Hi all I’ve been to the royal three hospital today and finally fingers crossed I have found a neurologist who’s taking it seriously.
He wants me to transfer to his clinic and have a 3rd brain scan. He agrees not ms or sarcoidosis but lupus or lupus like keeps coming back up also the hyper mobility he was very interested in this and said Neurologist are starting to get involved in hyper mobility as it can affect the nerves in around the muscles ect. He Liston and said I understand let’s stop seeing all these privet doctors and let’s get you in my clinic there are so many tests you haven’t had done yet. He Said maybe Sjogren also he did he could also biopsy the brain if needed ☝️🤦🏼♀️🥺
All in all I hope to get a diagnosis soon I told him the only thing I could fit was lupus and he tried me on some medication in the pic see if I’m more comfortable anyone else tried these ?
I’ve also got doc curz as a second opinion for doc kaul I’m hoping he can help further too all in all a more positive day.
Oh and my neck is going into spasm so maybe that’s why it hurts
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Buckley123
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Now I don’t wish you to be ill, but finally , someone is listening. This is the medication most start off on, which strongly suggest he suspects a connective tissue disease.
I’m surprised you didn’t get this same outcome from your appointment at London Bridge.
Well done for your continued fight to find answers . You can ask your gp to refer you there xxx
Buckley, I couldn't be more pleased for you!! Now that's more like it. You are getting somewhere. An appointment like that can give one a real high -- barring the thoughts of a brain biopsy that is... : ) But I have heard that the brain does not feel pain, so perhaps some comfort in that thought?
As Lisalou says, Hydroxychloroquine is exactly the first medication that is tried on most anyone with suspected connective tissue disease. Many of us here are on that. It is especially helpful for small joint pain and stiffness I found.
I remember you saying you had the twitching a lot and all over. I have had that too. Still do, but it is quite a bit less now. Granted, I've been on the hydroxy for over a year and Mycophenolate for nearly a year. But it all points to if you start seeing positive results on this that they are finally barking up the right tree with you. This is great news. Thanks for sharing.
Thanks panda I hope so as I said to him you an have these things and have negative blood work but what ever it is is marking my brain and I’m not happy to just leave that surely more should be done ✅
He agreed and was quite honestly annoyed I think at my care he was a ice man who Liston he had no answers but he was realistic and said we can do so many more tests ect so I’m pleased for that xx
What you said was exactly what to say to him, sounds like! I'd have him do every test he can think of, if it were me! Lucky you! (Well, that's relative -- I'm sure you know what I mean.) : )
Someone with this kind of interest in what's going on will have his eye on the bigger picture and will have obviously come across many other cases with sero-negative blood. This is pretty positive Buckley. How great that you're finally pleased -- me too!
By the way, did he mention to you that you need to get a baseline eye test? If so, ignore me. If not, you need to go to any optician who can run the proper testing for someone taking Hydroxychloroquine before you start it (or as soon after if you've already started it) and then yearly after that. Also get an Amsler Grid from the optician (or online) and do it at home once a month, just to make sure nothing is going awry. With a high dose over many years it can deposit in the macular. But the doctors are guided now on what the doses should be. Very rare incidence of problems.
It was a neurologist who finally diagnosed me with lupus and RA, lovely doctor who spends time with me and listens to what I say, bloods are checked every 3 months.
I’m on the hydroxy..as well as methotrextate both have helped no side effects.
Good luck with your journey, hope you find some answers.
My first port of call was a Neurologist, which was invaluable. He even knew I should be under Rheumatology, but ordered a million blood tests, nerve conduction tests and special syndrome tests too. I've never had to see him again, but that appt stays in my mind as the very one that got the ball rolling in the right direction. I've been in good hands ever since. Wishing the very same for you.
I’ve just been to a chiropractor for my neck and she checked my Reflexes and told me I need to tell my neurologist they are Hyperreflexia I don’t suppose you know what that means xx
I didn't actually know what hyperreflexia meant, but a quick google showed that it is defined as overactive or overresponsive reflexes. Causes and outcomes are on this wiki page. It reads a little grim... Did you have a spinal cord injury at any point in your life? I'm so glad you're with Neurology.
That's great news Buckley..congrats to u for your persistence n stamina!!
Hydroxychloroquine is the first med..well it was the first one for me..I've been on it for a couple of years now. Do have regular eye tests as panda has said. The only other problem I had when I started was heartburn which I don't usually have..it does say that u can't take heartburn remedies for four hours before or after taking it..so I decided to take them with milk instead of water..that got rid of it!! Xx
Your welcome..do post up any questions about the meds because they seem pretty standard for us!!
Tbh I'm not too good at the mo..despite being on heavy meds my lupus is still to active for my dermys liking..he wants to increase my immunosuppressant but I've got high blood pressure..something I've never had..n it's a side effect of the very tablets he wants to increase!! I've put everything on hold until I get on yet another blooming tablet for hypertension from GP!!
On the plus side..I've had a little walk up the hallway in my bungalow today..I'm usually sitting down..but when I can I get a little work out!! 🚶👀💜Xx
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Feeling a bit lost and confused...
lupus flare or long Covid?
Newly Diagnosed
