Another brain Scan?

[MONIREN]

I've been having second thoughts about having another brain scan. Diagnosed with FND 2018. First one clear plus numerous tests all clear. My symptoms are not as bad as many, just becoming more of a struggle to keep independent. Lately left side of body tingling to hurting, having to adapt as losing use of hands, worse when tired. My crab walking still same, but now more jerking. I did get referred to neurologist again, 6 months ago but no response. I have a sick husband to look after. Just at a loss whether it's worth my meager strength, I'm 66. Has anyone else had another brain scan? My gp is all for it, so I don't have to convince her. I'm regional Australia. Appreciate your input. Moni

[Van604]

Hi. Are you talking CT or MRI?

[MONIREN in reply to Van604]

Last one I had was MRI. I do have other health problems and get confused, but that sounds right.

[Van604 in reply to MONIREN]

Oh, ok. I asked because CT uses radiation, MRI doesn't. Would you have to pay for it yourself? What are you looking for? A neurologist told me they haven't yet invented the scanner that can see FND. Or do you think you could have something else?

[Pault1 in reply to Van604]

en.m.wikipedia.org/wiki/Fun...

[MONIREN in reply to Pault1]

Thank you, I will check that out later, usually first thing in the morning I get as much done as I can. Appreciate your input. Take care. Moni

[Van604 in reply to Pault1]

I meant regular MRI - that's what most of us get. fMRI is very difficult to get and they don't use it to diagnose FND. That's what they told me anyway.

[MONIREN in reply to Pault1]

I didn't realise that there was another MRI, I doubt this hospital has one but I will ask, thank you. Major hospitals on coast might, but I can't travel or leave my husband, he isn't well enough. Appreciate the information. Moni

[MONIREN]

I do know that FND can't be seen, but at the time of diagnosis, neurologist said that diagnosis may change. Just struggling to cope. Have to get into mind set that I don't have a choice. Thank you for your response. Here the cost is mostly covered, not that it's a reason to have it.

[Van604 in reply to MONIREN]

Oh, yes, I see. I would probably do it then, myself, because I'd rather know, one way or another. And if it is something else, maybe there is treatment. I had several scans and nothing ever showed up, but they still diagnosed me with Parkinson's at the beginning. So it's all very confusing.

[MONIREN in reply to Van604]

In some ways I think they just want us to give up, go away. I hope you are coping. Take care. Moni

[Van604 in reply to MONIREN]

I agree. Yes, I'm doing a lot better since I stopped seeing my neuropsych etc! I'm just pacing myself, doing what I can every day and trying to do things I enjoy more. I just retired so that makes it easier. All the best.

[tabey]

Dear MonirenI have had around 6 Mri scans since 2017 they did show up 1 leison which did have a small changed with in the time of the scans some were with out contast and some with they also did a brain and spine mri too which showed some areas of scaring at base of spine and told me i have to get another mri in 2022.

So i would say if you got the strenth go for it

I wish you the very best

Tabe

[MONIREN in reply to tabey]

Thank you. First one, clinic didn't give me results, after 6 months I went somewhere else, my new gp is very thorough. Sounds like you have gone through a lot. Take care. Moni

[Paddoodlz]

I had 4 but mine showed lesions, progressive in getting bigger, deeper....but was still told allnis normal. I gave up getting scans done with being a guinea pig. I am 60 and dealing eith this for going 9 years. It is so frustrating, I understand how you feel. Hugs to you and blessings

[MONIREN in reply to Paddoodlz]

I'm sorry that you had problems, but probably because it's too complex, they refuse to help. Surely, someone should. You must be frustrated. I do hope that you do find answers, or someone caring. Take care. Moni

[cocoferraro]

Hi Sweete so sorry to hear about your dileama,

My brain scam showed, lots of white fosi and deteriation, that of a 70 year old! but I am still here and fighting, it might be good for you to have the second scan, at least you know where you stand.

In your case, if its any help. there are lots of benefits you can bemand and help for looking after your hubbie, nurses etc,

hope this is of help to you,

and my heart goes out to you, let me know how you get on xx

[MONIREN in reply to cocoferraro]

Thank you for your kindness, you have been through a lot yourself. Yes, I will see gp, if nothing shows up, just need to continue coping. I would love to find a place more manageable, but my husband can't cope with letting go of his treasures, you know that item that might be useful in years to come. Our son coming from the coast soon to see if he can help downsize, so at least easier to move. Will update you. Take care. Moni

[MONIREN in reply to cocoferraro]

I'm gutted, saw gp already, here it's easy to get appointment, it was 1 hr from phone call to appointment. First thing she said was, FND is psychological, so getting brain scan useless. She re read reports from neurologist and said he had already done extensive tests. She did give me a referral to another neurologist that travels here from Sydney. She also gave me meds for parkinsons for 7 days to see if symptoms ease. She did say she will help me get help to make it easier. It's one of those, 'get over it' moments, as you and others know too well. I didn't get upset, as I need her in my corner. Now it's a matter of time to see when I see someone who hopefully knows more.

