Upset myself : I thought all this panicking was... - LUPUS UK


26,733 members22,737 posts

Upset myself


I thought all this panicking was over

Honestly don’t think I will sleep tonight

Just sitting her watching channel 4 lady with msa

Then yep I googled symptoms.. wished I hadn’t explained brain lesions muscle weakness blurry vision shoulder neck pain .. I just need to stop and be real o know the amount of neuro I’ve seen they would know right ? Couldn’t eat my dinner over it.

This is why I want a diagnosis so bad my anxiety is higher today I had my brain scan .. went well had music my mums song came on and I cried through my mri..

I’m not getting on with my partner or his family atm I feel so alone and I worry if I get trapped inside my own body.. then what like I have to make a decision now what I would do .. anyway this is a deep post I’m sure some of you are eye rolling but I don’t have anyone to tell no one is interested xx

79 Replies

Have u ever considered fibromyalgia

Yes I have but it doesn’t account for brain lesions I have and optic nerve issues xx

But maybe it’s a tied in with lots of different things xx

I had spots on my brain. I twitch...i jerk especially at night falling asleep. At rest sometimes leg jerks or thumb...burning skin...shooting muscle pain..burning mouth syndrome. Blurry vision..stiffness..pins and needles...haf mri brain and spine and lumbar puncture. 2 emg and 2 nerve conduction test. Extensive blood work to rule out lymes, cushing, lupus, neoplastic cancer....the 3rd neurologist said the only test we haven't done is a nerve biopsy. Which is skin biopsy. Results came in and I have small fiber neuropathy and its idiopathic. All I can say is I never had no symptom under the sun til I got thyroid removed and something in my body didnt like it...thrre are some things science hasnt discovered yet but found correlation s and common disorders associated to another....i studied and researched....true fibromyalgia is strongly connected to thyroid issues and in at least 50% of fibromyoalgia cases have small fiber neuropathy. When that doctor told me my symptoms are so because my skin biopsy showed I had loss of small fibers....only way to get diagnosis is skin biopsy. I told that doctor I believe I really have fibromyalgia cause i told him how I found how small fiber neuropathy is found in patients with fibromyalgia. He said its sounds like ur on the right track but for now we are just gonna say small fiber neuropathy. Twitches and jerking are not associated with small fiber neuropathy but fibromyalgia. My friend had a friend that she said she could see her jerk and she went all the way to the mayo clinic and that diagnosed her with fibromyalgia the real true fibromyalgia. I take cymbalta 60mg...the med is mostly given for anxiety but also given for fibromyalgia and neuropathy. It takes away 90% symptoms ...i still twitch I still jerk ....but this is tolerable and liveable. Look up " MS mimics" you will find fibromyalgia and fibromyalgia has even been found on brain scans. I know u need help. I'm not saying this is your issue...u clearly still need answers. I wanted to share with u. I was suicidal the symptoms soo bad...but I finally got help and its a humbling lesson

Thanks so much for your reply and taking time to explain this all to me!

You know what it is I just can’t see the wood through the trees atm (I think that’s the saying I’ve never had to write it down before 😂)

I see my mum pass from end stage ms and then that’s all I see is the really awful your going to die side if neurological locked in your own body and no one can help you two months after see died my body started similar to hers and I’ve never really got over it I just have this feeling that they are wrong and I’m really going to be trapped and I don’t want to be like my mum I’ve had enough of it already !

Liston to me I’m going on again it’s just so scary xxx

Oh I have shotty lymph nodes too! In my groin especially they are enlarged and im totally normal had ultrasound for that and 3 doctors check it out and obgyn, general surgeon and endocrinologist

MEGS53 in reply to BethanyOxe

Me too, but mine are in my armpit.

Those pictures below I have 90% of them....wasin total fear and was told i do not have MS by 3 doctors. If this scan is normal go back to drawing board it very well may not be MS.

