Hi Sue. Yes, without a doubt this has been the most stressful and challenging time of my life.
I am fortunate still to have a head full of hair but it wouldn’t surprise me if this ignites a reduction. I will say this now, if I come through this, big changes will be happening in my life.
Probably you will crucify me for being stupid but I don’t feel worried about MS. I’m not sure my symptoms really add up to that and being honest, I feel fairly confident on that score. But obviously will have to wait for the results. However, I am not confident about being clear of MND and feel what I am presenting sounds more like that disease than MS. My only reserve hope is the fact my foot is a good deal better than when this first happened. I had difficulty even getting my shoes and socks off at first and was getting it caught all the time when walking and nearly tripping. This is not happening anymore, so I guess it has to be viewed positively. It just will not get better though and not had any significant improvement for around a fortnight.
Went to see a physio last night and she said a compressed nerve can take ‘months and months’ to sort itself out so that also provided me with a bit more reassurance, but only small. GP said the reception at the hospital expect the letter from the neuro to arrive tomorrow so that’s also in the pipeline just now.
The plot continues to get more bizarre. Got a call from my local NHS hospital to advise I have been referred for physio by my GP after being diagnosed with ‘foot drop’. First appointment is on December 4th. This would appear to be on the advice of neurology though my GP has not called to confirm this, nor with any MRI updates. All the info they had was ‘foot drop’. They had not been made aware of why I had suffered this, did not know about my MRI and generally did not know anything about my condition/history. Unsure as to what is going on. When I left the neurology building over 2 weeks ago, the plan seemed to be for an EMG referral to check the nerve damage with an MRI referral unlikely. Instead, 2 days later I get a call for an MRI and now a referral for physio, with seemingly no plans as yet for the anticipated EMG. Difficult to know what to make of it all.
Hello. Finally can report some good news. After approximately 9-10 weeks, my right foot has finally, finally shown some significant signs of improvement. Felt it first on Sunday night but wanted to make sure I wasn’t imagining it. I can now just about walk on my heels and can lift the foot much better than before. The difference is night and day from 9 weeks ago.
I can accept now that it’s not motor neurone disease that caused this. Simply it would not improve so much. It does look like it’s just been a compressed nerve from sitting awkwardly. Which sounds ridiculous given the stress it’s caused me and some of the thoughts I have been having. It’s probably 80% better and the GP has said that the kind of improvement he sees would be unusual for an MS patient too. Still awaiting MRI results to confirm these thoughts, but just feeling so much better about it all. Finally. I will likely be returning to work on Monday now and try to resume a bit of normality. Neil x
Hi Sue - thanks again for your kind words. I am cautious about being too ‘celebratory’ until I get the MRI results, but my greater concern this whole time has been MND. Simply due to the position of the injury and the seemingly inexplicable nature. I could not convince myself that sitting awkwardly could cause such extreme damage. The improvement was so drastic and so sudden, having felt absolutely nothing for weeks. I actually posted my story on an MND forum too because I am guessing there must be other people with a trapped/compressed nerve who worry about the same things I have. It’s just so difficult to comprehend when a doctor tells you on one hand ‘it could be MND or MS’, serious conditions, and then on the other hand it could be something so trivial in comparison like a compressed nerve which will heal itself and all the stress/worry would be for nothing. This is a life-changing event for me. Its taught me how much I take my health for granted when there are less fortunate people suffering. The stuff I used to stress about and thought were important to me are actually trivial compared to what I felt when I was at the peak of my anxiety. This forum has been great and I will stick around. Hopefully my next contribution will be news of a clear MRI. Fingers crossed. I should say, I did test ‘weakly positive’ for ANA which could potentially indicate some kind of autoimmune deficiency. The GP does not seem all that concerned about it, so am not sure whether I should look to chase that up or not. I have struggled with fatigue for a number of years and wonder if perhaps this test could potentially help the doctors identify a potential cause. I feel like I’ve troubled them enough but got a feeling this might nag away at me once the euphoria settles down.
Before my diagnosis in Feb 16 my biggest symptom had been fatigue on a level I had never experienced before. I had loads of tests which basically didn’t show up anything that couldn’t be ruled out. But then a colleague at work (I work in the NHS and it was one of the doctors) mentioned that I had a limp (which turned out to be foot drop) and I mentioned that the right hand side of me kept going a bit numb and I couldn’t figure out why. He said “you have a good set of symptoms there - you should go to your GP”.
So I did…she referred me to a neurologist and after I saw her began the MRI’s, Lumbar Puncture, FES etc. and as I said I was diagnosed in February last year. Fatigue is still the biggest thing I have to cope with, but I get twitches, areas of numbness, pain, i’ve had a feeling that a phone was vibrating inside my arm…the symptoms are wide and varied but mostly come and go of their own accord.
