Forum

In limbo land

Hi I’m new here

I am undiagnosed at the moment but have been having symptoms for over five years now.

After 5 years of being sent to numerous specialists (rheumatology, cardiology ect) I finally was sent to see a neurologist in May,

I had not considered ms and was confused why the neurologist was looking in my eyes. That is what has lead me here.

After the examination he said I need to send you for a brain mri and then I will be in touch with my findings. I had the mri in July and am stuck waiting for the results which is making my symptoms much worse.

My first symptom was fatigue and my left foot dragging, I also get a feeling like bugs are crawling on my skin, I went to cardiology as I got pain in my chest like I was being squeezed and I thought I was having a heart attack but everything was fine.my legs are now very wobbly when walking down hill and the vertigo keeps coming and going which effects my balance.

There are more embarrassing symptoms as well!

I hope its not ms but I am going out of my mind waiting for the results

Hey,

Just want to say you’re not alone. I’ve been struggling with symptoms too. Only since may for me tho.

I have had a brain MRI today. So I understand your fear during the wait. I struggle to do much due to dizziness and have been numb down my RHS for about 7 weeks now among other things.

Just wanted to offer some solidarity.

Winnie

Hi,

Thankyou for replying , its been a rough 5 years but hopefully I will get answers soon .

I first thought I had parkinson’s and never even thought of ms .

The fatigue has been really bad this week , at first I thought I had lupus because whenever I was out in the sun it would make me very tired and I would sleep for days after. but that was ruled out by the rheumatologist.

Hope your feeling ok and we can travel this road together

Best wishes x

Hiya.

Apologies. I hadn’t seen your reply. Hope you are doing ok. Yes, supporting each other through this limboland sounds good to me. :slightly_smiling_face:I’m also going out of my mind. Not helped that my amazing husband now has to travel for work for the next two days so I’m on my own with the two kids while I wait for my MRI results to come through.

How are you doing today?

Best wishes

Winnie x

Apologies for the late reply, I have been at work.

It’s been 5 weeks waiting now but I’m hoping no news is good news,

Got bad fatigue, and foot drop today but these for me are a constant problem, had to catch the bus today (they are my nemesis lol) , trying to get on without falling means I lift my leg to high and look like I’m doing a funny walk.

Then came the dreaded stairs at work , my legs always tremble when using the stairs so I try to do it when no one’s around.

How’s you , have you had your neurological exam yet?

I kind of have just resigned myself to living with it all as its been happening for so long but would be nice to have a answer either way.

Hi,

I got my results today from brain MRI. Nothing abnormal. Which is of course good news but leaves me no further forward. I am seeing a neuro on Tuesday tho and hopefully he can advise next steps.

I feel fir you having had problems for 5 years.

I recognise your problem with stairs. I’ve recently started having shaky legs on stairs. Only in the last week or so tho. Not sure what to make of it. I’ll go through it all with the Dr when I see him. I’m hoping he refers me for a spine scan and LP.

Hope you get your results soon. That’s a long wait for you so far.

Winnie

Hi, I’ve just been reading your post and could have written it myself. I’m waiting for my MRI.
Had symptoms for a few years but it was always put down to pregnancy related and then recovery from child birth, now 2 years post party they’re saying it’s not my pelvis that’s the problem it’s suspected MS that’s making me fall/numb/tingly.

The thing that struck me most about your post was the walking downhill bit! I literally feel like I’m being ridiculous but it doesn’t feel like my legs belong to me. Uphill is better although the fatigue makes that hard too.

This limboland malarkey is so stressful. I also have 2 young children to look after and I just want a diagnosis so I can get on and deal with it. The not knowing is awful. But by the sounds of it I’ve got a long way to go.

I hope that you are ok and have had some progress in your own situation. I just had to reach out to someone going through the same. I’ve no idea how to deal with it or who to talk to.

Best wishes

JJB

Hi job,

Sorry for the late reply,

I’m sorry you’re in limbo land , its a unforgiving place to be.

My symptoms have become worse but I think that’s due to the heat.

I got a letter finally after 8 weeks saying the neurologist wants to speak to me about results.

I’m scared but hopefully that something can be done.

Be kind to yourself

Sorry its jjb not job , predictive text lol . Hope you’re OK, its a tough road to travel but I hope you get the answers you deserve. I will keep this post updated on my results

Best wishes