Last reply 2 months ago
Possible MS

I’m new on here and seeking some advice/reassurance. Before I go any further let me state I have not been diagnosed with MS, this has only been mentioned as a possibility.
I have had numbness in my left side on and off (mainly arm and leg) for the past 18 years. I had a scan in 2002 that revealed ‘white spots on the right side of the brain’ but the neurologist at the time said this was nothing to worry about and was normal for some people. In 2013 a few months after my second child was born I started with the numbness and tingling once again in my left side, slightly worst than on previous occasions, I also had a bad bout of conjunctivitis at the same time. The GP referred me back to another consultant who was brilliant and once again sent me for another MRI- this time of the brain and spine. Both came back normal, which I was obviously relieved about and he mentioned it could be a viral infection causing the symptoms. I have carried on with the odd bit of tingling/numbness from time to time but just have just got used to it to be honest.
In October last year I started to have dizzy spells-they seemed to appear from nowhere-the first one came on suddenly when I was chilling out one Saturday morning. To cut a long story short they tested blood pressure/heart and decided to insert a loop monitor as I have quite a low resting heart rate and they want to keep an eye on that. This was inserted in January and everything is fine with the ticker-good news!
So that leads me to three weeks ago- the tingling and numbness has appeared once again with a vengeance in the left arm and leg, this time accompanied by pain in the lower back and down the back of my bum and leg. At first I ignored it but after not sleeping I went to the GP who decided to refer me back to the neurologist (again!!). I received the letter to make my NHS appointment online and thought there was some mistake when told the first appointment available is December! After calling I have been informed that there is no mistake and that is the correct waiting time. Over the past few days the tingling and numbness and pain has got even worst, I’m not sleeping at all with it and now I’ve started once again with a bad bout of conjunctivitis.
I guess what I’m hoping to get from posting all of this on here is to find out if anybody has gone through something similar and did you finally receive a diagnosis? Has anybody had to wait so long to see a consultant? I sometimes feel like I’m going a little bit mad but the symptoms are very real and its so frustrating not knowing what it is or how to treat it.
It might be worth mentioning I have endometriosis but doctors have said it would not cause any of the symptoms I have.
Apologies for the rant, I have never posted on any forums before and after reading a few posts on here it seems like a very supportive place. I would appreciate any feedback.

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2 months ago

Hi @catedd & welcome. This is a great site to ask questions, chat, have a rant etc as we all understand.
I have just read your post with great interest, as it mirrors my own experience in many ways, including the loop recorder & the sciatica (which led to back surgery, in my case).
I was diagnosed with RRMS in 2016 following many years of mris & tests. Hang in there – being in limbo land & not knowing quite what’s wrong is a horrible place to be, but hopefully your neurologist will find out what is causing your symptoms, when you get to see him/her. In the meantime keep a symptom diary so that they can see exactly what you’ve been experiencing & how long it has lasted. This type of history can be extremely helpful, particularly if your memory is as poor as mine!
Take care & ask anything, any time. Aliga x

2 months ago

Hello @catedd
Welcome to shift- it’s a great place for a rant, and there’s no need for apologies! I haven’t had such a long journey as you, but am now coming up to 5 years since my first symptoms and investigations, and am still waiting for a diagnosis. I also started with ‘white spots’ showing on a scan but then things levelled out for a while until a year ago when the numbness and balance problems got much worse. MRIs and LP have all happened in the last year, but it has been slow and frustrating. The advice and support on here has been invaluable, and I am trying to excercise more ( not easy on the days when I can’t stand up!), eat healthily, rest and avoid stress. My next appointment is a month away, and I really hope it will finally bring some answers. What ever happens, I think there will be someone on here who will get it and offer advice, reassurance or even a laugh! I know that sounds daft but so many people here have gone through similar situations and have great insights and different perspectives to share. I hope this helps, and that you can talk to your GP about getting an earlier appointment.

Good luck🤞

2 months ago

Thank you for your replies. I really appreciate it. It’s good to hear that people have been in similar situations. I’m trying to stay positive and carry on as normal but it’s nice to know I can come on here for advice and support.
D1zzy I hope you get some answers in a months time.
Aliga so interesting that you also had the loop monitor- quick question, can you have an mri with a loop in? I’ve heard conflicting info. Thanks for the advice on the diary. this sounds like a good idea.
Hope you both have lovely weekend. X

2 months ago

@catedd do speak to your GP about getting an urgent referral. If you don’t have any joy, consider going private. I’m lucky enough to have health insurance provided by my employer. My initial neuro consultation appointment was £200 but I was able to see someone within 2 months – NHS waiting list in NI is 2 years! My insurance also paid for an MRI of my brain and whole spine, it was around £900. The consultant has now transferred me into his NHS service so no more paying for tests or treatment. Wishing you the best of luck x

2 months ago

Hi @catedd and welcome.