Above nor below

Im sleepy sorry....90% of symptoms

Hey thanks for your info I do have lesions already aware from previous scans I just hope I have no more as I have many my eye has played up twice since so who knows but your right I have most of the symptoms of fibromyalgia too xx

MEGS53 in reply to Buckley123

Hi Jade. I've just seen your post. I hope you got some sleep last night. I don't have any answers - for myself or you! - but BethanyOxe is making a lot of sense. Her story is very similar to my own, I also have many brain spots and at one time I did think I might have MS - but I'm sure now I don't have it. I've also been dx's with fibromyalgia and I accept this does relate to many (but not all, of my health issues) and Pregabalin is at least helping to ease some of the symptoms. I can feel your loneliness, so please keep talking to us, if your family are not helping. Take care, xxx

MEGS53 in reply to BethanyOxe

Hi. Sounds very, very similar to my symptoms (+ others unfortunately). I've been dx'd with fibro, but to my reasoning fibro is a symptom in many disorders (including AI) and that's the way I think of it. I've recently been prescribed Pregabalin and it is helping. Please see my reply to Buckley.

PS I don't want to upset an fibro sufferers with my personal opinion.

We are here to listen.we all need someone just to listen to our worries even if they aren't able to physically help with it being so hot and not sleeping properly thats when I think we can lie awake overthinking things too.try to keep things in perspective send you a hug but you dont want a swestu clammy one so I'll blow you kisses instead...get ready to catch 😘😘😘😘😘

Thanks I needed that I just feel so lost I don’t know what’s wrong with me and days like today it all seems to real and everything I thought I fit into I don’t seem to like I’ve always said I believe I have lupus like my first neurologist said my mum had ms passed away now two years and I still don’t know I’m not as ill as some but if I just knew things like this wouldn’t knock me off my feet so much. The fact of the matter is I’m really scared my brain has deteriorated since my last scan and if it has then what xx

It's all very frightening and weve all been took 5yrs to get my lupus diagnosis and in that time I was seriously ill and in heart failure for a year.cross one bridge at a time and deal with one thing at a time then you will process it properly .try not to worry about things that might not happen or you cant change. That only causes stress which in turn fuels your illness. There is alot more help nowadays and medical science is changing all the most probably seems more frightening if you aren't getting support from others close on my own with a teenager so understanding is in short supply but we are strong cookies xxx

P.s it's only those who dont understand chronic illness that roll their eyes ! Xx

Pps theres no mould for lupus it affects everyone of us differently xx

Thanks so much for your kind words it really helps.. I know I’ve had two brain scans so far no change my third was today so I’ve seen a few neuros they are not that concerned

I just have this sickness in the bottom of my stomach that won’t budge my mum had ms and when she passed it was horrendous and it’s my biggest fear now a reality although they assure me it isn’t ms but can’t tell me what it actually is! Sorry to hear about your heart failure how are you now?

I know everyone on this group is so kind to me I just feel like I’m irritating people I irritate myself 🙄😂

I also have three children one who is 12 and thinks she knows everything xx

I'm stable now thanks.before my diagnosis the lupus had run riot and inflamed my heart ,damaged my kidneys and my partner died in a rta in 09 so if anything happened to me my son would be an orphan so there are unthinkable connotations for all of us..his half sister would have to go through the courts as she wouldn't get automatic custody. Anyway now hes 17 only comes out of his room for food and ive learnt to distinguish what the different tone of grunt means !

The loss of your mum is still raw and I understand that's also causing you to be sensitive. In order to live and cope with chronic illness we have to put our trust in our hcps who (despite recent posts ) are trying their best to help. When do you get your results ? X

Thanks sorry to hear about your partner that’s awful life so scary as you get older I remember my mum being 30 I must have been 13 thinking she really had her shit together how old she was and how she knew everything it’s only now I’m 30 I realise she was winging it 😂😌

I don’t trust the doctors I’m terrible I’ve had bad press all my life about doctors prob some true some false from my mum she had a lot of issues with drink an many other things so my view probably isn’t fair.

I’m not sure atm with Covid my appointment isn’t until 30th December but I reckon they may call before this and definitely if something is wrong xx

Thanks its 11 yrs next month but weve dealt with it and moved on.ive had some incompetent drs they told me nothing was wrong it was in my head yet I was in hospital with repeated bouts of pneumonia and on one occasion had right base lung collapse 🤷‍♀️ when they offered me a outpatients appointment I told them not to bother.i now have a chest specialist, kidney specialist, rheumatologist and gp who I get along with very well.despite our bad experiences we cant treat them all the same if we do ultimately its us who suffer in the long term .

