Well I’ve been on this forum for just over two years and my story started nearly 3 years ago. I’ve moved neuro’s because of bad ones and doctors leaving. My current MS neuro felt it was MS even though I had non-specific lesions and in nov booked me in to have repeat MRI / LP and bloods and EVP. We also talked about DMD’s as he felt if the evidence was there to support it I would be eligible after having had two episodes within 6 months of each other.
Now I had a letter through from the neuro saying all my tests are negative - don’t know if this means my previous lesions have disappeared too.
He said that ’ as we do not have any surrogate evidence of central demyelination a diagnosis can not be made at this time’.
I have a review on the 6th of feb and have no idea where we are going to go from here. It’s what I was really scared about. Do I just stay in limbo. The hardest thing is I feel great at the mo I’ve got all the lost sensation in my privates back everything else is gone bar bowels still not being 100% but it’s like a 3 out of 10 on the scale of how much it’s impacting me at present. I should be happy and I am - but I’ve been there before last year when I’d recoevered from my last hit of neuro symptoms and was optomistic thinking that maybe it was just one of those things and I’ll never have anything new happen again. Then I got hit with lassitude for 3months recovered then later on in the year the current episode I’ve just recovered from.
I guess I worry they won’t get to the bottom of whats going on or the neuro will say it’s all negative so discharge. My parents have just said see everythings fine you should just get discharged - stop picking at a healed scab. But they don’t understand that just becuase I’m feeling better right now doesn’t mean I’m back to normal - as I said above, I fell into that trap before of thinking it’ll all just go.
It’s hard seeing other people getting a diagnosis too - which sounds bad - I don’t want to have MS. I just want to know what is wrong with my body and get the right diagnosis so I can get the right help when things happen and know what to expect for the future.
Keep your fingers crossed for me that the 6th goes ok and that the neuro has some good suggestions of where to go from here now.
Sorry about the rant
Hi Polar Bear
I’ve been tested for all the usual suspects (vitamins /iron/ ace/ thyroid/ lupus etc etc) and everything was fine bar my vit D - which is supposedly back to normal now according to the GP. The neuro still advised me last visit to take vit D supplements due to the link between MS and vit D as he suspected MS.
Unless it’s something genetic or wierd and wonderful I’m scratching my head.
Gokr - I feel your pain. It’s horrible being in a situation where you are suffering symptoms but have no explanation, and seemingly no hope of one. Sending (((hugs)))
I was just thinking about you last night wondering how you were getting on.
I know you should be jumping for joy that all the tests are negative, but its hard when you’re still feeling bad, and waiting for it all to happen again. I had years and years and years of it.
Wait and see what’s said at the review. Ask what they think is causing the symptoms, and where you go from here.
Can you take someone with you? If they discharge you, you need to know who/where to go if things flare up again.
Best of luck Reemz
sorry you did not get any answers, its the pits, I can sympathise with you being in the same position. Whats hard is that my younger sister is showing symptoms too and she is 14 yrs younger than me. Its scary whats happen to us.
Hi, I feel your pain.
I was in limbo for years and then mis-diagnosed for some more.
But my neuro before the last one, said they wont discharge me, but continue to support me. Hope the feeling is the same in May, when I go back.
I had test/mri after test/mri and nowt ever proved anything…except what I didnt have!
Good luck for Feb`s visit.
Hi Reemz, I’m in a similar position. From what my neuro said, my ‘clear’ MRI suggests Functional Neurological Disorder. I now have to wait until 17th Feb to discuss my results with a GP. Have a look at www.neurosymptoms.org and feel free to PM me xx
Reemz & Reiki - good luck with your next appointments in Feb, you must both be feeling pretty frustrated right now
Thanks for all the support guys I really appreciate it. I know I should be prepared for not getting answers - I mean I’ve read about so many others going through the same. Poll I admire how strong you are after being pushed from pillar to post with varying diagnosis. I hope I’m as strong as you. Good luck to you too Reiki.
Oh Reemz, how frustrating!
On the one hand, it’s good that your lesions ‘may’ have gone, but on the other I know what it’s like to be in limbo (especially when others find it easier to believe that there’s nothing wrong).
