LUPUS UK
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MS investigations commencing in the new year

Hey,

I’ve had some weird new symptoms over the last week that I can’t explain.

I’ve not forgotten how to spell my own name, I can’t write with my right hand, so this post is testing to be so much harder than I thought. I’ve become much slower & getting my words mixed up & unable to pronounce words correctly. I went to see the doctor & I’ve been told that my symptoms could possibly relate to MS, my back pain has become considerably worse, & I’m having to get my partner to put 5 heat pads on my back a day to help relieve this deep bone pain. Thoracic Spinal pain is unbearable!

I just feel different in myself, I know something is wrong, my balance has been quite bad, I’ve been falling over & struggling with vertigo this Clumsiness & lack of coordination is really horrible.

My vision has always been somewhat blurry, but a lot has changed since, thinking problems & moments of staring into space has become a burden, I just keep forgetting things.. hopefully in the new year I can piece it all together because for me I’m always on the ball mentally, & now I feel my brain has a mind of its own...

X

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Hight dose prednisone could cause memory problem. Are you taking high dose prednisone?

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Hi WenWen,

Sorry for the late reply, No I’m

Not on steroids. The only medication I take is Lansoprazol 60 mg. and solphodol for pain. X

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What a worry for you Laura. I have had similar symptoms but not as severe or dramatic. I’ve been tested for MS but mine proved not to be. CNS Lupus and Sjögren’s and some types of Vasculitis can present similarly and can be misdiagnosed as MS. In the end mine was a very MS-like version of Sjögren’s. Try not to worry too much over the coming few weeks. Stress won’t help at all and when you are in so much pain with your back - the resulting fatigue and the pain killers can cause weakness and numbness - glad you are going to be investigated though. Hope you and yours can manage a reasonably happy Christmas and New Year despite all this uncertainty. Twitchy xx

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Hey twitchytoes,

To be honest Hun I didn’t worry to start with. I’ve been feeling so ill with this respiratory stuff that I didn’t really batter an eye lid. I did look up the symptoms, quite similar, but what sort of tests apart from the obvious do they actually do?

The only thing that is worrying me now is the shakes & twitches.. 😉

When I’m stood up straight my head has a slight twitch, I can’t describe it, ummm it’s like it’s moving..

it won’t stay still.

To know you’ve had some tests for this is a comfort, because you know what your talking about and through your experience you can support and guide others which is great for me. Doctors don’t really explain the process they just say one liners and I’m left in the unknown.

I will admit I had a stressful Christmas. I was relied upon a lot, & ended up exhausting myself stupid & become unable To move. My partner had to help me get dressed .. Due to wrapping so many presents my hands afterwards were stuck in a contorted position. My little finger & ring finger were bent & curled in.. I had to manipulate my other fingers but took a while to move them freely again. I’ve never had that before. My dad said it looked like arthritis but it’s all new to me, so stiff & hard like petrified wood.

I do need to reduce the stress. I also need to learn how to relax. Sounds silly but my heart plays me up when I’m at rest & I scared to relax because my resting heart rate is 160bpm + & I become exhausted & extremely tired so it’s a catch 22. Stay stressed & ill, or relax & become ill. Lol !

Anyway hopefully the new year will bring some relief. Thanks for your message,

If I don’t get to talk to you before, happy new year xx

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Hi Laura,

Can I ask what medications you’re on for your lupus? Do you have extreme fatigue as well?

I have had a recent flare of similar symptoms, no back pain but lack of coordination, pins and needles, severe concentration, memory problems and behavioural changes. Lupus affects the brain and nervous system in so many different ways but the great thing is that it almost always gets better again. I have been told by the neurologists that hemiplegic migraines also cause a lot of these symptoms and the rheumys day that headache/ migraine can be part of these attacks in lupus.

I am diagnosed with neuro- psychiatric lupus (NPSLE) - it’s the new name for CNS lupus, as they realised that was inaccurate as it can affect the peripheral nervous system and autonomic systems too. I had some very weird symptoms including hallucinations when it was at its peak but after a week of high dose steroids most of the symptoms improved and a few months later I am almost fine again (still some fatigue and less major cognitive issues but think that’s just a part of lupus for most of us!).

Can you speak to your rheumatologist? Do you have a good one?

Really hope you feel better soon

X

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Hey Melba1,

I’m not on any & haven’t had any treatment. I was misdiagnosed with Vasculitis this year & then my lab test results indicated Positive ANA speckled pattern, Positive Anti DsDNA, Positive Anticardiolipin Positive ENA & Positive ANCA, I saw a vasculitis specialist in Birmingham who diagnosed SLE & said I needed to start on hydroxy. But that never happened. So my investigations continue.

I’m totally wiped out. Some of my previous posts might be worth a read on a rainy day. It’s exhaustive but it will fill in the blanks for you. Keep you updated so to say.

I do suffer terribly with extreme fatigue,

Jeez you’ve also been through the mill, I will do some research on CNS, I am my own investigator.

I did have a rheumy but I was referred to Birmingham hospital for vasculitis, so the lupus was put on hold.. I noticed on my sick note it still says vasculitis/lupus & crohns investigations so I have no clue.

So that’s the plan in the new year. I’ve been seeing a private Gastroenterologist as my GP has been a complete failure throughout my journey.

I have heart issues & been waiting to see a cardiologist since February. I get worse whilst I wait.

