Just had a letter

[Buckley123]

My consultant just sent me a letter blaming anxiety for my neurological symptoms.. I guess it’s not the brain lesions causing it my face swells and tongue I guess it’s all anxiety

[Lupiknits]

I’d like to reach in and give you a mum hug 🤗 I’m so sorry, you are not the first, and you won’t be the last, to be dismissed like this. Then they wonder why we feel anxious? I hope you can pick yourself up and keep going. Please do.

Keep the selfies, no matter how grim you look. They are useful because so often it’s possible to look “well” on the day of an appt and you can show them. I took a horror picture of my glowing butterfly rash today.

[Buckley123 in reply to Lupiknits]

Thanks so much for your lovely reply ( I thought I has replied till now ) I do take pics

Not much to see my face is nearly always like this and I do get redness of the cheeks at times but more like flushing when I feel like I’m coming down with flu but don’t .

My lymph nodes were picked up on pet scan as ‘uptake’ and lumps near my ovaries ( apparently nothing although it did say correlate with ultrasound ) my neurologist said no.

But I do have a ent in Thursday so hoping to get somewhere although I am not hopeful this is the same man I see privertly to speed things up and then when my gp wouldn’t send a referral for the nhs he just ignored me emails calls ect just took my money so I had to pay to see my neurologist again for him to do a referral to him via the nhs. Which has taken since November and I’m not sure he will do anything at all Thursday xx

[Buckley123]

Thanks my mum passed from ms in July two months later I was diagnosed then told lupus then told aps maybe sarc now it’s anxiety I do feel anxious as my mum was 47 years old but it dose not account for all my symptoms xx

[Lisalou19]

So IF it’s anxiety! What are they going to do about it? 😡

I was sent to mental health. I have a copy somewhere of my report, if you want to send me your email address I will happily send you a copy, it makes a good read and I was so happy that I went to my assessment. X

[KayHimm]

How are you dealing with the conclusion? Are you considering going to the APS specialist? Could you post the letter? You have been through so much. You need support.

[Buckley123 in reply to KayHimm]

I’m trying to decide who to see I have ent appointment in Thursday so really am hoping that I get some answers then if not I might go see dr Cruz but I’m out of money and no one will help me I spent all my mums inheritance and I’m being looked at as if I’m mad even though they made the initial diagnosis of ms then lupus .. possible aps ect ect now nothing I have cared for my mum for 7 years in a nursing home up to 3 times a day then watched her suffocating

I’m trying my best to be positive but I’m sure you all know it’s worrying when you know something is wrong and nothing is done to also know it’s Attacking my brain is a massive worry considering I just watched my mum with a neurological disease since I was 5 x

[Buckley123 in reply to KayHimm]

I have also posted the later xx

[Buckley123]

I am going to it’s just hard atm I have three small kids and I haven’t even grieved for my mum yet and no one cuts me slack at home because I’ve seen all the doctors an they can’t see what’s wrong even my partner who was a big help now says it’s in my head xx

[Shorthouse]

You get anxious because you are ill ....please be strong don’t listen to them .its because drs don’t like to admit when they don’t know a i stuff.

[Buckley123 in reply to Shorthouse]

Thanks my Ana is negative and as are all bloods just so confused and worn out already xx

[Goldyukr]

I was told the same thing a few years back, right before I found a new neurologist that took me seriously and started me on the road to a real diagnosis as well as medicine that put me in remission for a year and a half. So don’t lose hope. Sometimes we do have to sit back for a little while until we have the strength to fight again. That’s normal. Then you get reinvigorated and can start looking for answers. Hang in there.

[Buckley123 in reply to Goldyukr]

Yes it’s hard not knowing I think they think I’m this anxious mess I do come over overwhelmed in the appointments because it’s too close to my heart to soon after my mum. I find it hard to talk about it in person I found her death horrific.

Most of the time I’m a really strong person I have changed my life around ie gym clean eating got rid of a lot of stress ect ect I’m not overly concerned I just want to protect myself and my kids from seeing what I see and going through what my mum did. A lot of these doctors don’t care and a lot are over worked and even more have no sense and get it wrong a lot I’ve watched it xx

[Goldyukr in reply to Buckley123]

I’m so very sorry to hear about your mum. What a terrible loss and then for you to get sick I’ve found that my faith has helped me more than anything through all that we have gone through. My family doctor is always surprised that I’m smiling. If you ever want to chat about that feel free to private message me. Wishing you the best.

