I don’t have a diagnosis. Initially what took me to the dr was fatigue, as this was the one thing that was interfering with life. This got me directed to a fatigue clinic where they specialise in diagnosing chronic fatigue syndrome. I didn’t think I had that as I was aware of other symptoms less debilitating that were there and it seemed to me less likely that I had lots of different things wrong than one where they were all connected. In the autumn, I suddenly had a time of slurred speech, unable to find the right words, and was slightly drooling when I sat quietly although it wasn’t noticeable to others. I had several stabbing pains to my eye and forehead that were very painful also. Then the fatigue lifted in the new year and I was feeling well and so expected to get signed off the clinic. I mentioned the autumn symptoms and they were concerned about a possible mini stroke and asked about family. I said the only thing in the family was MS and that’s not inherited. anyway so rather than getting signed out he’s doing more tests, on heart and brain and said the ct with contrast will rule out both ms and stroke but surely it won’t will it? Then suddenly my bladder stopped working and I couldn’t empty it hardly. At this point I suddenly became convinced it’s ms. I went to the GP who has just connected me with the continence clinic and hasn’t passed it on to my ‘fatigue specialist’. So it’s all a bit confusing. So I’m just hoping that if it is MS the lesions will be big enough to show something even on a ct. So I had days where I was convinced I have MS and just wanted he docs to hurry up and confirm it, and now the fatigue has lifted, the bladder mostly settled and I think I’ve imagined the whole thing as I feel pretty fine and I must have just been overly dramatic. Anyone relate?
Hi - great name! And welcome
I had Optic Neuritis last October. I had other symptoms, but not ones I would have ever thought to bring up with my GP (stabbing pains, buzzing/vibrations, warm wet patch sensations on my legs). I had a brain MRI which showed some lesions, but not loads. The Optic Neuritis cleared up and I hoped that was it.
Then in Jan/Feb I had bladder problems. I had to go all the time, and it was almost always ‘an emergency’. I’d go, feel like I was empty, then have to go back 5 minutes later. There was a small amount of incontinence too. That cleared up after about 7 weeks or so (mostly).
My GP re-referred me back to the neuro who is sending me for an MRI of my brain and full spine which I should hear about some time soon. He said he thinks it’s ‘almost certainly’ MS which was a bit of a shock for me as I was feeling so much better.
I know exactly what you mean about swinging between being convinced and then feeling ‘dramatic’. But you know your own body, and you know when something isn’t right.
I’m not saying you do have MS, but I know exactly how you feel.
Presumably you will be seeing the fatigue specialist again soon to catch up on results of tests ordered? If that is the case, I would definitely suggest you mention to them about the bladder issues you have had, at least then you know that that information is in the system.
Sorry if none of this is very helpful, but I can definitely relate to you on how you are feeling
PG xxx
I am sorry that you are having such a worrying time. No wonder you are feeling confused, and it does not sound as if hte GP is being much help there. I really do think it would be good to get him/her liaising with the specialists at the fatigue clinic and making sure that everyone involved in your care knows the full picture. It is the GP’s job to look at the patient as a whole and keep track of the big picture and guide the patient through the maze of specialism soup that can be such a puzzle. Maybe yours is doing more behind the scenes than you know about. If all else fails, then you’ll have to do the liaison yourself, as Pandagal suggests, but you shouldn’t really have to - that’s what GPs are for.
I hope that you get some answers soon.
Alison
I too am in Limboland! I am not diagnosed…yet.
I can totally relate to how you feel, mostly I feel denial, occasionally scary certainty and I always feel like I’m being too dramatic! I tend not to talk to friends/relatives about how I am really feeling because I worry if I’m not diagnosed they will think I am a total drama queen who made the whole thing up! The only person I truely speak to is my hubby who kindly assures me I am not making this all up and am right to be scared.
It’s a horrible place to be, on the one hand your scared of diagnosis and on the other hand you want it so you can get help and move on!!.
I really hope your scans give you some answers and if not maybe you should push for a MRI scan? I dont know how good CT scans are at showing lesions, maybe someone else on here can answer you that?
Vicky
Hi,
I’ve had MS since 2000. I know how you are feeling, as my year before diagnosis was pretty similar.
What you need is an MRI scan (with contrast if necessary). A CT scan won’t show lesions. It can show possible strokes and other problems, but not lesions.
It seems very unhelpful that your GP hasn’t referred you for an MRI as this is standard practise now.
I was diagnosed very quickly after the MRI and my husband was terrified. I was really ill, but 14 years later, I’m doing very well. I haven’t progressed at all - but that issue does tend to be unpredictable with RRMS.
I hope you get some answers soon.
Best wishes
K
Thank you so much for your replies and sharing your own experiences… I agree it’s not very helpful, go just keeps sending me to different clinics for each symptom. Now have to go to continence clinic Blegh. I wasn’t going to bother as had improved but suddenly today in really bloated and can’t go again. The fatigue dr seemed to think ct with contrast would do something but like you say I think only an MRI will, though will be hoping that if something’s there there will be some sign to make them send me for MRI. I feel like I can’t tell ppl or have time off work without a diagnosis and I’m so exhausted today. Thanks for support x