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Limbo land

Hi everyone, I’ve been popping onto posts in these forums for a few months, trying to find similar stories, or understand better what’s going on with my stupid body lol I started having some peripheral nerve issues (loss of sensation in fingers and toes) around Feb last year, after a few awful migraine episodes. Id had a problem on and off over the years (about 5 years prior) with a numb hip my one side, mostly when sleeping on my side, which I strugged off as a pinched nerve and I didn’t bother me much. Anyway just before my wedding in September 2018, I noticed a patch below my tummy button going numb and around my right knee feeling ‘weird’. Everyone told me it was wedding stress lol On my honeymoon (sad face) I noticed my tummy was worse and shortly after coming back (the day after a booster vaccine for tetanus thanks to a cat bite), it all kicked off! The loss of sensation spread down from my tummy (lady parts) and above it all the way to my boobs. My feet felt squashy when I walked and the numbess in my hip returned with a vegence. Since then I have had weird tingles here and there, burning sensations and the numbess in the fingers, lower tummy and arm seem to have just gotten worse. I also had a lot of upper (neck shoulders) and lower (lumbar) back pain. I’ve been off work sick which isn’t great and been feeling really anxious and worried about it all… I already suffer with anxiety so a great combo! I have had two MRIs of my brain, one NHS, one private with contrast. Both came back as normal and both the NHS and private neuros said they weren’t overally concerned by basic examination like reflexes, gait etc. The private neuro is an MS specialist for the region and doesn’t think it’s MS… but I am strongly convinced it is. Because of how high up the symtoms go, he requested a cervical spine MRI and I’m currently waiting for the report before a follow up. To put it politely… I’m so fed up!!! It’s been a rollercoaster of emotions, worry and horrible symptoms. The main outcomes options are: It’s a spinal condition of some sort they can fix, It is MS but has only been damaging my spine thus far (which neuro thinks is very unlikely) - which is a terrifing prospect, They don’t know…this sounds nuts to me but both neuros said sometimes they just don’t know medically why these things happen (which would be hugely frustrating as theres no answer or treatment), Or something else that’s only diagnosed by elimination (like fibromyalgia). Anyway… aggghhhh… send help! [Sorry for the ramble]

Hi

I think at the moment I too am waiting, I just have got the date for my spinal tab on the 24th of this month, my doctor found some white matter changes in my head and demyelinating disease like patches from my MRI what ever that is lol so for me it’s down to the spinal tap and blood test to dx yes or no for me.

In my case the consultant brought up MS three times during my appointment I didn’t even know why I was there, I hadn’t been told anything, so I had no questions ready for him which now I do but I have to wait until April 10th to see him again, I was very puzzled what I had got as he told me nothing but that he wanted a blood test and spinal tap if that’s ok, he then asked when did I have the MRI I told him it was August, he said he wanted me to have another one in February, so I am just waiting for my appointment later this month.

So now I have the spinal tap appointment not next Thursday but the Thursday after then it’s back to limboland for me I hope they will bring the neurologist appointment nearer I will phone the department up to see if I can do it any earlier, some of the people have really good advice and quite a few have said to phone the hospital up.

  1. I don’t know if I have got MS although I have had a lot of symptoms like pain bowel problems pins and needles fatigue and foggy thinking, I put most of them down to the fact that I had some really bad health problems at the time I lost a lot of weight 7 and a half stone, I was over weight though it brought my weight down to below normal. I think I will stop here as I could ramble on but I don’t want to bore anyone. Kay

The first neuro I saw requested my brain scan to check for ‘anything sinister’ and mentioned MS. When that came back clear he said he was reassured. However I saw another private neuro as the NHS neuro was way behind on his follow up appointments and I didn’t want to have to wait even longer. The second was the ms specialist who didn’t even mention MS to me but when I asked about it he said he didn’t think it was as my brain MRI was clear so it would be very unlikely. I was slightly reassured at the time but since then my numbess has just gotten worse so I won’t be convinced until it’s 100% ruled out in my spinal MRI. The wait for results is a killer though :frowning:

Hello

I believe that a good neurologist can carry out a neurological examination and tell whether the reflexes and other signs indicate whether MS is more or less likely. So trusting in an MS specialist would be my best advice.

I do understand that having had a clear brain MRI but not yet having had a spinal MRI scan leads you to think it still could be MS, with the demyelinating damage having all been restricted to your lower body. But I can only suggest that you keep your mind open to it not being MS.

Obviously this would mean you are still looking for a cause for your symptoms. And this would just leave you still a mess of worry and concern.

I hope your spinal scan is soon. That you get the results very quickly after. And that you find some resolution to your worry and fear.

Sue

Thanks Sue… I think that’s probably part of the problem, I read a lot and am probably too well informed. I know of a few cases where people have had lesions in their spine but not yet in their brain. I’ve also heard this can mean that it’s more likely to be PPMS(?!). I’m trying not to think about it and dwell on my symptoms too much, but since September they just seem to keep getting worse. It’s about two weeks until I should hear back, and I’m hoping that there’s an answer and it’s something ‘fixable’.

Well… my cervical scan came back normal, so the consultant said there’s nothing to support an ms diagnosis. I feel slightly relieved but also absolutely fed up and feel like I’m back to square one! I have felt a bit of subsidence with the numbness in my stomach and left hip, but I don’t want to get too hopeful as this has happened before and it just came back worse. So… if it’s not central nervous system, that points to peripheral neuropathy, but whats causing my symptoms know one seems to know. I really hope it doesn’t turn out to be ideopathic, as if there’s no root cause to treat, there’s not much they can do about it. Next stop a nerve conductivity test I think, to check for nerve damage. If that comes back clear I’m obviously mental lol!

Hello (again)

Have you heard of Functional Neurological Disorder? Have a look at What Is FND - FND Hope International It could be something like this that has been causing your symptoms.

But of course, your nerve conduction test may give you answers.

Best of luck.

Sue