I'm sure they will be in touch before December but if it continues to prey on your mind request a telephone call.

If the truth be known we all wing it through life 🤔

I've been there with a 12 yr old daughter is 28 next month a mum of 2 and a nurse so dont give up hope they do improve 😏

I know it too warm but try to sleep...get over tired and you ll feel worse which will make you overthink some more.ive got eyeball ache we were awake till gone 3am last night curtesy of the most spectacular thunderstorm .....must of been a spectacular.... we made the news ☺


Thanks so much I feel so much better now ! Glad to hear girls come through it mine is a little nightmare atm !

Yes I do see the best as they cal them also in London charring cross the royal free and I’ve been to guys also all paid for but they should know what they are talking about 🧐😂❤️ I hope anyway !

I hope your 👁 ball feels better soon I get migraines across the eye nothing more irritating! Xxx

Sounds to me like your attending some of the best hospitals 👍

Goodnight and god bless xx

Night xxxx

Just wanted to say Spanielmadlady how very sorry I am for the loss of your partner - must have been truly awful for you. And on teenage boys - I’ve had 3 of them- all now grown up and left home but remember my eldest son grunted for about a year - looking back makes me smile 😃 but very frustrating at the time - have a good day xx

Thank you SV.he was 46 at the time.i have one of each my son was 6 when his dad died and then I became Ill.hes been through alot but hes a good kid never give me any trouble did very well at school and is now at college.hes a fantastic artist he drew the dogs in ink for my 50th but due to lockdown I've not been able to get it framed yet.people have often asked me how I coped but I just did.i had to.i guess its put me in good stead for coping with my illness and now i just get on with eldest dog ...millie got me through so much when brian died as i coped by walking now both of them help me cope with my illness as I'm sure your 2 do too.they give us so much support and only ask for tea and a tummy tickle 😁.

Give them a tummy tickle,tail scratch,chin scratch,armpit tickle or a behind the ear scratch (which ever is their favourite) from me. Xxxxx

It’s absolutely dreadful that your children lost their dad so young and you your partner - he’s greatly missed . You must be a very proud mum - how lovely that your son drew a pic of your dogs - you must post a picture of it when you’ve had it framed - I would love to see it .

Mira is in my bad books - I was just getting dressed and came out looking for Bea and Mira and caught her red handed actually sat in a pot digging the plant and all the earth out - she now has a brown beard - I should of taken a picture actually - the little devil 👿 xx

Arnt they funny ...we just seem to know when they are up to no good.i got a pic of marley yesterday with his head in the busy lizzies...I did tell him they dont make a very good pillow but he still laid there. 🤷‍♀️

We are going out now before it gets too hot so I will post a pic later as I dont know when I will be able to get it framed.i want to take it and get it done properly xx

Oh I would love to see it - have a good walk xx

It took me seeing 3 neurologist...i went to a doctor 2 hours from my house one of the most prestigious in NC and or USA...Duke University....all 3 neuro said I didn't have MS but the test was normal but I was not. The second neurologist says he's seen patients like me all the time all test are normal and they jusy treat the symptoms....what a bunch of crock. No I'm suffering im telling the doctor im devastated if I could take my body and morph it into ur body u would know these sensations are life altering I sunk into deep depression. The 3rd neurologist said I did the right thing by not just settling for that response and he said we are gonna get you some answers...and he too was a MS specialist

I meant me some answers

Hi sweetie 🙏🌿🌸🦋

Sooooo sorry about your anxiety and lack of diagnosis.

Negative stress ALWAYS makes the chronically ill much worse.

I have suffered decades of it and being 69 now the one thing I’ve learned is that we can only deal with was happens each day.

I have 61 diagnoses and 3 pending.

Many of my conditions have overlapping symptoms.

It’s easy to Google things we suffer from but because so many of them will have the same/similar symptoms it’s best not to convince yourself that you have whatever you Google.

The GP needs as much info as you can supply about your experiences with your symptoms.

I started keeping a home chart. I journaled every symptom being sure to note date time activities and details about the suffering at that time. Example:

If you have a home blood pressure kit that would help. Pulse oximeter to measure oxygen levels would be helpful if your symptoms involve these areas of illness.

