Last reply 1 year ago
Struggling in Limboland :-(

Hi everyone
I know many people go through this, but I am really struggling with being in limbo, with my current symptoms and with fears for the future.
I had an MRI in November and saw the neurologist in December – a new area of inflammation was found (he called this transverse myelitis). This is my third episode and by far the worst. At this time I had numbness, tingling and pain on the left side of my body and my left leg as well as fatigue and balance issues.

I had numerous blood tests (no issues found) and was referred for a lumbar puncture, which I’m still waiting for.
There was an improvement in my symptoms for a while but in the last few weeks I have had numbness, tingling and hot and cold sensations in both legs and also some bladder issues. As advised, I let the neurologist know and have received a letter today to let me know he is requesting a further MRI.

Suddenly I feel as if I just can’t cope with this any longer!

In the last letter he sent to my GP, he indicates that I may have an unusual presentation of MS or possible neuromyelitis optica. I think the NMO is now ruled out by blood tests. He didn’t explain what he means by “unusual presentation” – I am 52 so a little older than the average age for diagnosis – not sure if that’s it? My brain MRI showed some “tiny white spots” which he did not feel were significant (no white spots on MRI 2 years ago).

I also have Hashimoto’s and before this current episode, was considering LDN (my antithyroglobulin antibodies are high). I’d still like to give this a try but am not sure whether I should wait until after my lumbar puncture? Does anyone know whether LDN will interfere with the outcome of a lumbar puncture?

I’m sorry about the very long post. I don’t really have any particular questions but just needed a safe place to talk about how rubbish this is! I am usually an upbeat positive person but feel I have lost a bit of myself over the last few months. I am desperate to get on with living again but feel like life is on hold.

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1 year ago

@sharrona , limboland is an infuriating place. It’s a stalemate position in your life, with no going forwards or backwards.

There is specific criteria to diagnose MS, which the Neuro should be using, The Lumbar Puncture may be the last piece in the jigsaw, to give you a diagnosis.

I can’t comment on your LDN intentions. Perhaps an LDN Group could provide some direction here?

But, for now, you do need to be kinder to yourself. Allowing yourself to get stressed out will potentially make these problems worse for you.

So, chill out, but chase them up if the Lumber Puncture and MRI appointments don’t arrive soon.

1 year ago

Thank you @stumbler.
You’re right about the stalemate situation! I’ve mainly been coping ok but taken a dip today. I have no choice but to keep waiting and I know it’s better just to accept that. It would be so much easier if I knew how long the wait is.
I have chased the lumber puncture a few times and they tell me they have a 6 week target (which they’ve long since missed) and I’m near the top of the waiting list.
Anyway, I’ll take your advice and try to chill 🙂

1 year ago

@sharrona , keep nagging them about these appointments. Make yourself a nuisance, but always remain polite.

They’ll get fed up with you and get you in just to shut you up! 😉

1 year ago

Hi Sharrona, We’re a similar age and I had similar symptoms when MS ‘presented’ (not for the first time but this was the episode that got me into the ‘system’). It took a almost year for me to have MS confirmed- I was referred from a general neurologist who told me they thought I had MS but wanted me to see an MS specialist to a MS consultant who who said it wasn’t anything else but he didn’t want to give me that label (lots of waiting in between and tests) to finally getting a diagnosis after the next MRI showed new active lesions. During this time a thyroid issue was also picked up. Point is, I have a pretty good idea about how you are feeling as will many on this site! It is really frustrating and all I can suggest is try to stay calm, do yoga or similar (it really helps!) and keep posting as there is a great community on here. It will get better. Now I know what is going on, I feel more myself again, and being on a DMT has really calmed those burning legs! x

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