I have been reading this forum for a little while and wanted to thank everyone who posts their experiences as it makes me feel less alone.
I am currently waiting the hospital to ring with an MRI appointment as my consultant rang me on Friday to say a recent nerve conduction study was clear and she wanted the MRI done within 2 weeks. I was referred to her initially because my GP thought my numb hands could be ulna nerve damage but this has turned out not to be the case.
I have a lot of other symptoms, problems with walking, pain, severe fatigue, falling over, dropping things etc but there are 2 things complicating everything. The 1st is I have a congenital bone disease, screwed joints in my feet so it hurts to walk anyway. Also last year I survived a brain haemorrhage and have been left with balance problems, weakness in my right side and severe fatigue. So you can see how it is all getting confused. Now the neuro consultant is saying she is sure this is either a trapped nerve in my neck but as she was previously sure it was ulna nerve damage I am trying to prepare myself for it not being that. I am also preparing myself that the MRI might be clear in which case all these symptoms will be put down to post haemorrhage stuff.
I am already on gabapentine for pain management and amatriptyline at night to help me sleep and prevent migraines as I now get horrific migraines that have landed me in hospital twice. I know this is a stupid question but the tablets won’t affect the results will they? I almost want it to be MS so I can understand it better. I am defintly noticing periods of more severe symptoms and others with hardly anything at all. My post haemorrhage stuff is constant and so easier for me to work with and monitor if it gets worse. If the problem isn’t MS then I find the idea of random symptoms coming and going for no reason much more difficult to deal with. Plus I struggle to explain symptoms or remember how long a problem has been happening, I am starting to struggle with all the questions I keep asking.
Anyway, this is a bit epic. I think I am so anxious waiting for the phone to ring and dreading it too. They needed to confirm I can even have an MRI as I had brain surgery to clip the anuyrism and if the metal isn’t compatible it could kill me. Otherwise it is a lumber puncture which I am terrified of and also very reluctant to have done because of my back and bone disease stuff.
OK I will shut up now. Congratulations if you made it to the end!
I meant to add the reason I came here and am considering MS is partly because I have a lot of neuro symptoms and partly because the consultant asked me a lot of questions about balance, bladder and bowel continence, grip, vision, falls and they are all things that the MS Society have information about.
My last CT scan last September so I guess that is enough time for anything MS related to show up in an MRI now?
OMG that is one hell of alot of stuff to contend with.
That is limbo done epic style,but well done you for coping with it all so far.
To say you are relieved when you get an ms dx sounds strange to others but we get it as it means an end to limbo and the path to managing the effects opens up.
Many of us can empathise with memory problems and I guess by now you have coping strategies in place…but it doesnt make it any easier I know.
I do hope they find a way to get a dx for you, as it must all be very emotionally draining for you.Have you got family/friends to help you day to day?
All I can suggest on a practical note is to keep a symptom diary so you have got the information to hand when you see the neuro.
My husband and friends are amazingly supportive, I am very lucky in that respect.
I am just coming to the end of rehab for the brain haem next month and I have been blessed with a really good team who have helped me in all sorts of ways. I was just thinking a symptom diary wold be good. When the issues with my hands first started my physio said to write down when it happened and for how long for a couple of weeks so we could see if there was any pattern. When we looked back I said I would have told her incorrectly how often the symptoms were happening etc if I just went on my memory alone.
I have a very definite sense that I suddenly get a lot worse and several symptoms come back at once but I need to be more concrete about that for the consultants I guess.
This forum seems really lovely and supportive. I am struck by how many times I have read other peoples stories and they have been so familiar. I am really glad to have found it and to even have words like ‘limbo land’ that you all understand!
One of my early symptoms (I’m undiagnosed as yet) was neck problems and pins and needles and numbness in my hand. They thought it was ulnar entrapment too - even went to physio. Then I had another episode of symptoms which prompted neuro referral. So you’re right sometimes things are mis-diagnosed.
It sounds like you’ve had so much to deal with; one condition is bad enough but multiple!
The diagnostic journey for MS is not an easy one - some people are undiagnosed for many years, others get a quick diagnosis. Sometimes there is another more logical reason for symptoms ; anemia, vitamin deficiencies, auto-immune stuff. With your other issues it may be more difficult to unravel whats related to what but at least the neuro is trying to get to the bottom of things.
The symptom diary is a good suggestion particualrly if your memeories not great it will remind you wahats happened and help you keep the neuro better informed of whats happening to you.
I usually say try not to worry or panic at bthis point but after everything you’ve been through I’m suprised you’re holding it all together. Hats off to you.
So instead I’ll say hang in there and I really hope you get answers soon.
Just wanted to wish you luck on your journey and to tell you that CT scans are rubbish at showing up MS lesions so a clear CT doesn’t mean very much and that you don’t need to have a lumbar puncture (LP) to get a diagnosis so if they can’t be completely confident that the LP wouldn’t harm your back in any way, you don’t need to have one.
I work hard on keeping it together but surviving the haem changed me a lot, I’m more generally chilled out I think. I even meditate and stuff I still don’t like not knowing stuff, not being able to control stuff or waiting though!