I really hope that you get some answers when you have your follow up, and that they’ll at least continue to monitor you.
I know you’ve had your vits tested, but with B12 especially, it has to be the right test (a lot of them only look at your red blood cells (which can be boosted by supplements or are added to foods) and not the ‘intrinsic factor’ (that you actually need to metabolise it). It can cause all sort of neuro symptoms and lead to permanent damage (pernicious anaemia). An easy way to check is to but a supplement in sublingual (under the tongue) form or patch, as these bypass the stomach (where the intrinsic factor comes into play). I may be clutching at straws but it’s got to be worth a try…
Please let us know what happens eh?
For sure, it is frustrating. Sometimes the immediate desire to get a dx of something, anything(!), can make the idea of bad news feel strangely attractive - particularly when you have psyched yourself up to hear it. But getting bad news is a bad, bad way to relieve uncertainty! It is good news that you do not definitely have MS. It means that there is still hope that whatever is the matter with you will get better. Try not to be downhearted or deflated by this news. All will become clear in time, one way or another. For now, you are still in the game, and that has to be good, even if it does not really feel like it. Getting an MS dx might relieve one kind of immediate uncertainty, but it opens the door to a whole new filtered word-ing world of uncertainty - for life! (I really do not recommend it.)
I defo don’t want to get diagnosed with something that I don’t have - it’s why I’d held off LP/EVP up till now even though I have been under various neuros forn the last two years. I’m open to the idea of other possible causes too but the neuros I’ve seen so far have been quite convinced its MS when I’ve asked could this be anything else.
As you say it is a waiting game like it or not. It’s frustrating because when I’m well I am very well ‘normal’ and then when something happens it’s such a contrast and the worst is trying to get help when I need it. I’m thankfully no where near as bad as some people but last year I had bowel issues/ hug from under bra strap down to waist band on left loss of sensation down there and down one leg. I saw the GP because the hug was so painful that my skin was sensitive and even my clothes or lying down with the bed touching was excrutiating and as my father has crohns I didn’t want to presume that everything was neuro (I almost carted myself to A&E one night I was in so much pain). The GP wouldn’t give me anything for the hug or neuro pain and said it was all IBS and to take over the counter IBS relief and read up on fodmaps. I was almost in tears - was fine with the IBS thing but the hug wasn’t caused by IBS.
I guess I have to tackle this when we get there but it’s difficult as without a diagnosis the GP has no clue and is just very rerluctant to give me much.
Just hope I remain symptom free again for a long-time now I’m pretty much recovered.
Hi Reemz just checked in to see how you were. Sorry nothing was found. I know how you feel about how hard it is seeing other people getting a diagnosis as you just want to get a diagnosis. I’ve been told I can have an lp/vep but now think ms unlikely as mri clear and no explanation for symptoms and the fact that I can’t walk for more than about quarter of a mile before my legs start getting tired weak and giving way is ignored seemingly. I have no follow up until June so can relate. Take care Ax
i feel your pain i was at sea when 1st noticed something wrong that was 14yrs ago now & Jan 2014
yes this year i got my DX hang in there & i hope all comes good for you & soon
my story sounds very familar when i went private and explained evrything,my neuro talked about two treatments to help me,i went through all the tests,with perventricular lesions,and sadly my tests and lp showed negative,and then i was kept on sent for behavioral treatment,and left dangling with a soma disoreder,which then wnet on to be fibromyaligia,and now i battle away with vertigo and contined back problems which when severe i nearly fall to the floor like wieth bearing sensations,i suffer still burning tingling ants crawling,in my face hands and feet,ms hug attacks,and blurry vision effecting my eye muscles now,my neuro left open i could go back,but i put everything on the back burner a while as so stressful,and the moment my mum is seriouly pourly with cancer,we don’t have too long,i will ask to go back soon,as i continue to suffer,i am lucky i think that gabapentin and pregabalin are there to me going,and diazpam helps when my back is severe along with co coadamol,i wish you luck,and don’t give up,keep pushing ,thinking of you love boz xx