Advice wanted please I’m lost

[Buckley123]

Hi all I’m currently undiagnosed with anything.

It all stared when my mum passed away in July

My eye started to swell and twitches

I went to se the opticians who said my pupil wasn’t contracting correctly and asked if I had any neurological issues in the family ( mum had ms died two month later previous aged 47)

I want to Morfields eye hospital and they disagreed eyes fine.

I started to get headaches and pressure in my neck so I after many back and forth with nhs I used my inheritance to get a brain scan privately.

I have multiple white matter lesions non specific scar like lesions and diagnosed with ms and sent to a ms specialist.

Who said straight away it wasn’t ms but sent me for tests ie lumber bloods etc looking for lupus do ana everything full screen all negative I had a pet scan which shows uptake in lymph nodes in my neck and lumps near my ovaries.

After the ms diagnosis my muscles twitches a lot all day but worse at night also jolting of limbs also worse when I am stressed my neck feels jittery and my muscles ache a lot

my mouth is dry and frilly and eyes are sore I also have aminea with b12 deff and I have shots every 3 months for this

I went to see doc Kaul in London lupus and he said he thought aps and I’m still waiting for blood results he also said I have hyper mobility

If anyone has any and I mean any suggestions I would love to hear them as I’m getting worried I’m 29 with 3 kids I just want to move on it’s the not knowing for

Me xx

[Lure2]

I replied you 9 minutes ago on another question here.

[Buckley123 in reply to Lure2]

Thank you it hasn’t pinged up il have a look for it now xx

[Lure2 in reply to Buckley123]

I am sorry I did not address it to you in person.

Kersitn

[HollyHeski Administrator]

Hi, its quite common fir MS symptoms to be confused with APS symptoms.

This is the link re Prof Hughes report for rheumatologist.

bit.ly/2uBC8rs

I also suggest you try and get your thyroid, ferritin and iron levels checked. Under pinned post is link to full blood testing.

Dr Kaul, is on our list as an APS specialist, so you've found a good one.

The other thing with APS is, we tend to get other autoimmune issues, I myself also have Sjrogens syndrome, again symptoms can differ from one patient to another.

Good site to look at is GHIC/world, where Prof Hughes himself gives lots of case histories - I think you having a read, will give you hope and you will relise your not alone.

[Buckley123 in reply to HollyHeski]

Thank you xxx

[MaryF Administrator]

HI there, sorry about your Mum, that must be very difficult and upsetting for you, and also the confusion over your health problems, you can ask your doctor to run the tests for Hughes Syndrome/APS, as sometimes people turn out to have Hughes Syndrome/APS instead of MS, some have both. There is information here, and also the blood tests:

ghic.world/hughes-syndrome/

ghic.world/hughes-syndrome/...

dailymail.co.uk/health/arti...

Often in families there is a history of strokes and blood clots at an early age, and if female, multiple miscarriages, also relatives past and present with other autoimmune diseases including Thyroid problems.

If you GP is helping you, it is also a good idea as well as the tests above, to test your B12, Folate, Ferritin, D and a full Thyroid panel, (these are not great on the NHS, the Thyroid tests, but still a good starting point. This way you can rule things in and out of the picture. MaryF

[Buckley123 in reply to MaryF]

Thank you Mary xx

[GinaD]

I too have some hyper mobile limbs. Mt PT told me years ago there is a link between hyper mobility and autoimmunity.

[Buckley123 in reply to GinaD]

Thank you GinaD I’m just struggling to get any kind of diagnosis even with the brain lesions and neuro symptoms xx

[simone1]

Hi

I have APS. I was diagnosed by dr Kaul. He is very good, so be confident you are in good hands.

[Buckley123 in reply to simone1]

Thanks for your reply I was wondering do you have any muscle burning issues ? Z

[simone1]

I see a nutritionist for my symptoms and I found magnesium citrate helps with my muscles cramps and pain. It is better to see a nutritionist who will help you in relation to your diagnosis.

[Buckley123]

Thanks xx