methylprednisolone and the gentle warning that if my symptoms worsened I would need to be readmitted. I will be taking my third dose today, so far no change (apart from possibly a slight return of sensation to my pelvic area), but certainly no worse.

I wad wondering what further diagnostic testing I can look forward to (!) when I see neuro? I am hoping they will not be relying purely on a brain MRI, as even after my optic neuritis that came back clear.

Having thought back over my previous symptoms, I have had numbness/tingling in my arms and or legs, fairly frequent episodes of facial numbness, ongoing problems with constipation, occasional slurring of speech, often using a wrong word mid sentence, and more recently problems with short term memory. More than usual clumsiness, and tripping. Oh and the optic neuritis of course.
I’m not sure how many of these are relevant to MS.

Anyway, that’s pretty much me with regard to my current experience. If anyone has any comments they will be gratefully received :slight_smile:

Kaz xxx

Hi Kaz

Welcome to the forum

I’m sorry you had such an awful experience at the hospital. I had a similar experience myself after being admitted through A&E four years ago. I had a 6 day stay in hospital while I waited for the MRI scan so you did very well to get one immediately :-). Anyway that evening the ward doctor told me I had MS and didn’t even try to soften the blow. Like you I burst into tears even though I had been panicking it might be something much worse. Then they sprang a lumbar puncture on me while I was still in shock. My symptoms at the time were slurred speech and I was unable to write properly and I hadn’t had anything else previously so my family all thought I had had a stroke or something. The next morning a neuro came to see me and told me the ward doctor had jumped the gun and it wasn’t MS unless I had further symptoms but of course you have already had those so, sorry, but it does seem the most likely outcome for you.

It may be several weeks before you get to see the neuro as they have very long waiting lists and MS isn’t a very urgent condition. When you do get to see one they will probably do some fairly basic tests to see how your nerves have recovered for example they test the soles of your feet and possible the pin-pricks along the spine. They may also get you to walk a straight line and stand still with your eyes closed to check your balance. They may order further tests such as a lumbar puncture and visual evoked potentials (I think that’s what they’re called, I never had them) to help confirm the diagnosis. They should also refer you to a MS nurse so you have a point of contact for any daily queries as many of us don’t get to see our neuros very often and refer to the nurse for most problems/questions. You may be eligible for DMDs so it might be a good idea to start researching them on the msdecisions website to get an idea of what they are and you might want to make a list of any lingering symptoms so you can ask about medications that can help with them.

To answer your question about symptoms, they do all sound typical of MS. Hopefully they are fairly mild as they hadn’t caused you to rush back to your GP. I think most of us live with odd symptoms like these in between relapses and they are just some of the odd things about MS that we learn to live with along with the fatigue. However we also lead fairly active lives, many of us still work, take holidays, have social lives etc.

Take care

Tracey x

Hi Kaz

Sorry that you had to get your diagnosis in that way… I’m new and waiting diagnosis so sorry I havent got any advice to give you just wanted to show my support

Have a good day

mittens:)

Hello Kaz and welcome Sorry to hear of all that you have been through. Sometimes the neuro’s may order a Lumbar Puncture but this isn’t always necessary as it could come back as Positive but Not mean you have MS. A lot of neuro’s don’t do them. You could have nerve conduction tests, VEP, EEG… Neuro’s also like to know your history Which is very important, so make a list of things that HavE happened to you, the worst being the first? Also when Your first symptoms happened. Hope this helps and I wish you all good wishes. Janet x

Thank you Janet :slight_smile:

I have started a notebook with my history and detailing my current ‘relapse’ (if it is one).

I am hopeful they will do an upper spine scan this time as I have not had one before, and I have been reading that the odd ‘buzzing’ sensation I have had on and off for years can be caused by lesions on cervical spine rather than the brain.

I’m sure I have months of waiting ahead of me, but hope my neuro appt won’t be too long away x

Thank you Janet :slight_smile:

I have started a notebook with my history and detailing my current ‘relapse’ (if it is one).

I am hopeful they will do an upper spine scan this time as I have not had one before, and I have been reading that the odd ‘buzzing’ sensation I have had on and off for years can be caused by lesions on cervical spine rather than the brain.

I’m sure I have months of waiting ahead of me, but hope my neuro appt won’t be too long away x

Hi mittens :slight_smile: Thank you for your lovely reply.

I’m still waiting for confirmation of diagnosis but at least it’s a start. I hope you get yours soon. Good new or bad I think the waiting is worse than the outcome! xx

Hi mittens :slight_smile: Thank you for your lovely reply.

I’m still waiting for confirmation of diagnosis but at least it’s a start. I hope you get yours soon. Good new or bad I think the waiting is worse than the outcome! xx

hi kaz.not nice but i suppose no way is nice.it may be life changing but at least you have answers and you can face it now.my friend has had m’s for 14 years and walks better than me,no wheelchair.stay positive.tx

Thank you Elmo (and everyone else)!

I saw my GP on Tuesday. She has sent neuro referral so I should get a call soon to make an appointment, although I realise this will probably be weeks off yet. Have to start somewhere!

My current ‘episode’ is still in full swing. My sensation hasn’t improved at all, I’ve develeped some occassional back & leg pain and leg weakness, and I’m constantly exhausted. For a couple of days I have also had sore skin on my upper back and shoulders, as if sunburned. Is this MS related?? Hopefully, though, the steroids I took will have prevented any further deterioration.

I gather I just have to wait for this to pass and hopfully return to normal?? Typically how long do you all find your relapses take to pass? (I realise this may be a how long is a piece of string question!)

I have a nasty chest infection now, which is not helpful, but hopefully antibiotics started today will put paid to that sharpish. Ironically I’m sure I picked it up whilst on CDU last week as both the staff nurse and health care assistant had colds when I was there!

Hope you’re all doing OK xxx

This ‘episode’ is resolving itself. The feeling in my legs has improved a lot. My feet are still tingly, I’m still getting a ‘buzzing’ sensation and I’m soooo tired! But I’m delighted that there has been some improvement. Last week I was given a Neuro appointment on 25th June, but I got a call today offering me an appt on the 16th which is great. Hopefully I’ll know more about what is happening to me soon x