In Limbo

Hi all, new here and looking to vent a bit.

I am 49 now but have had symptoms for about 6 years. They included pins and needles in my arms and hands, severe headaches, vision problems, balance issues. I finally fought with my GP, who had been treating me for diagnosis’ such as carpal tunnel syndrome, migraines etc, to be refered to a neurologist (2017) . I had spinal and brain MRI’s and was told I had a Chiari Malformation whereby my cerebellum has descended through my foramen magnum by 15mm. I was referred to a neurosurgeon who decided he wouldn’t operate to relieve the compression. So since then I have been treated with various drugs for nerve pain.

I also developed muscle problems, mainly in my legs, where my toes/feet would bend up and I could not straighten or bend my foot out for a minute or so, and sometimes my leg would cramp in my inner thigh and draw my leg in. I reported these symptoms to my neurologist who said we should watch these and see what happens. These are not typical symptoms on Chiari. I asked to see my reports from my MRI’s and was quite shocked to see that it had been noted that I had multiple white matter lesions on my brain and further lesions on my spine at the C2 and C7 level which, according to the report, ‘were highly indicative of demyelination’, which, after some research is indicative of MS. I have another member of my family who suffers from MS already.

Now I am waiting for another appointment with my neurologist to discuss this. Right now I don’t really know what is going on with me, hence the ‘limbo’ part…

Limbo isnt a great place to be…visited it on and off meself for years!

I agree, demylination could be indicative of many things…not just MS. Been investigated for those things recently.

Hope your next appointment is useful.


Hi, new here also.

I was in Limbo for almost a year so I guess everyone has different diagnosis timelines. I’m newly diagnosed with highly active relapse remitting MS. Being in Limbo can be a good and bad thing in my own personal experience as it prepared me for when I was finally confirmed. I did all the google searches possible and was told a few different things from the tons of doctors I had seen. My advice is to stay positive always but also prepare yourself so it isn’t a massive shock to the system. Good Luck and I hope you leave limbo soon. :slight_smile:

Hi all, I have just been diagnosed with Primary Progressive MS and am in Limbo as well waiting for my NHS initial appointment too. Feel very confused and anxious so thought I would touch base. I have started a blog for anyone that may be interested. This is my honest diary so apologies for a little bit of bad language! Being fitness obsessed this is a real blow for me. :frowning:

Hi, I had trigeminal neuralgia for 5 years then had brain surgery to make it ease. Year after I got optic neuritis. My right keg seems to turn off, like a jelly leg and I struggle to walk. I get pains like the trigeminal pains but in my hands and fingers that come all of a sudden then go again. I went recently and my MRI us still clear which is good obviously, but he said they can’t say if I have ms or not. He thinks I had a uhthoff’s phenomenon recently as my leg wouldn’t do what I was telling it to fir 10 days. I don’t want to have ms, but I used to be fit and do judo and fight internationally so I had muscles that worked and good balance now I can’t walk in a straight line. Im worried that if I’ve not got ms what is it, are they missing something.

Glad you wasn’t in Limbo long and your got your diagnosis. When you get past the first 10 years of limbo it becomes hard to stay positive. Just knowing whats going on is a relief. I hope you get all the support around your care that may be needed. All the best Lina

Hang on in there, I hope you find out what is going on sooner rather than later. I also have a parent with MS and 2 siblings with MS. I understand that after years of ups and downs how frustrating it can be without a solid answer. Take care Lina

I have trigeminal neuralgia (drives me nuts),I take carbamazepine for it. Take care Lina

Thank you for your kind message. 10 years of limbo I couldn’t possibly imagine. I would definitely agree staying positive for a short period of time is far easier. I hope you were able to leave limbo and finally gain some answers.

Best Wishes


Hi there!! Do you experience sensory symptoms? What were your first symptoms. I’m in limbo now and trying to make sense of things.