So I'm not sure when I last posted but I have a telephone consultation with Proff D'cruz on 24 March In anticipation of this he had ordered Brain and Spinal MRI (arranged through my local hospital where there is a 6mth waiting list for MRI s some how on his advice it was organised in 2 weeks) The last time I saw him he said I had a Demyelinating syndrome caused be an underlying vascular disorder I had demyelination from C2 to C6 and it was treated with cyclophosphamide and thank goodness I recovered He told me if I ever had any Neurological symptoms again I should seek emergency help and I've been trying to do just that for the last 12 months I don't think the local Rheumatologist has heard of such a situation and took what I told her with a pinch of salt. Started to feel so ill didn't know if I could attend my physiotherapy appointment on Thursday but didn't want to miss out (been waiting a year )and she had the results of my MRI Demyelination C2, C3, C5, T6, T8, T10, T11, Also demyelination of the optic nerves MS was ruled out as there were no MS plaques in the brain just multiple white matter hyper intensities thought to be vascular My Rheumatologist is away for 4mths and the Physiotherapist said I cannot wait that long for treatment ( said I failed all her base lines whatever that means) It's only 2 weeks until I talk to Proff D'cruz but he will not be able to contact my Rheumatologist so really don't know what happens next Feeling horrifically ill of course! My worst nightmare is that I get worse and end up in my local hospital which is truly awful They have been in special measures for the last 4 years after so many Never Events ( for anyone not familiar with that term it means things that should never happen) They came out a year ago and I can tell you it is every bit as awful (looks nice now though Had a refurbishment!)
MRI Results: So I'm not sure when I... - Hughes Syndrome A...
MRI Results
How awful for you & frighteningly.I would try to speak to Dr D’Cruz as an emergency or ask your GP to speak asap.
I don’t know whether it’s possible & it’s cheeky, but I would leave a message for Dr D’Cruz at the Lupus Centre at London Bridge Hospital & write a letter to him there! It doesn’t matter if you are only NHS! Any good doctor will not mind! This is an emergency!
Words of sympathy are useless so be proactive as you need help now!
With good wishes,
Ros
Thank you If my eyesight gets any worse (I have double vision from one of the lesions in the neck, not sure which one she said it was?) The Trigeminal Neuralgia ( which may not be traditional TN as C2 delivers nerve signals to back of head and C3 sensation to face) Is definitely worse and the chocking episodes (I believe that's from C2)I'm going to see how things are over next 48hrs as the thought of being admitted to my local hospital chills me to the bone Just the thought of them performing a lumbar puncture ,probably do it with a rusty nail haha
Get all this info off to Prof DCruz ASAP, as Ros says use London Bridge if you have to!
I was a patient at St Thomas and phoned Proff. D’Cruz at London Bridge (where I had originally been a patient) once in an emergency and he actually rang me back himself, that evening He is very good. Good luck 🤞
I hope u don’t mind me asking. What neurological symptoms are you having? I’ve just seen a neurologist and she ruled out MS thank goodness. She just thinks my symptoms are due to APS, Lupus, Sjogrens and/or Fibromyalgia.
I wish you luck 🍀 x
Hi Wendy the first Neurological symptom I suffered was severe optic neuritis for about a year it was pretty relentless I was referred to a Neurologist had an MRI of my head that was clear with a follow up appointment arranged for a year later However after hearing Proff Hughes on radio 4 talking about the misdiagnosis of people with MS who have had repeated miscarriages and clots I travelled up to London to see Proff D'Cruz by this point walking was like trudging through mud and my finger tips couldn't differentiate between hard things soft things hot cold etc. couldn't fasten buttons I was admitted to ST Thomas's hospital spinal MRI revealed demyelination C2 to C6 I was diagnosed with a Demyelinating syndrome caused by an underlying vascular disorder was treated with prednisolone infusion then cyclophosphamide took four years to get better but then had approx 15 years remission until 2 years ago when it all started again when my GP decided I didn't need warfarin
Bless u sounds awful. Good luck for the future xx
nn.neurology.org/content/nn...
Retweeted by Dr Jason Scott knight. ( APS expert Rheumatologist University of Michigan)
Thank you said on MRI probable Neuromyelitis optica I had a blood test for NMSOD in December but apparently the results were lost so have had them repeated
Yes, sounds like it could be. This is a very new finding in research. Hang on to this article and show it to your specialists.
Hi Kelly Yes there are a few papers on the BMJ British medical journal relating to Neuromyelitis optica mostly in relation to SLE and Sjrogens Last time I was really ill (nearly 17yrs ago) with the same thing Proff D'Cruz Hypothesised that it was in relation to micro embolisms affecting the central nervous system Although at that point I don't believe any papers had been written (That man is a genius)
He is my new specialist also. I was under the care of Dr Natasha Jordan at the London Lupus Centre, and when she made the decision to devote her time to her NHS practice full time ( which is in Cambridge), she advised me that she felt Prof. David D’Cruz would be the best fit for me with my particular presentation of APS.
My last appointment with her was Dec 6 th 2019. I was actually her very last patient appointment.
I am technically already a patient of Prof D’Cruz, as my files transferred over, but because of Covid, have not had the follow up appointments as needed.
Im hoping you get the help you need soon with regards with inflammation.
These misbehaving neutrophils Dr ( Professor) Jason Scott Knight is so focused on in his APS lab in Michigan potential of great importance to APS and lupus patients.
It was interesting to see now they may have a role here in NEuromyelitis Optica.
Proff D'Cruz is a lovely man, He has plenty of videos on you tube if you haven't seen them. I hope you get to see him soon and you are as well as you can be. Great papers on BMJ written by many Rheumatology DR's from St Thomas's hospital, I'm glad there is still ongoing research maybe one day there will be a cure
I’m so sorry to read about your current issues. How frightening! I hope you have written to or spoke to Dr. D’Cruz. I’m going to read Kelly’s link. I have nerve issues due to lack of blood flow or micro clots. No one knows because it cannot be imagined I’m told. I have multiple nerve decompression surgeries on my arm and have loss most my hearing in both ears due to the lack of blood getting to my nerves so while my situation is not nearly as serious as yours I do understand your worry. I wish for you to be heard by your doctors soon. Please keep us up to date.
Hi Thank you for your reply Sounds like you've been through so much I'm so sorry. I have actually been very lucky so far (fingers crossed) I suffered many life threatening DVT's but got through without any ongoing problem then I had the first Neurological attack which was pretty severe and again lived to tell the tale Ha-ha Then had around 15 uneventful years until the new GP stopped the warfarin!! DVT ,stroke now the demyelination again !
That sounds like medical malpractice. That’s horrible. I had not heard of the demyelination being a symptom of APS. It never ends. You sound like you have a very positive outlook and strong desire to be well. Please keep us up to date. I will be very happy to hear from you after you see Proff. D’Cruz.
Hi mully,
We talked 7 years ago. If you are now not on Warfarin Proff D´Cruz can test you for Lupus Anticoagulant.
This Dr knows APS and perhaps understands that perhaps MS is misdiagnosed and you only have APS and some other autoimmun illness perhaps. You perhaps need Warfarin again. Under 3.0 you got those symptoms back 7 years ago. I must be between 3.5 - 4.0 to be without my neurological microembolies. Nowadays the Specialists know about microembolies and that they are difficult to show up on a Scan very often. It is often when you try a special number of INR (rather high) you find if you have APS and need anticoagulation as the symptoms disappear.
Fever
Just seen Professor Cruz with a result I think ?
Good news at last
MS or APS or both