[cocoferraro in reply to MONIREN]

Hello sweetie,Please dont get disheartened,YES FUNCTION NERUROLOGICAL DISSORDER is psycological, but all the symptomsand pains etc ARE REAL, and the doctor knows that, So he/she has to treat them. Because it is psycological does not mean that we are any the less important to the GP etc, so pleased dont feel bad. It is a well recognised illness.

There are a lot of things to make your life easier. for example, the social services will give your home a check and install grab handles etc, but also there are a lot of helpful payments you can receive, it just takes a lot of traulling the internet.

I undestan about your husbands treasures, but the social services can help with that too, and take a lot off your plate, It is time you asked for help, dont try to do it on your own anymore,

If you need more help, please email me, I am thinking of you, and send much luvxxxx

[MONIREN in reply to cocoferraro]

It's like I should be able to control it if it's psychological. I've struggled with back pain 40 yrs and I've learnt to control the pain signals. I struggled with depression for 16 years, lost so much time with my children, I've controlled that. I don't take antidepressants. I'm just tired of fighting. Just need time to find my inner strength once again. I'm a stubborn old woman, thank you for your kindness and offer of help. I will personal message you soon, just need time.

[cocoferraro in reply to MONIREN]

Hi sweetie,Undestand your email.

You have to come to terms with the fact that it is phychological, I know this is so very hard, because you think that you can control it, but you cant. Understand about your back pain,me too with 2 slipped discs for 30 years. but those things are different and pain killers or ops will help, you sound like such a strong woman, and I truly understand, but you must come to terms with FND, then you can relax a little, and please accept any help, there is a lot out there. I am so sorry that you lost so much time with your children over depression, but you cannot fight all your life, you will blow your fuse out! I think, of course that you still have that inner strength, but dont call on it know, let others take the weight, you have to learn to accept it, otherwise you will be running around like a headless chicken and burning yourself out, then you are no good to anyone. Try to slow down and let others take the strain, sorry if it sounds harsh but believe me its the best thing you can do at this stage in your life.

FND is very hard to deal with, but if you get it then you will have an easier ride.

Will be thinking of you,

only message if you want to,

sending love, I know what u r going through, believe me xxxx

[MONIREN in reply to cocoferraro]

Thank you, if it was just FND I would be fine, just dealing with other health problems, daily angina . But there are so many worse off with their symptoms, I should be grateful. I did research and found where I can fill in paperwork to get physical help. Gp said she will help, plus I have here, ones who centre me. I appreciate your kindness. Take care. Moni

[cocoferraro in reply to MONIREN]

I wish you all the luck in the world and have a very happy christmas.

[mermaid-680]

Hi There is evidence to suggest healthy people with no history of FND have ended up with FND as an adverse reaction after any of the covid jabs

The MRNA does attack the central nervous system and causes organic problems but equally it can also cause malfunction of the nervous system in the form of FND

Some people have symptoms that appear to be transverse myelitis or guilt Ian. Barr after vaccination but tests reveal not and they are given a diagnosis of FND

I’ve seen first hand accounts from people who have experienced this

I would be very cautions about having these vaccines

How you prove to your GP that you are at risk of exacerbation of your FND is a tough one because the info on these issues within the nhs and the yellow card system is nit easy to find

Tge yellow card system does have a section for FND as a vaccine reaction but it’s not listed obviously under organic neuro

[MONIREN in reply to mermaid-680]

It's not from vaccine, diagnosed 2018 well before. But thank you for your kindness in responding. Take care. Moni

[mermaid-680 in reply to MONIREN]

No problem just wanted to outline the vaccine risks for FND people

[mermaid-680]

Hi You may be better going for Nerve studies of the limbs and brain because if you can’t get a functional mri the nerve studiesFND be more helpful

Measures the muscles relaxed and when asked to move a certain party of body the results will pick up organic probs in major nerves spine and brain and peripheral nerves too

It can help to confirm FND in some cases because of the waves produced

If those are not normal then go for an mri

😀