Part 2

[Buckley123]

Please read after part one

[Hidden]

Hi there Buckley123. Sorry but can you post some more of your medical history for us because it’s very hard to recall these things about members off hand.

Are you seeing a rheumatologist too because many neurologists will just say that anything not immediately/ primary neurological ie not MS, not MG, not Parkinson’s or Epilepsy etc is functional neurological disorder (FND)? You really want to avoid an FND like the plague if possible because it will access you little or no support and will also guarantee that you won’t be taken seriously by any doctors.

So if you do have a rheumatic autoimmune disease or if one is suspected then you need to see a rheumatologist first, not a neurologist.

My GP is adamant that my migraine type headaches relate to my neck (cervicogenic migraine) rather than my brain but I’m 56 and this is obviously a more likely cause for me due to arthritis and confirmed prolapsed discs. Unusually I’m on a Trigeminal Neuragia drug called Carbamazapine/ Tegretol so she has increased the dose and put me on slow release tablets from yesterday. My neurologist suggested this too so they are like minded so far.

The rheumatic disease that most springs to mind when I read your symptoms is Sjögren’s so if you have anti Ro, La antibodies this shouldn’t be so hard to diagnose. If you don’t then please push for a lip biopsy to confirm or exclude.

Best of luck

Twitchy

[Buckley123 in reply to Hidden]

Thanks twitchy my faces swells one side and my muscles ache and burn and my neck feels as if it’s hard to keep still at times I have brain lesions non specific

Pins and needles twitchy muscles jolting limbs dry eyes and mouth frilly tongue if that makes sense headaches.

I gave days where I feel great and days where I feel like I have flue coming I go hot and cold and feel awful and then next day no flu

Pain in my joints my hip joints are damaged and bone marrow change in my hips. I’ve always had anxiety and b12 shots.

Pain in my muscles and everywhere seems to travel no day is the same even today started in my left shoulder and now in my right I know it sound like I’m mad xxx

[Hidden in reply to Buckley123]

It doesn’t sound as if you’re mad at all! But you have to bear in mind that you lost your mum to MS so this idea that you too might have it is will be well established in your mind. And the mind can take on very complex patterns and symptoms due to trauma - stuff that we don’t even really understand or can be completely unaware of.

Having read your previous posts now I see that nothing has shown up at all that helps a diagnosis and I don’t think this is remotely “lucky” - as a few have said. In fact I hate being told I’m lucky when I have such sinister symptoms going unexplained!

It must have been awful to lose your mum this way.

It is possible, but very unlikely, that nothing has shown up and yet you still do have an autoimmune disease. I do think sometimes anxiety triggered by loss or trauma can trigger very real responses that can be classed as psychosomatic. Especially if doctors have misdiagnosed or undiagnosed you with conditions like MS previously or have suggested a Lupus.

All this said - I’m very resistant to the diagnosis of FND/ conversion disorders unless absolutely everything has been excluded.

So, given your history and the possibility of seronegative rheumatic diseases, you may want to read this link and also consider Ehlers Danlos Syndrome as a possibility. Sjögren’s can start with neurological symptoms and 50% of these sufferers will be seronegative. So I’d say this is a diagnosis still worth pursuing over Lupus and others if you feel adamant that the loss of your mum to MS is not the reason for your symptoms.

Trust your deepest instincts here.

Finally if you can’t be sure that your symptoms aren’t related to bereavement then you may want to find a good bereavement counsellor who can help you and see if this improves your symptoms.

Anyway here’s the link I mentioned earlier.

hopkinssjogrens.org/disease...

[Hidden in reply to Buckley123]

“Many Sjögren’s patients with devastating neuropathies have delayed diagnoses, because the blood work does not show any evidence of abnormal antibodies. The work, at John Hopkins, shows that nearly 50 percent of Sjögren’s patients with neuropathies lack these antibodies. Using the expertise of the Rheumatology Core Laboratory, John Hopkins Sjögren’s Syndrome Center, are seeking to identify novel and previously unidentified antibodies, which will provide insight into relevant mechanisms, and suggest therapeutic opportunities.”

[Buckley123 in reply to Hidden]

Thanks twitchy

I’m so confused with it all they are the ones who told me I had a reloading remitting condition as they can see clearly previous scaring.

I’ve gotten so frightened with it all I don’t now know what’s what and hoping to draw a line under it tomorrow as I’ve done all I can to push for a diagnosis and if he’s not worried again il leave it in his hands and it will come to light if there is something x

I have a really bad relationships with docs as I watched them get it so wrong with my mum so much.