Note your weight daily and all fluctuations and suspected causes ( salty foods/fluid retention/ edema If possible).

Every test and consult hospital visit/stay copy of these things should be in your chart too.

Make a detailed list of all your medicines how you tolerate them and all allergies/intolerance to any medicines.

Be sure to list the OTC (over the counter) medicines /supplements you take in the same way.

Take your home chart with you to your appointments. You can discuss your case with your doctor/nurse from your detailed notes. This data should be very useful in helping your doctors make a diagnosis

My best advice is to try and occupy your mind with other things that are calming for you.

Just take things one day at a time...don’t let your thoughts go beyond what you can handle for today.

I’m sooo glad you spoke out about your suffering sweetie. We are in the same boat; we have a lot of other people in our boat so you’re/we’re not alone.

I care about you/everyone on the forum/around the world.

I pray daily for you/everyone.

I’m losing my eyesight in my good eye, my texting hand needs reconstruction joint surgery and I’ve re injured my spine again so I’ve not posted much since March.

Please know that you can PM me anytime...I do care sweetie

I will reply as soon as I can my friend.

Please take care and be safe.

Sending you gentle hugs 🤗 much 💗 and prayers.

EvaJo xxx🥰

PS. Sincere sympathies about your mum





Buckley123 in reply to honeybug

Thanks so much honeybug sorry to hear you haven’t been well ! That’s a lot of overlap !

Yes google is not my friend.

I’ve kept pictures but of different things but il be glad to get the updated brain scan and hope for no change x

honeybug in reply to Buckley123

You’re welcome sweetie. Praying for good results from your scan.

Abundant blessings my friend.

EJ 🙏🕊🌿🌸🦋🤗♥️😘

I hope you do get some sleep. Xo

Buckley123 in reply to Roarah

I did Eventually how are you xxx

Roarah in reply to Buckley123

We just got power back 9 days after a tropical storm hit my state so other than the high temps in my house at night( 35c ) I have been well. The ac is back on today so sleep will hopefully go well tonight. Hang in there you will get answers and there is always hope no matter how bad those answers maybe. Xo

Buckley123 in reply to Roarah

Oh god and thought I was dying 🙄😌 bet your doing better then me tonight I have a fan currently blowing hot air around my bedroom xx

Roarah in reply to Buckley123

We usually have temps higher than 90 ( 32c) in summer so we have a pool and ac. But a week of mid 90s really built up. Good luck tonight.

Buckley123 in reply to Roarah

Yeah here be lucky to see 24 it’s been 34-35 🥵 xx

Roarah in reply to Buckley123

Inside my house hit 37c

KayHimm in reply to Roarah

Did you lose power, Roarah? 😘

Roarah in reply to KayHimm

We were out from Tuesday last week until last night. Many are on well near me. With the heat wave at least I could take cold showers. Con ed did much better than eversource. We still have thousands in ct without power over 10 days after the storm.

KayHimm in reply to Roarah

How awful! My friend also just got power in Westchester. It was Mississippi Power who fixed the lines. 😅

Glad you could shower at least. I sent a battery operated fan to my friend.

Roarah in reply to KayHimm

Canada fixed us. It was hard to get outside help since our states are doing so well with covid positivity rates we both only allow entry of others from states with under 10 percent, I think that leaves only a handful of states. Xo

Hi Buckley123,

No rolling eyes just hugs!

You’re not alone because you have all of us on here and we care about you. I’m sorry to hear about your mom, that had to have been tough for you and your family. My mother had MS and passed away too about ten years ago and understand the anxiety that comes with potentially having ms.

I am currently in the process of figuring out if I have lupus and was encouraged to bring all my results and Sit and down and talk to the rheumatologist and see what she says and then ask why she wouldn’t consider a diagnosis of lupus if she said that she didn’t think it was.

Do you or have you felt comfortable asking Them what their reasoning behind saying no was? If not I just also want to encourage you to talk to them, it sounds like they have performed a brain scan, are you able to get the results?

