@Catedd 

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Catedd

Possible MS

Hello, 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. Cat
@Aliga

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

@d1zzy

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🤞