First thing my neuro said to me was Liston don’t worry you don’t die from ms.. first thing he said was a lie and now I don’t trust anyone and it’s becoming a really lonely place to be.

My mum was 47 when she died after 7 years of not being able to move she suffocated in the end and choked on her saliva I was with her and I see her up to 3 times a day for 6 years. So maybe anxiety but it’s also on findings and what they have told me and now trying to take back. I just wish I knew xx

[Hidden]

So tragic for you Buckley. And I hope you know I don’t consider you lucky or overthinking things in anyway at all - particularly as you keep getting different opinions from different doctors and have completely understandable trust issues with this entire profession now.

Anxiety is an understatement and a half. What you have, it seems to me, is a combination of very normal grief and very reasonable white coat PTSD.

So when you see the next neurologist I think you need to explain this to them and acknowledge that you’re still grieving while reeling from the contradictory opinions of the consultants you have seen. Hopefully this consultant will be the good one who will know how traumatising it is to be diagnosed and then undiagnosed etc - particularly in the light of what happened to your mum.

I wouldn’t rule out with them that your symptoms might be related in part to the grieving process under the very difficult circumstances. But I would also say that you feel they are more than this and that you badly need clarity because of the impact this is having on you and your young family. After all grief can be the trigger that unleashes autoimmune diseases so you may well not have Lupus but you might have seronegative overlap or relapsing/ remitting MS. There is so much potential for misdiagnosis with many autoimmune diseases and I suggest you explain that this is your concern. All most of us want, need and deserve is to feel believed and taken seriously by doctors, friends and family.

Please let us know how you get on. Xx

[Buckley123]

Thanks you twitchy for taking such a time to reply to me.

I had all the tests for ms lumber puncture and everything came back negative x

I think my consultant wants to watch and wait see what my next mri says in October.

Maybe I should go to see someone about my mum see if I feel differently in the mean time and I will have a honest chat with my neurologist tomorrow although I do think it would full on death ears as he isn’t interested he dose the even look at me just looks dead straight at the computer 😣🤷‍♀️

I asked my grandad what he thought on the situation he said it would obviously not help with my mum and the doctors have handled it badly given the situation and have taken money for the test and then withdrawn after it’s cost me all of my mums inheritance.

And even now I’m meant to be on the nhs but my consultant won’t refer me to have further tests unless I pay.

Thanks again twitchy I will keep you updated. X

[Hidden in reply to Buckley123]

Well as there are no real treatments for relapsing remitting MS and the treatments for CNS Lupus and Sjögren’s are pretty aggressive, I think that in your shoes, I’d be inclined not to spend anymore money on anything else health wise.

I guess I’m a believer in wait and see and meanwhile ask your GP to refer you urgently for bereavement counselling as you obviously feel very traumatised by your mum’s premature death and by the way doctors have treated you. I do too to a lesser extent although my parents both died suddenly a good bit older than your mum both at 73 - and I haven’t spent my money on seeing doctors bar a couple before my diagnosis was changed from RA to Sjögren’s.

On the whole I think I have found more NHS doctors whom I trust than ones I don’t. But the ones who have let me down have caused some trauma and counselling did help me find ways to deal with this.

My worst tendency is to second guess what’s wrong or what doctors will say is wrong and it’s not a good tendency at all. It’s best to just explain what you are thinking and feeling as directly as you can without adding emotional baggage but not allowing them to stare at their computer screens and ignore you either.

If they do this you could simply say “please could you look at me when I’m speaking to you” and then smile when they do. On the whole I have found that friendly honesty and directness will get you further than bottling up or being too intense.

It’s a very hard balance to strike which is why I say that it’s best to be as open and forthright as possible without tipping into either tears or rudeness. My husband says that I tend to be either too defensive or too jokey and then go away fuming!

But I’m learning I think - with some help from him and from people here Xx

[Buckley123 in reply to Hidden]

Thanks twitchy I just can’t work out with my muscles ache so much I guess I’ve got myself all worked up maybe.

Going to see him again tomorrow if no further forward then I’m going to just wait and see what happens.. I think I cry a lot in my appointments it’s all to close to my heart cxx

[Hidden in reply to Buckley123]

There’s nothing wrong with crying appropriately Buckley - which you are of course. But try to remember that this doctor is a neurologist not a psychologist so they may not have the skills to react to tears appropriately. 🤗