Last reply 2 months ago
Stuck in Limbo

Hi, I’m Lisa, 37 and currently undergoing tests to see if I have MS.

My mother has MS and has had it all my life. She is now bed bound, unable to eat or drink due to aspiration and has very little memory/brain function left. It’s simply awful and I’m terrified.

Last year I tripped and lost balance a few times but thought very little of it. Earlier this year I started getting numbness in my feet and hands so I contacted my mum’s neurologist who ordered an MRI scan which I had in July. It showed abnormalities but not all in the usual places for MS. I’ve had a lumbar puncture and only half the results have come back so far but they were clear.

My neurologist gave me a physical exam and said my reflexes were a little rapid but nothing too extreme.

I now find myself stuck waiting for another MRI scan to see if they can determine if the inflammation is active. If I have it, I’m not sure I can cope. I know treatments have changed since my mum developed MS (she went 15 years of active MS without any diagnosis or treatment).

I was told to join this community to see if helps. Hopefully it will because I feel I do need help to stay positive.

Thanks for your time reading this. Any advice welcome.
Lisa

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birdboy
2 months ago

Hi @lisa_mills,

Welcome to site. You know better than most of us on here that a diagnosis of MS is quite frankly terrifying. However, as you say, we have come on leaps and bounds over recent years and now have a suite of medication at our disposal to fight this cursed disease. MS also means completely different things for everyone, so try not to use your experience of it when thinking about your prognosis.

I’m recently (4 months) diagnosed myself and have managed to stay positive, so far. Try not to worry about what the future will hold as what will happen is anyone’s guess. Please feel welcome and free to ask anything/rant or chat with us, you are not alone in all this.

😁 X


vixen
2 months ago

Hello @lisa_mills, I’m sorry you’re having all this anxiety, I can see MS has completely overshadowed your life. I can’t tell you not to worry, because I know you will. If it is MS, then you are not going to be like your mum who went undiagnosed for such a long time. And if it is, there are treatments, medications and support which you will be able to access. This is going to sound weird but, after being diagnosed last year, I would say that the total quality of my life is actually better now that if I had been diagnosed. The choices I make, my longer term aims, my diet, my outlook, my attitude to work, my use of free time, everything is completely different because of re-evaluating everything. This is a horrible time of uncertainty for you; most people in Shift would tell you that the uncertainty at this stage is worse than anything else. So, stay strong, make a big fuss of yourself until the MRI and follow up appointment. Please let us know how you get on, sending lots of love and support to you x


stumbler
2 months ago

Hi @lisa_mills and welcome.

It’s terrible when you see someone suffer from a condition that you may have now contracted.

I can’t add anything to the advice given above. It’s just encouraging that you seem to have the correct medical support available to you.

If the NHS start dragging their heels, going private may be an option, subject to personal finances, to expedite diagnosis. Then you can switch back to the NHS lists for ongoing treatment.


potter
2 months ago

Don’t let your mothers MS freak you out, if you have MS it will be most likely totally different. I had two aunts that had MS before there was any treatment. One of them was in assisted living by the time she was 32 and died when she was 50 from brain shrinkage. Her sister had foot drop and was still just using a cane when she died at 75 from cancer. I am 65 and still walking, not as far or as long as I would like. I was diagnosed at 55 and have been on a DMT for 10 years. Potter


peterfrancis
2 months ago

Hi Lisa and welcome to the site.

As others have said, don’t allow your Mothers experience with MS dictate yours, MS is very different for different people.

Be aware that an MRI Scan does not give a full and complete picture of what’s going on with you. I had an MRI that came back and said the lesions were inactive yet there was no change in my symptoms.


lightning87
2 months ago

This must be a worrying time for you especially since you have first hand experience of seeing someone with MS. But please, please try not to stress or worry (easier said than done I know). You may not have MS and if you do, the treatments out there are incredible now.

Keep your chin up x


jas64
2 months ago

Hi Lisa ,
My cousin had MS and was like your mom – died at 42 from complications – I was diagnosed at 24 , am now 54 and still walking (admittedly somewhat stiffly !) as others have said , there are much more treatments available – my neurologist says location ,location,location MS is like real estate and the location of the lesions are what determines your symptoms – everyone here is here to support you no matter what your journey


wendyhills
2 months ago

Hiya. I know exactly how you feel my dad has had MS all my life and is now in a wheelchair. His memory and cognitive functions are poor and is having trouble with his voice box and swallowing. I’ve seen him deteriorate over the years and when I was diagnosed in April this year all I could picture was how my dad was and felt that this was my fate. It really isn’t there are so many options for us out there today that weren’t available to our parents. MS isn’t the scarey diagnosis it used to be.

You are not alone there is always someone on here willing to help and give advice. When you finally find out for sure you will be prepared. I wish you all the best and am here to talk if you need me x


laurasavage567
2 months ago

Hiya!!

I feel like I can relate to you on this, my mum also had MS (for 7 years undiagnosed) and then was progressive for as long as I can remember, about 20+ years. 6 months after she passed away I was then diagnosed with MS after having optic neuritis, and numb feet and legs etc. As you can imagine it was a huge shock. I know everyone will tell you the same thing but research and treatments have come so far since our mums would of been diagnosed! It may not be a comforting thought now, I can’t imagine as well how frustrating it must be not being able to get a proper diagnosis. I bet your mum is a strong lady, and I’m sure you are too! Positive thoughts do help although sometimes it is hard! I hope that you can get an answer too, whether that be MS or something else. Fingers crossed for you and if you ever feel like talking to someone who is in the same boat feel free to give me a message whenever 🙂 stay strong and take care xx


lisa_mills
2 months ago

Thank you to everyone who has written such positive and supportive messages to me. Each one has had me in tears but it does actually help to hear from you all.

I have managed to get a cancellation spot for the next MRI so am having that tonight which is at least something and one step closer to knowing more…

Fingers crossed.
Lisa x


lightning87
2 months ago

Glad you managed to get a quicker MRI, the waiting for the tests is the worst part. Once you know then at least you know what you are dealing with. Limbo land is awful, I felt relief finally getting a diagnosis. Try to stay positive, what ever the outcome we are here x


bonang1975
2 months ago

Gidday Lisa hope your doin ok i know its a real pain in the u know what in limbo😡frustrating as hell. Just remember we r all here i know its hard but try to be positive.

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