Brain scan finally booked

[Buckley123]

Brain scan finally booked for Tuesday next week ! Xx

[MEGS53]

Hi Jade. Wow, that's good news - who requested it? How are you these days?

[Buckley123 in reply to MEGS53]

Hey meg ! I don’t know 🤷‍♀️ 😂 I think it’s a new neuro as I was dropped from dr mailks clinic but it’s in a privet hospital in Kingston I’m still the same mate plodding along how are you xx

[MEGS53 in reply to Buckley123]

I'm a bit 'meh' to be honest. My muscle issues are much worse, also lots of joint pain. My GP has been sooo good, pity I can't say the same for my rheumy. GP's referred me to another rheumy at our small local hospital, fingers crossed (but I might have to wait a while for an appt - especially with CV-19). Take care, xxx

[Buckley123 in reply to MEGS53]

My muscles are terrible atm too it’s definitely my worst symptom they twitch jolt sore stiff and weak in hip griddle shoulder griddle and neck flexor weakness xx

[MEGS53 in reply to Buckley123]

My GP's prescribed Pregabalin (started at 50mg/day, now just starting 200mg/day). It is helping - my daughter says I was walking like an old woman before Pregabalin. Don't daughters have a fine way with words!! It is having side effects though, but I'm hoping they'll lessen with time. Maybe you could suggest a trial to your GP? xxx

[Buckley123 in reply to MEGS53]

😂 don’t they just !

My gp is to scared to move sideways until I’m diagnosed 😂 she will be waiting a while I feel 🦓🦓

[MEGS53 in reply to Buckley123]

I'm very lucky to have such a good GP. He was reluctant to prescribe while my rheumy was in charge. She dropped me recently, saying she knows somethings very wrong, but she can't put a name to it or know another consultant who can help!! So my poor GP's stuck with me, which I prefer tbh.

[Buckley123 in reply to MEGS53]

Funny that my neurologist dropped me too we must be a pain in the bum 😂😌😆🦓

I got a new one though you going to get someone else xx

[MEGS53 in reply to Buckley123]

I've been given several 'labels' - 'very complex', 'interesting', 'rare disease symptoms'....they haven't said P in the B yet, but maybe I just don't listen!!

Yes, I hope my new rheumy will be better - the last one was based in a large teaching hospital and I think her ego was bigger than her diagnostic skills. My next one's based in our small local hospital so, hopefully.......

Please let us know how you get on with the scan. Take care, xxx

[Buckley123 in reply to MEGS53]

Yes I mean pain in the bum to diagnose! But of a zebra 🦓

Yes I think a smaller hospital is better you know I’m in London and I don’t have much to say for it tbh .. crap tbh !

I will do xxx

[Ceri-NorthWales]

Glad you've got it booked. I'm still waiting, been waiting since March 20th. But it's good to see some healthcare FINALLY going on. Hope you're doing ok x

[Buckley123 in reply to Ceri-NorthWales]

Thanks I hope you get one soon but I am over due by around a year and a half 🙄😂❤️

[Ceri-NorthWales in reply to Buckley123]

so just ever so slightly over due then 🤦‍♀️ hope it goes well for you

[Buckley123 in reply to Ceri-NorthWales]

Just a tad but at least it’s in a privet hospital 😅 winning thanks nhs xxx

[KayHimm in reply to Buckley123]

Jade - weren’t you with Dr. Kidd who specializes in neuro inflammatory disease?

Glad you will have your repeated MRI soon.

XK

[Buckley123 in reply to KayHimm]

Yes but he won’t tell me anything I’m still under him ! Atm but I see dr Malik again privet because I couldn’t get appointment with Kidd he put me on steroids told me I had sarcoidosis said he will see me in clinic then dropped me from his clinic to this new doctor !

Dr Kidd won’t diagnose me I’m on hydro and I would just like to know if my brain is worse I’ve been given this appointment so I’m going to take it !

The new doctor won’t diagnose me he said he’s unsure but wants new scans and I’m a year or so behind when I’m meant to do every 6months !

Do you think I’m making a mistake x

[KayHimm in reply to Buckley123]

I am not clear about this. It was the MS doctor who put you on steroids, right? Is that Dr. Malik?

I don’t think you are making a mistake but asking the doctors to do what they are unable to do. To give you a diagnosis they are not convinced you have would be negligent and could be traumatic. I have personal experience with a family member with an abnormal brain MRI and also witnessed how neurologists handle unclear cases here on the forum.

There is likely no clear guideline stating you need an MRI every six months, particularly if that means having one during a pandemic.

I think you are not seeing the situation accurately. The new doctor is not unwilling to diagnose you. He simply can’t. I know that is a hard thing to accept. But going to too many doctors may not be in your best interest. It doesn’t give one doctor a chance to get to know you and the complexity of your case.

Dr. Kidd, I thought, agreed with Professor d Cruz that you had UCTD, no?

Are you going to stay with this new neurologist?

[Buckley123 in reply to KayHimm]

I don’t know Kay it’s all a mess ! So my ms specialist yes gave me the steroids

For optic nerve issues he believes to be neuro sarcoidosis promised to see me on the nhs and didn’t have availability so I’ve been sent to this new neuro!

