Ms or not : Hi guys don’t even know if you... - My MSAA Community

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Ms or not

Buckley123 profile image
29 Replies

Hi guys don’t even know if you remember me my mum had MS she passed away at 47 two years ago since then I was diagnosed with MS I took my ms Diagnosis to an MS specialist Dr Omar Malik in Charing cross hospital he told me that I didn’t have MS and my lesions were in the wrong area of the brain. He told me I was likely to have lupus or sarcoidosis my lupus bloods came back negative but I do feel I fit with Lupus better than MS I guess. I have optic apathy of the left eye so not quite optic neuritis.

My lumbar puncture was negative for MS my bloods for lupus are negative also and my neurologist is London’s leading specialist for sarcoidosis he said it’s not that.

My age levels are raised but nothing else is in my bloods.

I have muscle weakness in my hip griddle shoulder griddle and neck flexors.

I’m on Hydroxychloroquine and Amitriptyline.

Mum mum seemed to follow the ms path in my childhood

Urine infections optic neuritis muscle spasms but she was diagnosed in the 90s and never questioned her diagnosis

I don’t know her results but she had issues with drugs And pharmaceutical drugs and drink my whole childhood

She became pregnant 10 years ago and went into a nursing home by the time my brother was 1.

She rapidly declined

Do you think this is ms ? My Nan I think has aps although antibody negative but she’s had strokes and on warfarin. She now has Alzheimer’s

Maybe we all have something that isn’t autoimmune ? Maybe it’s neurological? Am I mad to think this my neuro said so

My partner thinks I’ve lost it and the amount of time my mum spent in hospital it would have been picked up ?

My Nan ? She’s 78 ? My concern is my daughter 12 showing symptoms same as me I’m worried for her she’s been diagnosed with pots and hyper mobility what if we have been barking up the wrong tree

There I said it I’m sorry to ask here I don’t have anyone else to ask

Love to you all

Jade xx

29 Replies
rjoneslaw profile image
rjoneslaw

I think ur right to ask here. Did u get second option bouts going on ?

Buckley123 profile image
Buckley123 in reply to rjoneslaw

For me yes I’ve had three neuros all agree it’s autoimmune just don’t know which one 🙇‍♀️ they told me always apart from first neuro that it isn’t ms until my latest neuro who said never say never ?! I didn’t know anything about autoimmune before my mum died mum had ms and that was that because I was a kid nothing ever made me think otherwise xxx

rjoneslaw profile image
rjoneslaw in reply to Buckley123

I also have another autoimmune disease and its called stills disease it the adult form of jra (juvenile rheumatoid arthritis) . its called stills because i was diagnosed as an adult age 25. At 1st they thought is was lupus.

Buckley123 profile image
Buckley123 in reply to rjoneslaw

Thank you for your kindness I feel mad sometimes when I say I’ve had three neuros and that should be enough right normally yes but I’ve seen so many times them getting it wrong I have no faith anymore !

Maybe I’m wrong maybe it’s all just bad luck who knows I guess they must know what they are talking about ?

I’ve read about stills I think I’ve read about every single possible disease maybe I’m just anxious. How are you anyway xx

rjoneslaw profile image
rjoneslaw in reply to Buckley123

I'm doing well everything is under control. The meds help a lot

I had stills b4 MS with the stills it took 14 days in the hospital b4 they knew what was going on and years to get it under control. I take hydroxychloroquine for that and I get the Ocrevus infusion for the MS

Buckley123 profile image
Buckley123 in reply to rjoneslaw

I wish I had known what I know now when my mum was here maybe she had something else going on xx

Buckley123 profile image
Buckley123 in reply to Buckley123

She always reasoned to steroids really well xx

Newbie77 profile image
Newbie77 in reply to rjoneslaw

Have you seen positive results with the Ocrevus infusion?

rjoneslaw profile image
rjoneslaw in reply to Newbie77

Yes I have.

I just had my infusion on Jan 22, 2021.

Each time I get the infusion I noticed some improvement.

During this visit my walking speed improved by 6 seconds which is a lot

I have more strength on my weaker side

And my dr has told me to continue the exercise program that I’m doing with the MS Gym (themsgym.com)

They have both the free and paid membership i do the paid because it’s more structured and I get help adjusting my workouts when I need it and there is a community I can ask questions

They have free workout on their Facebook page and YouTube , there is also workouts sheets you can download from the site. You can find everything from their site

stiff19 profile image
stiff19 in reply to Buckley123

You’re not alone Buckley, the rheumy experience I had with no diagnosis but fibro which is not fitting has left me 2 years later much worse and no answers. Neuro still has no answers, I now have face ruined with drop and swellings , skin issues , muscle joint nerve problems including one side muscle wasting and more,but each time bloods ok and I can assure you I’m not crazy, symptoms acknowledged, can’t be denied now but no diagnosis though still not seen clinically after urgent referral a year ago just tests which don’t show clinical presentation and still under neuro investigating but he’s stumped 🤷‍♀️ It’s an awful lonely place, it’s not how you read, they test this and that it’s down to finding a doc to help you get the answers. Lost my mum at 47 too and I wish she were here as was ill before cancer and may have helped me with this and direction. Best wishes x