Thank you, I hope you’ve had a good Christmas & a wonderful new year. Let’s hope 2018 brings us some peace xx

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Hi Laura Mk30

I hope that you feel better soon, it could possibly be a reaction to the flu and strep throat, I know I always have a flair after a bad infection & that may be the case with you at the moment as your immune system will be weak.

I hope that you feel a little better over Christmas as I find that is the worst time to be ill.

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Hey Cal66,

I hope you had a nice Christmas,

Thank you, I wish I knew what was happening to me but I’m just going with the flow of things. I’ve now developed laryngitis & have sprained a muscle in my heart. So from flu-strep- chest infection I now have this.

Thank you ever so much for taking the time to write to me it’s most appreciated. Happy new year for later. I hope it brings you some peace & happiness x

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Laura I truly hope 2018 will bring you a diagnosis . So sorry you are experiencing such awful symptoms. Hope they improve for Christmas Day at least so you can enjoy it with your family.

Best wishes. Ludo x

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Hey Ludo, sorry for the late reply.

Awwwww thank you, that would be amazing, I’m very hopeful ! It’s ok, i guess I’m just rolling with it. I hope you had a lovely Christmas, I thought of you. & happy new year. 2018 will be my year, I’ve planned ahead & decided to book a double appointment with GPs & express what I would like to be done regarding tests etc. If they won’t help me get a diagnosis I will. I’ve done a lot of research since being bed ridden at times, & written down questions & back up information. I’m going to be my own investigator, lawyer & try & save my own life lol if they won’t . A diagnosis for me would be the ultimate, because then I’ll be able to understand my condition know how to control it & move on with a piece of mind & treatment. Remission is my goal..

Take care Ludo & I hope 2018 brings you less pain, more comfort peace & happiness that you most definitely deserve. Thank you for everything xx

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Hi Laura

So sorry your facing more tests in new year!.What a horrible time your having. !. I can echo the great reply you've had from Twitchy that these immune illnesses can mimic the symptoms of MS!. I too have had tests to rule it out as my nerves have been greatly affected by lupus but not as badly as you luckily!. They do the ms tests just in case so fingers tightly crossed you will get the all clear too!. Hopefully it will be another piece of your jigsaw on the way to better treatment and diagnosis. Best of luck for your colonoscopy too. Fingers tightly crossed for you. Keep us posted and I hope you have as lovely a day today as possible with your family. X

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Hi Misty,

It’s just the way the cookie crumbles, I always get fantastic replies from twitchy & yourself & others, I really do hate my immune system, without diagnosis & treatment it’s the devil. Me too, another jigsaw piece is much needed as the puzzle is a mess ! Thank you Hun I most appreciate your kind words of support, I’m weary about the colonoscopy prep, but it’s a test that I must have whether I like it or not. Good luck with all your new year tests let me know how it goes. I fondly think of you & your journey, same for twitchy.

Happy new year hun I hope it brings much relief, comfort & happiness xx

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Hi Laura

Thank you for your very kind words, appreciate it. Let me know how you get on and I'll be thinking of you. I hope 2018 is the BREAKTHRU year for your health and brings you much relief and happiness. X

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Lovely words misty, & I received much comfort. I will & ditto, the breakthru bit made me smile ! Fingers & toes crossed. Xx

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LauraMk30 please check everything you eat and in particular that you drink for ASPARTAME. This will cause all that you mention and may be the reason for you feeling so out of sorts - it was for me! Check back my posts to save repeating. Might save your life or avoid a lifetime on unnecessary meds.

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Hey DollyDimples,

I was told about Aspartame, which is in Diet Coke? Which is something I don’t consume.

The only thing I eat is mashed veg & potato. As struggling with digesting fats & solids

Thank you for the advice.

Hope you’ve had a nice Christmas & have a great new year xx

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Hi. I thought I had MS at one stage - it turned out to be a B12 deficiency. I'd get this checked and make sure that your Lupus is under control. Both these things can mess with your nervous system.

Get to your most senior specialist and a neurologist who is aware of how SLE can effect the nervous system.

xoxox

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Hi Freckle1000

Hey Hun,

Ahh ok, I have Serum Folate deficiency. I had a diagnosis this year of SLE but now it’s not definite. They think it could be something else. But I tested positive for ALOT of tests regarding my lupus screen, My previous posts will fill you in.

I’ve never seen a neurologist I think I need too. My nervous system has never been effected well not to my knowledge but all these new symptoms are quite distressing plus my bobbing head. It has its own shake. My parents noticed before I did so sometimes I feel it sometimes I don’t. But it’s made me quite self conscious. But anyway I hope & pray it’s not MS a family friend died of it, & she was suffered terribly.

I haven’t a senior specialist or a specialist of any sort. Still waiting to be referred back to new rheumy, seeing a private Gastroenterologist at the moment due my gps neglect.

A neurologist is my next goal. X

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Hi Laura,

Yeah. With these kind of things you need a good team of specialists to work out whats going on. A private neurologist does sound like a good idea for you. Its a pity getting a good set of specialists can be so expensive but it often takes a team of them to figure out the more complex stuff. preventative medicine is the best option for these immune type things.

And yes....I know the feeling of having to bypass GP's to get help. I've done it a million times. You do have to be your own GP at times. Hope you can find a better one.

All the best in finding a definitive answer as to whats going on.

X

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