In June this year I had a fever that knocked me off my feet literally! I woke up one morning and couldn’t feel my legs, I was admitted to hospital with what they thought was Guillian Barre. During my time in hospital I had a lumber puncture which come back clear and was discharged. Every single day since that episode I have had pins and needles in my arms hands legs and feet! My hands are constantly going completely numb and I have on occasions lost the use of my left side. I have extreme headaches behind my left eye and feel panicked when driving as I feel things are closing in on me! My balance is unsteady and I am literally exhausted everyday.
I have had a nerve test which didn’t show anything too severe but the neurologist suggested if symptoms continued to go for an MRI. The results have come back from the MRI as clear!
I am in limbo with no diagnosis I don’t know what to think, the doctor has said she thinks it is and I’m being referred back to a neurologist but if every test has come back clear how can this be?
Hi Sam, this is just how it was for me.
My symptoms were very PPMS like. I was tripping up, falling, having spasms and stiffness in my legs, and my bladder and bowels were misbehaving.
I had 4 MRIs, 2 LPs, 2 EMGs, a VEP test, plus oodles of blood tests.
Loads of things were ruled out. My mobility worsened rapidly and I needed a wheelchair not long after.
Yet no test proved MS.
Some years later, I was diagnosed with 95% PPMS.
Then a few more years after that, I was diagnosed with HSP…hereditary spastic paraplegia. This hasnt yet been proven, but I am awaiting the results of a genetic blood test.
I think all you can do is keep going for your appointments and tests.
It sucks I know!
Thank you so much for your reply!
it is comforting to know that people like yourself have been through this and are so helpful! Can I ask how long your diagnosis has been going on for and how quickly you required a wheelchair? I feel like all I am doing is moaning and now all of the results have come back clear people are questioning how much pain I am in! I am not exaggerating the pins and needles and tingling are all day every day but now I’m getting used to it I feel like I should just get on with it but it bothers me not knowing for definate what it is. My doctor has said that she cannot think of anything else
I can’t imagine what it must feel like to have experienced all that you have and to have had clear tests, so no diagnosis of anything as yet.
It sounds to me like you have something, maybe not MS, given your clear MRI and clear LP, but it’s not imaginary. And of course it’s possible for it still to be MS.
But, it also sounds like you have a fight on your hands, in order to get further tests done and to get anywhere with your doctors. All I can say is that it’s clear you have something that’s not right and in order to have further tests you need a doctor on your side which it appears you have. So keep going, get your referral back to neurology and stay strong. Eventually you’ll get to the bottom of what’s going wrong in your body.
Just to clarify, incase I didn’t make it clear…I don’t have MS and HSP.
So to answer your questions…
I needed a wheelchair for outings, about a year after the falls began. I’ve been a full-time user for around 13 years I think.
I was diagnosed with HSP in 2011.
I was offered genetic testing back then, but didn’t want more testing and waiting for results. It has taken me 5 years to decide I want it now.
It isn’t a clear cut test. There are about 60+ genes which mutate and cause HSP. It can give a false negative. It is quite a rare condition,
with just 3 in 100,000 getting it .
First thing you have to think of is that MS is rarely diagnosed on the basis of one test.
Next, you have to allow for the fact that not all NHS MRI scanners are as powerful as they need to be to pick up small/deep lesions - so all there really is to go on is the LP.
and see how the formal Dx process is supposed to happen.
Read Sue’s post (#4) and accept that you have a bit of a fight coming on. Do not give up …
The biggest problem is that everyone’s symptoms are different, and there are a number of conditions that are very similar to MS, and that the medical professions are very good at taking one symptom and diagnosing from that.
Of course you may not have MS (but many of us would find your symptoms familiar.
Have you had a full physical neurological examination?
This takes about 30-40 minutes (private) and about 20 (NHS) and will establish if there is anything wrong with the spinal cord.
It is simple (but a bit tedious) and while (say) I could do it, you need a neurologist to interpret the results.
One way of getting a quick answer is by doing some research to find out where your nearest MS specialist is and where he/she has a private practice and then seeing them privately.
OK, so this will cost (maybe £200 or so) but most neuros will then refer you to themselves at their NHS hospital (a quick way of getting into the system). A private MRI may use a more powerful scanner (and cost again).
I went down the private route to cut down the waiting time for an NHS appointment.