I think I can probably guarantee that whatever symptoms you are getting or have had - someone on here with MS either has or will have had the same thing at some point. MS really likes to keep you guessing.
Having said that it could also be an isolated occurence which when it clears up, will never happen again.
Easier said than done, but please try not to worry so much. It most certainly will not help with anything.
I wish you a really good outcome and hope that soon you can put all this behind you.
All the best
Juls
P.S. You are not troubling the doctors - that’s what they’re there for!
The scan shows nothing indicative of MS, so that’s the one piece of real positive news. The rest of it is also clear apart from a small ‘wrinkle’ on the right side of my brain. The symptoms to which I have listed would not be caused by a defect in the position that it is according to the neuro. He advised its a common thing to see on MRI’s, however he has advised it should be investigated further, though has not said how.
So, I don’t really have the closure that I wanted and not sure how concerned to be by it. I am happy it’s not MS, and relieved for that, but really had hoped this would be the end of the journey.
Hello again. I am wondering if anyone can assist me with my brain MRI results. ‘T3 - Very small white matter lesion detected on right side of temporal lobe’. Literally that’s the notes my GP has and also another sentence which states this is ‘not commensurate with the patients symptoms’. I’ve now to get a spinal MRI and then a lumbar puncture, yet my GP tells me that I can 99% rule out MS as she says these results are not indicative of MS at all and would expect some mention of demyelination if this was a serious consideration. I’m just so confused again now…
I am truly sorry for all of you who are certain they have MS and yet the clinical data proves it isn’t. You meanwhile are left dangling in limbo. With no natural home. We do understand that’s why you come back here, because we do understand the symptoms you are suffering even if as it stands there is no evidence that you share our diagnosis.
When I see the user names like yours come up Neil, I just hope you’ve been given an answer. And am really sorry that you haven’t. (I’m glad you don’t have MND though.)
i do hope the next round of tests will give you an answer. And that as you get used to living with worry, it affects you a little bit less.
Hi Sue - in fairness, I’m not ‘certain’ I have MS, in fact, I’ve posted several times to say I have my own personal doubts about it.
Also, in fairness, my brain MRI is not clear and lesions detected. Yes, the lesions are not in the most common place for MS but it’s not like the ‘clinical data’ is ruling it out as you suggest. If that was the case then I would not be getting sent for a spinal MRI and a lumbar puncture. I haven’t asked for these tests. At the moment, MS seems to be the neurologist’s chief concern as nothing else is being discussed as a possible cause and my GP is not doing anything with me until the next series of results are in. I don’t quite understand what you mean when you say ‘no evidence’. I’d argue that most people would be concerned in my position even if the odds would suggest they are favourable to me.
So the reason I am back posting here is because this is a forum to which exists to discuss the illness to which I am undergoing tests and because I am concerned about it. Which would seem fairly natural.
it would seem the MS journey has come to an end for me, which obviously I’m very pleased about as no lesions were found in my spine MRI and the 1 solitary lesion found on the brain was not MS related.
There were some abnormalities but sounds like it’s nothing too serious if the neuro is to be believed from the telephone conversation. Certainly she sees no tumours or any further MND concerns. Very happy about all this, though that’s now an abnormality in the brain and the spine and it’s kinda stopping me from feeling too celebratory. Thanks for all the kind messages and support when I was posting here. Best wishes to everyone. Neil x
I have been reading this thread with interest. Wont go through al the gory details but for 6 months have had numbness and pins and needles in left arm along with neck and shoulder pain and some strange numbness over the toes of my left foot with strange sensations that appear and disappear in other areas all over the left leg from my hip down.
GP kept saying anxiety, stress, depression as I have also been having dreadful panic attacks since August last year. Finally, in December the GP said to see a neurologist because he thought maybe TIA’s or some sort of epilepsy!?!?! Saw a chiropractor who, after two sessions said he suggested I see a neurologist as he felt there might be issues with bulging / herniated discs.
I finally got to see the neurologist on Thursday (1 Feb) who feels that I have degenerative disc disease / spondolytis which has led to cervical myelopathy but because of signs of very brisk reflexes and a few other symptoms he can’t completely rule out multiple sclerosis.
I am waiting for confirmation from the hospital for a barrage of tests on Thursday. The tests are essentially for confirmation of of the myelopathy (and hopefully exclusion of ms) but I see included VEP tests as well. It is so very easy for us to get caught up in this spiral of fear of what the test results will reveal but I am trying ti be pragmatic and know that whatever it is with the doctors help we will work on the best plan of treatment to maintain as much quality of life as possible.