Brain 🧠 involvement anyone

[Buckley123]

Hi my name is jade is 29 and I have three children.

Last year my mother died from end staged ms at 47

Two months later my vision was painful dry so I went to a opticians.

Who stated I had rapd

After watching my mother I decided to put the ms worry to bed and I paid for a mri of the neck and brain 🧠

I was told I had lesions on the brain high intensity

And diagnosed with ms.

Sort a ms specialist who told me her thought I had lupus sarcoidosis or sjogrens

But not ms the lesions are in the wrong area of the brain.

I have seen a few Doctors remy at st guys fist privet now via the nhs

All my bloods have been negative 👎

Lumper puncher was negative

Brain hasn’t changed in 9months

Slightly raised ace levels but not sarcoidosis ad my neurologist is the leading sarcoidosis specialist.

I’ve had fibromyalgia mentioned to me a good few times now and wanted to see what you all thought 💭

I have

Joint pain worse at night

Worn joints

Muscle twitching jolting

Muscle stiffness mainly neck it’s terrible

Blurry vision I have prisms glasses

Headaches

Eye pain

Dry eyes mouth

Rashes

Obviously brain lesions

Tiredness it can be terrible

Pa with b12 deficiency

Bone marrow changes in my hips

Hip displayia

I get flushed cheeks

Constant feeling of something in my throat

Muscle weakness

I run hot a lot

Brain fog

Slight hyper mobility Issues

Even my tongue twitches

Uptake in my Oesophagus

Lymph nodes in my neck go up and down

Pins and needles and burning sensation

I think that’s all

Any advice would be great

I’ve had a full blood panel at guys today

But my new doctor doesn’t agree with his colleague for uctd

He thinks ptsd

Fibromyalgia

An the lesions just because 😂👎🧠

Thanks in advance

Jade xx

[Echoblue]

Hi Jade, what an awful time you have been having and my condolences for the loss of your mother, such a young age for her. 😔

The not knowing what is causing your symptoms is so difficult, often medics seem to need a diagnosis before they know where to send you to!! I am sorry I don’t know what you have and can’t offer words of wisdom other than sadly it invariably will take time to get to the root of complex cases.

I just wanted to wish you support and all the best for your journey in finding answers. Keep the strength to get there and I hope it is sooner rather than later that you have a better idea of what you are dealing with. It can be as simple as falling upon that one key Consultant that takes your case on and then is the pivotal co-Ordinator to seek solutions from other medics. A good rheumatologist or another type of clinic that could be considered for their multi-disciplinary approach could be vasculitis clinic, again at a major centre (as they are more used to complex cases) is often well placed.

Good luck 🤗 Pam x

[Buckley123]

Thanks Pam

I appreciate your reply a lot

I’m hoping my bloods gave more to say for themselves this time if not god knows the doctors just change there minds all the time and when they don’t know they push for anxiety and stress.

How are you ?

Thanks again

Jade xx

[Echoblue in reply to Buckley123]

It’s sad how we hope something shows in bloods as we know medics really only want tangible “black and white”! But I know exactly what you mean by saying that! The anxiety stress bit made me smile as what comes first?! More likely the stress of not being taken seriously and getting answers is enough to result in anxiety!!

I am in a similar scenario with non typical anything! Have had a pants year like many with pollen allergies and very Brittle asthma resulting in frequent A&E visits ...... you know it’s grim when some of the staff in there start to recognise you 🤦🏼‍♀️

I have had fibro for around 10 years now, but similar to you have a ton of unexplained symptoms. I am just going through the vasculitis route and they think there may be an element of autoimmune going on (there are over 80 different autoimmune conditions!!) Had my first appt at specialist vasculitis clinic yesterday and they were brilliant. They are doing the referrals to other depts and they are so used to working as a multi disciplinary team that it was second nature to them. It was so refreshing to see, hence why I suggested that may be a route to consider in your jigsaw puzzle of life.

All the best Jade and keep us all posted as one piece of information can always be the potential key piece in someone else’s life too.

If we were straightforward in our symptoms we probably wouldn’t be on this forum in the first place!! Pam x

[Buckley123 in reply to Echoblue]

This is true thanks Pam

Best of luck to you too xxx

[Medically_confused]

It could be that you have a combination of conditions. I have Psoriatic arthritis, fibromyalgia and APS and it’s taken a long time to get to the bottom of it all and we’re still not there with the right combo of treatments. Have you had a lupus anticoagulant test to check for APS? It wouldn’t explain all of your symptoms but it could be a missing puzzle piece. Best to get it ruled out just in case. I’m no dr but your symptoms vary a lot so it could be that it’s more than 1 condition like me?

[Buckley123 in reply to Medically_confused]

Thanks yeah I’ve had all the lupus tests

I was told it was ms and then lupus aps sjogrens possible sarcoidosis all my bloods apart from my ace levels are negative.

I’m now being told fibromyalgia.

I’ve had more tests done at guys few days ago maybe something will come up

But my Nan is seronegative aps

And my mum had ms xxx

[Buckley123 in reply to Medically_confused]

The only blood test I’ve had that it positive was ace which is found in sarcoidosis but my neurologist is leading specialist in sarcoidosis and he believes it’s not xx

[Medically_confused in reply to Buckley123]

The lupus anticoagulant test isn’t for lupus (it’s really poorly named), it’s one of the 3 aps tests. If your nan was seronegative APS, I think it would be worth them double checking all three tests again and not ruling it out. I’ve not been treated for a blood clot but I’ve had 4 positive lupus anticoagulant tests yet they won’t give me anything more than aspirin for the blood because I’m lucky enough to have not had a blood-clot yet. It’s crazy lol.

[Buckley123 in reply to Medically_confused]

Sorry to hear that.

It’s crazy isn’t it

Even my brain which you would think would be a big deal and it isn’t mr I can’t find anything (doctors )

I have a list as long as my arm

I don’t understand what they want.

The last doctor told me if you have something it will show in such a way il be in hospital and then they will teat .. grate nice one 😂🤦🏼‍♀️🤦🏼‍♀️

Yes I have had aps tests all negative

Dr kaul did think I may be seronegative aps

But this has since been thrown out by other doctors

The doctors seem to contradict themselves a lot xx