Buckley123 in reply to JennaShi

P you it’s not I nice thing to watch is it ? I see a lot of people living normal lives with ms I just can’t understand why she went the way she did so young also x

I’ve asked manny questions and got so many different answers I was told by dr Cruz I had uctd and myosotis but all bloods came back negative he discharged me from rheumatology back to my neuro who thinks I have uctd

I had another neuro who told me I had lupus and then changed his mind to sarcoidosis. I have lots of lesions on the brain two bouts of optic neuritis I was so scared of ms but now I just don’t care I just want to know but maybe il never know. I’m so so tired from it all ! Xx

JennaShi in reply to Buckley123

No, it’s definitely not easy to watch. Hard to understand as a child and must’ve been very difficult to be a young person and mom and go through it. I know there are different types of MS and think that is one reason why some people are better off than others. I can’t remember now which type my mom had but I can tell you she got diagnosed in college, after my uncle (not blood related) and he is still alive. That is unfortunate that she passed away so young and I’m sorry.

It’s sounds like there are different thoughts coming from different doctors. I agree that it’s good to know and get a more definitive diagnosis so that you can get better treatment.

I’ve learned myself that labs can wax and wain, especially with autoimmune diseases. There are more tests that can be done if you haven’t already had them but can be more invasive such as a muscle biopsy for myositis and there is a biopsy for sarcoidosis as well. I’m not sure what the protocol is for the UK. But if they settle on something such as one of these or even MS, I would think, if you’re open to it, that something like a biopsy would be worthwhile to rule it out?

I wonder if the lesions are part of any of these things they have tried to diagnose you with or a separate issue.

Have you had a spinal tap, I believe it’s called? Where they check the spinal fluid? And mri of your spine to look for lesions?

Might help take the guess work out and get you some some more definitive answers.

It seems that there different causes and different places that they can appear.

I hope that these articles don’t worry you more, my hope is that they may be of some help to further research/ narrowing down what may be the cause.

Buckley123 in reply to JennaShi

Yes this is true my mum had relapsing remitting Ms which turned progressive after she had my little brother he’s now 9 x

I’m sorry to hear about your mum it really can be a awful disease I find it hard to separate it I just see bad even though I’ve seen good.

I’ve had a look I’m trying not to read to much mine are all frontal lobe I think that’s why it’s not ms or something

I’ve had no places for biopsy yet il just have to see how my mri comes back x

How are you anyway xx

Oh I had a lumber puncture it was negative I’ve been checked for a lot of neurological things like mog antibodies devics disease ect all negative the only blood work had positive is ace levels but apparently it’s not sarcoidosis x

JennaShi in reply to Buckley123

That was probably tough for all you at that time. Life can be unfair but I’m sure she had alot of love in her heart for you all. I feel that way too sometimes and can get overwhelmed and sad easily. But what are some of the good things that you remember about your mom? I try to think of how kind my mom was. Even though she was in alot of pain which was really hard to see, she was naturally kind and optimistic and I loved spending time with her even if it was just laying with her on the couch. I remember when she saw my daughter for the first time, we have one picture, she was grinning from ear to ear. Melts my heart thinking about it💜.

That’s a good start and agree that it can get overwhelming thinking about this alot. It’s good that they’ve ordered these tests, I’m hoping that you will have a more accurate picture to what’s going on soon and rule out what isn’t.

okay we will wait for news if you feel comfortable sharing about your mri. Hugs, to you, have a good night.

Firstly no one will be eye rolling and secondly I am so very sorry for the loss of your mum - must be so very hard to deal with - my mum is in her 70,s and can’t bare the thought of anything happening to her. Can’t really be of any help to you - life is so very hard sometimes and sounds like your are going through a very tough time, I hope things get better for you soon- sending hugs 🤗

Buckley123 in reply to svfarmer

Thanks so much ❤️❤️❤️

Hi Buckley, I have no words of wisdom for you but I just wanted to reach out and give you a Cwtch (Welsh hug). You are doing what I do all the time, apologising first being ill, for being a nuisance, for taking up people’s time. It is a sign of being worn down by illness and scared of the future. No one here will ever roll their eyes. No one here will ever judge you. You are sick and feeling alone and anxious. I saw that lady too on 24 hours in A&E and myself and my husband cried for her and for her husband. I was once told by Doctors that I had low grade Lymphoma and given four years to live. I was 49 and terrified but they were wrong and nine years on I am still here. I hope that the wonderful people here can give you some good advice. Be kind to yourself xx

That’s awful ! How are you know ?