Buckley123 profile image
Buckley123 in reply to stiff19

Stiff19 don’t I speak with you on lupus group ❤️

How comes your here ? Someone reckon ms with you ? Or the same as me just searching ❤️

I remember we are both similar ❤️

Xxx

stiff19 profile image
stiff19 in reply to Buckley123

Just searching really, so much has been suspected by docs but nothing diagnosed. Yes I’m the same stiff 🤣🤣Just tired of no answers so still browse through incase something could give me direction but it’s a minefield.🤗xx

Buckley123 profile image
Buckley123 in reply to stiff19

I’m the same hun have you had a brain scan xx

stiff19 profile image
stiff19 in reply to Buckley123

Yes but before all these symptoms 🤷‍♀️

Buckley123 profile image
Buckley123 in reply to stiff19

😣😣 I had the brain scan next to no symptoms found lesions

Now my symptoms are crazy and my brain is stable x

Have you looked into b12 or myositis xx

stiff19 profile image
stiff19 in reply to Buckley123

Yes b12 ok , being tested for myasthenia but doubtful it’s that, neuro told doc he thinks I should see a rheumy too ( again) but I don’t want to see the ones I see before , they said they’d do muscle biopsy but didn’t and signed me off🙈xx

Buckley123 profile image
Buckley123 in reply to stiff19

I know how you feel but you do need a muscle biopsy xx

stiff19 profile image
stiff19 in reply to Buckley123

Yes I think so too 👍🤷‍♀️Xx

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Buckley123 I can feel how frustrated you are... And I'm so sorry.. unfortunately since MS mimics so many other diseases, that it can take forever to get the right diagnosis. I know it doesn't help.. all I can say is keep track of your symptoms, and your daughters! That way you can show your drs exactly what is going on! 🤗💕🌠

PS if you want an app to help keep track of your symptoms check this out... mymsaa.org/msaa-community/m...

Buckley123 profile image
Buckley123 in reply to Jesmcd2

Thanks for your help I don’t mean to moan it’s just frustrating like you say.

I’m glad if it’s not ms obviously but it’s not so great if you have all the symptoms and no better two years later ! I think I’m losing it at times 😫🤨🤪 xx

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Buckley123

Hey, a lot of people here understand that, believe me! I was dxd quickly, then tested again and again and again and pretty sure my neuro would check me again if l let him, the sadist! 🤣 He's a great Dr. It's my MS that's different. So hang in there! 🤗💕🌠

mm1527mm profile image
mm1527mm

Sorry to hear prayers that you find answers

Buckley123 profile image
Buckley123 in reply to mm1527mm

Thanks 😊

twooldcrows profile image
twooldcrows

wow it is hard to understand so many different doctors and none agree ...sorry ...don't know what to say ....i guess try another MS Specialist for it sounds like the one at the hospital is more for the other than for ms...good luck and hope for a good answer but like they say with ms no one answer for it for it does affect all a little different but never heard about a certain area of the brain in the mri....

Buckley123 profile image
Buckley123 in reply to twooldcrows

Thanks 😊 they all agree it’s not ms but can’t tell me what I’m fact it’s is 😅

I’m struggling with the idea of having multiple lesions on the brain optic atrophy Muscle weakness spasms high ace levels and it not being ms

Xx

mrsmike9 profile image
mrsmike9

Besides MS I have 2 other autoimmune diseases. It's not uncommon to have more than 1. I hope you can find someone who specializes in MS.

Buckley123 profile image
Buckley123 in reply to mrsmike9

Thanks 🙏 it’s a tricky one I wish I knew more about it when my mum was hear she may have had ms but maybe something else going on! Anyway can’t change that!

I’ve seen two ms specialists both agree not ms and it’s lupus bloods negative

It’s sarcoidosis I found a neurologist who is London’s expert on neuro sarcoidosis and it’s not that ! How can they be so sure what it isn’t? But can’t tell me what it is? I’m moaning I know.

So I have multiple lesions on the brain optic atrophy of my left eye muscles weakness spasms etc high ace levels in the blood but it’s not ms even though my mum had it. It’s a funny pill to swallow xx

mrsmike9 profile image
mrsmike9 in reply to Buckley123

It's the not knowing that will drive you crazy. I sure hope you can find answers soon! Are these "experts" suggesting anything?

Buckley123 profile image
Buckley123 in reply to mrsmike9

No nothing just it’s autoimmune but not sure which one yet 🤦🏼‍♀️😫 I can deal with anything just want to feel better and be on the right track xx

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