[Buckley123 in reply to Goldyukr]

Thanks xx

[miccika1]

If I didn't read the letter i would be pissed off, but I did and saw no anxiety blaming your symptoms. Did you interpret his/her comment that you remain anxious about it as his/her admission that that's the cause? I suggest you reread the letter. Btw did they do MS specific test or the MRI will confirm is MS is present or not?

[Buckley123 in reply to miccika1]

Thanks for your reply I appreciate it.

Actually I think it’s more his attitude when I see him in clinic he last told me himself a lot is psychological and ie very flippant in our appointments.

You know when you can see someone saying something they have written, maybe I’ve picked him up wrong x

[Buckley123 in reply to miccika1]

Yes I had a mri found lesions diagnosed with ms and then sent to a ms specialist which is my current neurologist and he reckoned not as the lesions in the wrong place of the brain not typical of ms so had all the tests came back negative lumber puncture ect.

So don’t really know now I believe I have Something going on given all my symptoms just can’t seem to pin it down via bloods.

I’ve booked appointment with doc curz at the end of May so if he says not to worry I guess that’s all I can do.x

[miccika1 in reply to Buckley123]

Keep investigating until you know where your symptoms are coming from. If your gut tells you he is dismissive see if you could get another doc. I changed my rheumatologist after 8 years with him after he told me i should see a phycologist 😀. I wondered why he had me on max doses of immunosupressants if it was all in my head....

[Buckley123 in reply to miccika1]

That’s terrible to say this these flippant comments are not nice I’m not suprised I would have got rid of him too

The thing I have a issue with is that no other tests are being done the aps ones only came about because I paid to see someone in lupus center after seeing my neurologist and he suggested more bloods. That suggestion cost me £250 and it was a obvious one you would think for a top neurologist 🤦🏼‍♀️😂

I have a lack of faith in the nhs I believe you know your own body and should never take someone word for it xx

[KayHimm in reply to Buckley123]

But the neurologist is doing a repeat MRI. I don’t know how that works in the UK, but in the US an insurance company would not authorize an expensive test like that is it was not medically necessary. Trying to « prove » it is not psychological would not pass. At this point, they may not feel more blood test will give them the information they need. This neurologist seems to want another MRI to see if there are changes. That is pretty close follow up.

[Buckley123 in reply to KayHimm]

Thanks kayHimm I’m just anxious xx

[KayHimm in reply to Buckley123]

I know. Just trying to reassure you that your doctors seem to be very seriously pursuing a diagnosis. A quick diagnosis is not necessarily the correct one. They are following you closely and will watch symptoms. Hang in there!

[Buckley123 in reply to KayHimm]

Thanks mate appreciate your responses as I feel really alone atm.

I see a ent today who went back to lupus and had organised a scan of my lymph nodes and face cx

[KayHimm in reply to Buckley123]

What did he say? Sounds like the scan could add something to the picture. Oh, poor you. So many tests and do many conflicting views.

[Buckley123 in reply to KayHimm]

Yeah he said I can see you have a butterfly rash I said no it’s just red comes and goes I’ve been tested for lupus and it’s negative he said that doesn’t always mean a lot xx

[KayHimm in reply to Buckley123]

That is good he noted the rash. Take a photo for your appointment. Good to get a second opinion. Tests can turn positive. Has happened to many of us. I know it is horribly frustrating but try to think of it as they are putting the pieces of a puzzle together. You are challenging and complicated. You are doing a great job of advocating for yourself. It may not seem like it but you are a high priority. You are a young woman who lost her mother to a tough illness. Now they are considering autoimmune disease with you too. Most of what they would see in a day is headaches, non-neurological stuff, chronic sinus issues, polyps. I have no doubt you are on their radar. Stay in touch.

[Buckley123 in reply to KayHimm]

This is true thank you I will keep in touch just getting my bloods re done never wanted a positive result before 😂😣🤦🏼‍♀️ how are you feeling today dx

[KayHimm in reply to Buckley123]

Well, you are having a lot of confusing symptoms and you are understandingly terrified of having MS. You would be prefer a more treatable disease. Just had a good cup of coffee and doing well this morning, thanks. Take care. K

[Buckley123 in reply to KayHimm]

I’ve booked a appointment with doc Curze for a second opinion Over all end of May xx

[miccika1]

verywellhealth.com/what-cau...

[Buckley123 in reply to miccika1]

Thanks for the link I’ve read it all and I’m sure I have some sort of gland issue as my face swells too may all be linked.

What ever you do don’t google muscle twitches basically I’m already dead according to doctor google 🤦🏼‍♀️🤦🏼‍♀️😂