I get so worried you know it’s my worst nightmare I should think it’s everybody’s they just don’t think of it but when you have neurological issues like brain lesions and symptoms and seen my mum pass from ms day in day out it becomes a reality well it feels like it is anyway.

Poor lady she reminded me off mum all clearing her throat I had to do that for mum is horrendous bless her heart 💔

Her husband too for looking after her devastating I know how devastating it is to watch and helpless stays with you forever !

Thanks for your kind reply xxx

I am ok ish. I was fortunate to have a GP who believed me when I told her I did not believe I had Lymphoma and referred me to St Thomas’s Lupus Unit. They put me back on the medication and I was discharged from Oncology and Haematology two months later. I totally understand your fears bless you. I nursed my Mam with bowel cancer so I can totally empathise. Please know that Doctors do not always get it right and particularly with autoimmune conditions you can get a different diagnosis each time you see a different doctor. If you have one that you have confidence in tell them your concerns. Write them down so that you do not forget. I have seen three Rheumatologists in the past year. The first one I had for five years . He said I probably had Lupus, probably had Bechets and definitely had Raynauds, and APS and Fibromyalgia. The second one upped my medication which caused macular oedema so I had to come off them. He then said there was nothing wrong with me except Fibro and “ hysteria”. The next one said I had mild UCTD and should think positive and get on with my life. I had a telephone consultation with yet another Rheumatologist last month and at last I think someone is listening to me. You need to find someone who helps answer your concerns too. Don’t give up there are amazing doctors out there who will do everything they can to help you xx

I feel your frustration. My symptoms started with buzzing in my feet which quickly travelled up my whole body.

2 years on I have muscle twitching and cramping and burning pain.

Spinal mri negative. 3 nerve and muscle tests are negative. I tremble all over a lot of the time.

Neuro has discharged me putting my symptoms down to anxiety which they aren't.

I dont know where to go from here. Just want a diagnosis x

I know it makes you think if it’s not that then what is it and the worst things come up google is not my friend

I haven’t really got any advice but to find another neurologist my muscles twitches all over some days worse then others

But my neuro said it’s not damage it’s inflammation causing it to miss fire the same inflammation that isn’t in my blood work 🧐😂🤷‍♀️

Have you checked Addison’s it can have effect I think on tremors and adrenaline? Also thyroid Xx

Thanks lovely. Have had my thyroid checked and that's ok. Think I'm going mad even went to a psychic healer who said my nerves are hyperexcitable which does actually fit all of my symptoms believe it or not. How do I explain that to any neuro. Constant burning pain tonight in my thighs and abdomen. So frustrating. Hope you manage to get some answers soon x

I’ve been told mine are also look into macs pots or Addison’s I’m sure it has to do with it all xx

Oh, Jade, you have so much to cope with. You have had these scary symptoms and the abnormal MRI for a long time now with different opinions about the cause. Watching your mother struggle with multiple sclerosis makes this all so much harder.

Is it MS or MSA that you are worried about? Not having a diagnosis certainly leads to trying hard to figure things out on one’s own. It is important to remember that brain lesion is a very general term. It just means an abnormality on the imaging. Your doctors can’t be sure whether yours is Sarcoidosis or connective tissue disease, right? I thought they ruled out MS.

You might want to ask your doctors if they are sure you don’t have MS and why they are confident. They will explain to you the specifics, how the lesions may be different and the significance of the optic neuritis.

Hope your MRI results are good.


Buckley123 in reply to KayHimm

Thanks kayhimm I know I’m like a stick record !

Im not even scared of ms I’m scared that they are wrong and I will be trapped like my mum was like msa or als or anything neurological tbh scares the crap out of me !! When I was a child I had nightmares about not being able to move it’s never left me and since the brain lesions it’s just added fuel to the fire and now they don’t even know !

Yes they have ruled out ms as far as I can tell the lesions are in the wrong area of the brain and I know I’m not progressing two years later to what I would think for msa or als

But I feel so much about it I just can’t explain it when I was first diagnosed with ms before I found a ms specialist I decided I would go to a clinic and end it to take sure I didn’t end up like my mum I didn’t want my children to watch me my partner was in agreement if I was to get bad before I didn’t have the capacity he would let me go.

