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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

Apologies for duplicate post - not sure how that happened and I can’t see how to remove x

Hi Kaz

This has all been happening to me , even the being taken in for cauda equina last oct having the scan being given the all clear but that was it no diagnoses it was like we thought it was cauda equina it isnt goodbye that was it .

It’s good you got the diagnoses.

Hi Kaz and welcome…

Sorry to hear you have had such a hard time and now have to deal with the possibility of MS.

It does sound like the doctor was pretty sure, and your symptoms do seem very MS-like… but at this point I would suggest you remain open minded. It’s not a diagnosis yet and there are many, many conditions that cause symptoms similar to MS. So it still might turn out to be something different.

You will no doubt get an appointment with a neurologist. They will ask lots of questions about your health history and your current symptoms, may want to do another MRI to see if anything is showing yet, and may want to do a lumbar puncture where they take a small amount of spinal fluid from the base of your spine to see if it shows signs of MS. They will also give you a physical examination to see how your muscles are reacting, your balance etc.

So quite a way to go yet I think.

It is frustrating waiting I know. There isn’t any single test for MS and they have to put various bit of evidence together before they can dx. These are usually lesions (scars) showing on MRI, positive LP result and of course your symptoms. It’s like putting a puzzle together to find all the right pieces to dx. So it can take quite a time to get there.

In the meantime, remember that MS certainly is not the end of the world. Far from it! People with MS usually are able to continue to work and still have relationships, sex, babies, travel, drive, etc etc… so although MS will change your life it does not mean the end of your life.

This is a great forum to be on. Everyone here understands and can support you during this process and if you get a definite dx.

For now, try to rest as much as possible. It’s a bit of a catch 22… stress is bad for MS but naturally while you are waiting it is stressful. Try to find ways to lower your stress levels.

Hope this helps hon and hope you get some definite answers soon.

Pat x

Thank you for your reply :slight_smile: I’m still awaiting further tests to try and confirm the diagnosis but they seem fairly confident. I’m sorry you still haven’t been diagnosed. Afre you seeing a neurologist? xx

Thank you for your reply :slight_smile: I’m still awaiting further tests to try and confirm the diagnosis but they seem fairly confident. I’m sorry you still haven’t been diagnosed. Afre you seeing a neurologist? xx

Hi Pat.

Thank you so much for your lovely and very helpful reply.

I had been wondering about the stress factor. I’m going through a very stressful personal time at the moment and doing my best to remain calm. I am very tired most of the time, so trying to rest as much as possible. Not always easy with a highly active 3 year old :wink: But I have a brilliant partner and amazing stepdaughter to help out, so I’ll get there.

Thanks again x

Kas I am dx… over 5 years now!

Pat x

Hi Kaz

Iam seeing a nurologist on 29 th may a new one so hopefuly they can get to the bottom of it x

Hi again Kaz… I’m just bumping this post up to the top as it got posted twice and the other post now looks like it didn’t have answers.

Hope this makes sense!

Pat x

I hope so :slight_smile: Good luck!! xxx

I hope so :slight_smile: Good luck!! xxx

Thank you :slight_smile: x

Thank you :slight_smile: x