You’re not alone, marooned in the pre-diagnostic phase. Neurological conditions are notoriously difficult to pin down, involving a lot of discounting conditions that it isn’t! We’re just complex pieces of machinery, Doctors aren’t magicians and their tests might not show a complete picture.

Now, I’m not medical, just been plagued with MS for more years than I care to recall. Now, the numbness would seem to be a neurological symptom of some auto-immune condition. But, the Conjunctivitis is not, being caused by bacterial or viral infections. Apparently it can also be caused by some STIs, but I can’t see how that works. 🤔

But, as Conjunctivitis is caused by an infection, it would activate your immune system, which in turn could trigger the numbness. The numbness would potentially recover once the Conjunctivitis is cleared.

Neurological conditions don’t directly cause physical pain. So, the lower back pain doesn’t quite fit either. But, was a bladder/kidney infection ruled out? Once again, an infection could be behind the numbness appearing again at this time.

You’ve had a couple of good suggestions already. The symptom diary is a must. And, if finances permit, a private consultation would overcome the horrendous wait.

As for the Loop Recorder and the MRI, the following seems official advice :-

But, do let the scanner operators know when you get there.

2 months ago

Hi again @catedd. The advice that @stumbler has posted re loop recorders, is exactly the same advice that was printed on my device’s information booklet. Make sure that you do a download before you head to the hospital. In my case I had to download & then ring the unit in the hospital to advise that it was downloaded due to going for an Mri rather than having a recordable ‘incident’. I had 3 or 4 mris while the recorder was in situ with no problems, but always tell the clinician that it’s there. (I actually phoned the mri unit in advance to see if they required any specific info & they asked me to scan & email the page relating to scans from device’s own information booklet. The cardiac unit supplied me with this).
My back problems were/are totally separate to MS. I damaged a couple of discs in my teens & it eventually caught up with me in a big way – unrelated to the neurological issues though.
As the others have advised, 8 months seems to be a very long wait for your appointment. Perhaps your gp could speed it up for you, or a private appointment, if circumstances permit. The neurological units are horrendously busy though & whilst undiagnosed I waited for 20 months for a 2 month recall appointment.
I’d just reiterate the importance of keeping a symptom diary & you can keep your own, or find various samples online. You have the right attitude in keeping going & staying positive, during what is a very frustrating time. It’s been good to chat – take care x

2 months ago

Hi, having read your post it’s almost identical to my story. I had an issue with numbness back 14 yrs ago, had MRI and ms was mentioned as a possibility and I was sent on my merry way. I had an appt with neurologist for what I thought was carpol tunnel which was 8 months away. Looking back it’s all MS linked. Over the years since then I’ve had periods with general bits of numbness and pins and needles. Last November the dizziness started which just got worse, then the numbness and pain mainly down the right side. Eventually I couldn’t use my right leg to walk and toilet issues. Burning and freezing feet, After various visits to the drs I eventually just broke down in floods of tears to my gp. She sent me to A&E….long story short, they kept me in, MRI, lumber puncture, steroids and I’m back 90% to my old self and now diagnosed. Don’t give up on pestering your GP. It’s all very real and distressing. Good luck xx

2 months ago

Thanks for your advice, everyone, its all really helpful. Numbness been annoying me all weekend and I don’t want to harp on about it to the hubby so just end up keeping quiet and going silently mad!! Sometimes I think I don’t want to find out as I’m not sure how I would cope if I was diagnosed. I wonder if not knowing is better?? However its like there is a dark cloud always hanging over me and I’m not sure this will ever go without knowing what it is. Did anyone else feel like this?
I realise there are people on here that are in a much worst position than I am and I from what I have read you are all so positive and the support for one another is amazing. I need to keep this in mind when I’m feeling negative!

2 months ago

@catedd , this is a problem facing you and your family. Whether there are others in a worse situation or better is immaterial. You’re presently walking around lost in limboland. It’s akin to suspended animation.

You do need to hear the formal position regarding your health. Then, you can place a stake in the sand and work out how best to move forwards. That’s not only you moving forward. but your family moving forward too. Just as you may need some family support, your family will need your support to help their understanding.

We understand why our members unburden themselves on the Forum. It’s because we understand this condition and know that a problem shared is a problem halved.

2 months ago

Thanks @stumbler. I have taken the bull by the horns and phoned up in regards to going private this morning. Decided I can’t live in limbo land until December. They are calling me back tomorrow morning. Will keep you posted. x

2 months ago

@catedd , well done. Yes, stay in touch, we’ll be here to hold your hand all the way.

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