Now I know that’s awful but now I don’t know if I could do that but the thought of being trapped.. do you know what I feel silly now writing this out I really do I see my mum up close and personal 3 times a day her suffering really haunts me

I think I need to see someone

Let’s hope I’m wrong I’m not even progressing I just don’t feel very well I miss my mum and my home life is awful right now I just feel so lost xx

KayHimm in reply to Buckley123

Anyone would need help in dealing with these issues, Jade. You are still grieving the loss of your mother as you grapple with your own unclear illness.

Hope you don’t hesitate to reach out for help.


Buckley123 in reply to KayHimm

Lots love to you kayhimm xx

Hi Jade 🤗

I just wanted to let u know about's 24/7 help from a team of crisis volunteers. U can check out their site at

It's a text only service that can help if worried/anxious/stressed..the text number is 85258.

I can't really offer much advice on neurological stuff..but I do wanna send u gentle cyber 🤗🤗🤗 💜🌈😽😽xx

Omg, I'm trying desperately not to google msa!

Buckley123 in reply to saltrock

Don’t do it it’s that rare it’s not worth it take it from me it’s not nice and not likely so save your self the worry xx

saltrock in reply to Buckley123

I haven't.x

I think people divide into two broad types with lots in between or more extreme. There seem to bethose who shrug symptoms off and aren’t overly suggestible - but who then suddenly panic that they’ve been too complacent and then get fixated with their one symptom or sign. My husband is like this and adult children are too. I envy them their ability not to think about their health unless they really have to. They are pragmatists and think that if they ignore symptoms hard enough they will go away and so far they have been proved right.

And then there are types like me who google everything and pre-empt the worst. But once diagnosed they often doubt the diagnosis or doubt the doctors who dismiss these suggestions. I’m always a doubter and always will be!

However like most of us I seem to oscillate between both types but definitely more in the latter category - innately suspicious of doctors and of myself too. I’m horribly suggestible. I wish I wasn’t and wish I was more like my husband who is in the opposite camp and avoids depressing health stories and won’t read up about anything I have been diagnosed with. Same with all my family apart from my late dad.

I think having an overactive imagination and being very suggestible and a worrier is always made worse if we have seen someone we love being misdiagnosed or been misdiagnosed repeatedly ourselves.

So what I do now is say to myself over and over that I’ve got to a certain age and stage and what matters is quality of life in the here and now. This doesn’t stop me worrying of course but I’m less bothered by what others think of me if I ask a doctor something that may seem stupid and hypochondriac to them or to others. I put my hands up to some hypochondria when it’s made clear! Equally I avoid watching anything that might trigger my over active imagination into flights of fancy.

Nothing is ever excluded for me as a possibility but nor do I worry so much As I did that I may have a neuro nasty responsible for my neuro symptoms. I think this helps me draw a line better for myself. We are living in an era where the mind could go ballistic if you’re hypersensitive like us.

But equally Buckley never apologise For vocalising your all too human fears or think you can or should vanquish them. I once met a woman with scleroderma - and kept looking at her thinking “well obviously I don’t have that!”- she was emaciated physically and made all those with other rheumatic diseases around her seem positively fortunate. But not long afterwards I realised that my fear of becoming her was because I knew in my heart of hearts that I had scleroderma - just not her form and not as badly. Turns out, only recently diagnosed, that I was right - although many doctors excluded it quite vehemently.

But hey I’m diagnosed now and really it’s not so bad. That woman I met in 2014 had it badly but she was diagnosed early when there weren’t any treatments. I know young people with it now and realise that my type is mild and I’ve had the great fortune not to know about it or have it personally rule my life.

I’ve had my kids. They’ve come out of adolescence now and are all great people. I’m not dying of it so far and my tremors and neuro symptoms are now easier for me to explain to myself as secondary to this disease and severe arthritis of the spine. I deliberately didn’t watch a film made years ago about a woman with Systemic Sclerosis so that I don’t sink into gloom and paranoia.