Dr Cruz thought uctd with myosotis which made sense because of the hip griddle weakness and shoulder griddle weakness neck flexor weakness.

But bloods came back negative he discharged me after one appointment on the nhs back to dr Kidd and said look at sarcoidosis given my high ace levels.

I see dr Kidd again

Was annoyed Malik gave me steroids I asked if he would look in my eye for a second opinion he said no.

I’ve asked why my muscles are weakening it’s the disease is what he says he said your uctd .. I told him dr Cruz disagrees he said he doesn’t and sent me back to his care he’s a busy man..

I was told from the start nearly two years ago I would be closely monitored as it’s not one or two it’s many lesions.

My optic issues have flared twice with no answers.

Dr Cruz should have sent me for a biopsy of the muscle to rule out myosotis.

I understand not knowing but treating should be a priority

And it isn’t working my muscles are worse and my optic issues are coming back.

No explanation of high ace when others have treatment for less xx

[KayHimm in reply to Buckley123]

It really is difficult, Jade. You are right that treatment would be good. But they can’t treat if they don’t know what they are treating. With my cousin’s daughter they did treat her optic neuritis with IV steroids even though they were unsure of diagnosis. You could ask why you are not being treated. That may put your mind at ease.

I am glad you are getting the MRI soon. Let’s hope there is no progression.

As for the muscles, I don’t think they usually biopsy a muscle unless the CPK is high. Maybe that is not always the case. I am going on the testing my rheumatologist has done if I have had muscle pain.

Just ask the doctors the questions you have posed here. They will do their best to answer.

You are in a particularly tough spot. I know it is not easy to have so many opinions.

Xk

[Buckley123 in reply to KayHimm]

Thanks Kay on my understanding cpk isn’t raised always In blood work a lot of people rely on muscle biopsy and mri of the muscle when cpk and antibodies are not present.

My friend who has ms couldn’t believe I was still under investigation 🙄 she’s reckons I have have multiple scarring on the brain muscle weakness and optic neuritis given my family history it’s ms.

Tbh I’m sick of it all now I know people have to wait a long time but Even with sarcoidosis I watched a presentation from dr Kidd he done in lock down .. where the brain is involved we always treat we over treat .. .. .. another lady told me her ace levels are 78 and he was so concerned he put her straight on steroids.. well mine are 97 so he’s not concerned about me .

I had a weird episode that week, I was doing my mascara and my head spun ears blocked and thought I was going to pass out but I couldn’t expand my lungs I emailed him as a few times now I’ve not been able to breath it’s like my chest stops working. Anyway he told me I was dehydrated.. but I drink 4.4 litres of water a day (I brought these one bottle a day 2.2 litres and I drink two of them) so I can’t see how I’m dehydrated 🧐 anyway I’m moaning away !

Just doesn’t feel me with confidence xx

[MEGS53 in reply to Buckley123]

I totally agree, Jade. Hang on in there, xxx

[KayHimm in reply to Buckley123]

Jade - The problem is because you don’t have a diagnosis the neurologists all agree on, you rely on information from people other than your doctors. Your friend says she can’t believe you are still under investigation. I don’t know what that means. There are only so many investigations that will aid in diagnosis. When they do all of those, watching the patient is sometimes the best approach. I think if your friend had experience with other neurological diseases and various autoimmune diseases, she would know this.

I understand your extreme frustration. But I think you need to direct your questions to your doctors. Dr. Kidd is an expert in neuro inflammation. He is the perfect person to answer whether it is better to treat and what the risks of treatment are.

You might want to ask what they think the brain lésions are caused by. If Dr. Kidd thinks you have UCTD, he may think they are related to mini clots. I believe Dr. Kaul thought you looked like a séronégative APS patient. This is different from the lesions your friend with MS refers to. And the treatment is very different.

I think what you really need is answers to your specific questions. Right now you only have opinions about a diagnosis, not facts. That is why the new neurologist said he wants to wait to see the MRI. That says to me you are still not a difficult case to diagnose.

You are not moaning. But you have every right to moan. Your doctors know how hard this is. I wish they could help you live with the uncertainty

[KayHimm in reply to KayHimm]

and assure you they are doing everything that needs to be done.

Let us know how your MRI turns out.

Xk

[MEGS53 in reply to Ceri-NorthWales]

Hi Ceri. I'm sorry to hear you're still having problems. And things are moving even more slowly now with CV19. Hopefully you'll get the help you need soon. Hang on in there!

[svfarmer]

Hope all goes well for you x

[Buckley123 in reply to svfarmer]

Thanks mate how are you xx

[svfarmer in reply to Buckley123]

I’m doing ok thanks at the moment anyway 😂

[Buckley123 in reply to svfarmer]

Good pleased to hear it xx

[audreypamela]

Oh my goodness. Listening to you all struggling to get a diagnosis I feel your pain.

My symptoms started 2 years ago. Buzzing in my feet which quickly spread upwards. I know have constant muscle twitching and cramping all over. I vibrate. I shake.

Neuro have discharged me stating it's likely anxiety related. It certainly isn't.

MRI scans of my spine are all normal.

I've had 3 nerve and muscle tests which are normal. 2 of which I paid for myself. Thankfully MND has finally been ruled out.

I have no idea where to go from here.

My gp doesnt know what to do.

What the heck is causing all this.