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In limbo land (update)

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

Hi all,

Just a quick update as promised. I have my brain mri results today and they were abnormal. They said I had multiple brain lesions and evidence of a demyelinating disease. I have been booked in for a lumbar puncture.

Does anyone know if this could be MS?

I will keep updating so I can help other people who are going through the same journey

Hi all,

Feeling a bit down after the talk with the neurologist the other day , I have taken the rest of the week off work so I can get my head around what he said.

It’s been a long road to this point and I think if my doctor had listened to me years ago instead of telling me it all in my head or its medically unexplainable, then I could of maybe prevented the awful symptoms due to the damage that has been caused.

This is what’s upsetting me the most.being made to feel that I was making everything up.

The nuro said that the damage to the mylan sheeth is what’s causing all my symptoms.

Just feeling a bit sorry fo myself today and am very worried about the lumber puncher.

In tears because I think my life will change forever.

Sorry for venting but just needed to get it out my system.

Thanks eastendgirl for your kind words.

A bit up and down at the moment. The neurologist did mention ms due to the location of the lesions but is not going to make a formal diagnosis until after the lumber puncture.

Going to watch some films and try and relax

Even though I was expecting it , it was still a shock to the system.

Hoping I can get a stick which will help me with my balance. I have been putting it off as I haven’t got a formal diagnosis yet.

My wife is a nurse and is looking after me and explaining the lumber puncture.

Just sad that I have gone from a fit army veteran to someone who can’t even go for a walk without having to sleep due to the constant fatigue.

Going to concentrate on fun things this weekend :relieved:

Hello Wobbly

I’m not surprised you’re feeling a bit miffed at the long journey to diagnosis. It is sadly still far too common that people are not having their symptoms taken seriously by their doctors. As a result it’s typical to feel like you’re exaggerating, or not believed, or that the doctor thinks it’s all in your head.

Bizarrely, for me it was the other way round. In 1997, my GP (who I hardly knew, having just moved), heard me say ‘my ring fingers gone numb’ and referred me straight away to a neurologist.

The neurologist took it seriously too (by which time the numbness had spread to my legs). He arranged for tests as an in-patient including MRI, LP and VEP. All these were positive but a doctor came and told me ‘you haven’t got MS’ (the fibbing liar!). It was common then, there were no DMDs. They gave me a 3 day course of IV steroids, booked me a repeat appointment with the neurologist and left me feeling like a medical mystery.

Meanwhile a letter was sent to my GP saying all the tests had been positive (apart from a load of blood tests, including a test for antibodies to Epstein-Barr) and that it indicated a demyelinating disease but that ‘we won’t mention MS unless she does’. I knew nothing then, including what I was being tested for (there was no Dr Google, in fact the internet may have existed, but it was a closed book to me).

I found out it was MS 5 years later, following quite a lot of relapses, that I still thought were just random semi imaginary things. But then DMDs had at last become available on the NHS.

For you and many others these days, you’ve been down a long route, sent to all the different specialists and only relatively recently even suspected MS was possible.

To me, a neurologist telling you you have

Seems to me to indicate quite strongly that MS is the likely diagnosis.

When the neurologist said the symptoms you’ve experienced are the result of damage to the myelin sheath again that indicates MS.

MS relapses occur because there’s inflammation in your central nervous system (ie brain an spine). The ‘fighter cells’ of the immune system see the myelin which normally protects the nerves, as an ‘enemy attacker’ and cause damage to that myelin.

It’s a bit like electrical wiring in your house attacked by mice who think the insulation covering is cheese and start snacking on it. The wires (nerves) underneath the insulation (myelin) are damaged and there are weird signals running through the wires (nerves).

This amateur means of explaining what seems to be happening to you is my understanding that the lumbar puncture will probably prove positive and you will be diagnosed with MS.

What’s important for the lumbar puncture is that you a) stay laying down for as long as possible after the test, and b) drink something with plenty of caffeine and sugar in it (eg full strength fat Coke). Both laying down and caffeine (take a bendy straw with you) should help you avoid a killer headache.

Have a look at McDonald criteria | MS Trust This will tell you what criteria are used to diagnose MS. Also Lumbar puncture | MS Trust This will help you prepare for the LP.

With regard to your balance problems, I don’t think you need wait for diagnosis if you need help when walking. I remember almost feeling like I needed someone to give me ‘permission’ to use a stick or a crutch (which I found much more helpful than a stick). You don’t need to wait until someone, eg a nurse, doctor or physiotherapist tells you to use one. If you find a walking stick shop you could be measured for the right height. Don’t wait for diagnosis if you need it now.

Best of luck.

Sue

Sorry for the late reply sue

Thanks for the great advice , I have started using a cane , it was a bit embarrassing to start with but I am getting used to it and it does help.

Went to the doctors with bad lower back and leg pain this week and the doctor was fantastic, he spent over a hour with me and explained that ms is the most likely diagnosis

He wanted to send me to hospital that day to get the lumber puncture and hopefully start treatment but I decided not to so he has given me some gabapentin (I think that’s what it’s called) for the nerve pain.

I got a copy of the neurologist report which says I have a large flame shaped anterior pericallosal legion , a medium right mid pericallosal legion plus small left pericallosal anti white matter lesions. There is also further possible high signal on the left superior cerebellar peduncle.

Just waiting for my lumber puncture letter to arrive but have had to stay off work as I lost my eyesight quite rapidly whilst at work yesterday.

Hope you are well

Hello again Wobbly

What a stinker of a time you’re having. Going through the myriad stages of an MS diagnosis is horrible. I hope you have friends and/or family to help and support you through it.

Once you are formally diagnosed (I’m sorry, but I am pretty much convinced you will be), assuming you are given the diagnosis of relapsing remitting MS, you should at least think about taking disease modifying drugs.

These, DMDs, are designed to reduce the number and severity of relapses. Over time, MS relapses can lead to permanent disability. If you can prevent as many relapses as possible, you’ll reduce disability.

As for me, I am very disabled. I was unable to take DMDs for most of my 25 years with MS. Initially because there weren’t any, subsequently because my stupid body wouldn’t or couldn’t cope with them. So I’m a full time wheelchair user, can’t walk at all and have both bowel and bladder problems as well as a certain amount of cognitive damage.

It’s a good thing that you’ve started using a walking aid. I know it feels like everyone’s looking at you, but honestly, it will keep you more stable and ultimately safer.

I hope the Gabapentin is helping you. If you find it doesn’t do quite what you hoped for or expected, see your doctor and ask to switch to a different drug. There are a number of neuropathic pain drugs.

Sue