At some stage soon you too will reach a diagnosis and a point of acceptance I hope. Meanwhile keep posting here where we all really “get it” xx

KayHimm in reply to 282523

Love your description of the two types of people. So true! And we have to accept that in ourselves and in others.

You are one courageous woman.


282523 in reply to KayHimm

Thanks 😍 but you know, I think we are all courageous here. And let’s face it, being undiagnosed or feeling incorrectly diagnosed, requires the courage of the fiercest lioness! Posting here, expressing ones anxiety as Buckley has done, is an act of courage in itself. X

KayHimm in reply to 282523

Again, you are so right. Not knowing what is wrong is the absolute worst position to be in. I remember it well, and it has been many years since I went through the diagnostic process.

No question Jade has had a mountain to climb - but with no oxygen. These neurological illnesses are some of the most complex and diagnostically challenging.

I do feel it is important for Jade to feel safe expressing her concerns to her doctors as well. I have found this immensely reassuring over the years when I fear the worst.


282523 in reply to KayHimm

Thanks. Yes I’m coming from a place just now where I have 2 friends - one who is very sick in hospital but entirely believed and awaiting an op for a pacemaker right now with other complex comorbidities. She’s posting on her FB about everything with great certainty and courage born of this certainty, at least in part.

The other is also terribly ill in a neurology ward - with a diagnosed seropositve rheumatic autoimmune disease (or two). But everything neuro has been attributed to trauma. She and another friend in same situation don’t post about their struggles on fb at all. Maybe they think they won’t be believed by friends and family or maybe their neurological symptoms are too severe?

She’s only in that hospital room now being investigated because she was advised to go in her wheelchair to her local A& E and refuse to budge until her existing care plan is being followed - by a far away rheumatologist -who believes she has a rare CNS presentation of Sjogrens disease.

Both women are totally disabled by their serious illnesses but one trusts her doctors and nurses because her conditions are black and white and relatively common vascular ones. The other is phoning me, stuttering with neuro symptoms but absolutely adamant now that after years of this hell that she’s at the helm and won’t be told by neurologists that this is all down to trauma, as she’s been told for years, without thorough investigations and with a care plan that so far no one has followed.

I feel they are both equally ill. But my heart and energy and empathy are definitely more with the friend with severe neurological symptoms and no answers or certainty as yet. X

KayHimm in reply to 282523

I actually understand a little about what your friends’ experiences. My mother had serious heart disease. It has its own horrors, but they always figured out what was going on with her pretty fast.

Your friend with the CNS Sjogren’s must be demoralized. I feel lucky that my rheumatologist - even before the abnormal brain MRI - told me I did, in fact, have low level CNS involvement. Sometimes it comes down to judgement and knowing the patient, right? The neurologist he sent me to learned autoimmune neurology from an expert. I feel so fortunate to have him. Without good studies, they have to use different strategies and think outside the box.

Where is your friend located? Jade found a neurologist in London who specializes in neuro inflammatory disease.


282523 in reply to KayHimm

One of the CNS/ neuro friends is in Salisbury I think (she’s gone completely quiet so I’m quite worried for her). The other is in Edinburgh and I’m very worried for her. Neither have had any luck at all with neurologists. The Edinburgh friend has a great rheumatologist but under a different NHS health area to where she lives. Her compliments and ferritin are very low apparently but as she’s so neurologically disabled That now she was told she must find a rheumatologist in her area who is okay to be led by neurology in finding out what’s wrong and managing her care.

Krazykat26 in reply to 282523

I agree with Kay...very well put 28 🤗🤗

I'm also with u on the learning to live in the now..feelings from the past or worrying about the future just drains our energy n can make things even's a viscious circle!


282523 in reply to Krazykat26

Yeah too true about vicious circles. But we have to break the circle somehow sometime and that takes being pretty determined/ steely - if not a little vicious sometimes - for ourselves And towards others who give us 💩! X

Heartbreaking to her about your friends. The neurological effects of autoimmune disease can be devastating. They are known to majorly affect quality of life. The problem is the understanding of the nature of the problems is still lacking, though researchers learn more all the time.

The U.S. has begun fellowship programs in autoimmune neurology, and there seems to be more neurologists in the UK focusing attention on the area. So there is hope.


You may also like...