I am a complete mystery to my team of doctors, consultants and profs at St Thomas’ hospital in London.
I presented with sudden onset double vision, blurred vision headaches tender scalp and pain in the temple area and behind the eyes particularly the left eye where the sight was severely compromised. After being told to wait over 3 1/2 months for the symptoms to get better and being told it was all down to my diabetes, I went back to the eye clinic in my local hospital and kept insisting over and over again that something was wrong. Eventually after waiting those three months I managed to persuade the consultants to give me an MRI. I went back for the MRI results and was told everything was fine but that he would refer Me too a neurologist as he had done as much as he could. I argued with him and said that my sight was almost gone from the left And that the pain was so severe in the head and behind the eye that I was not going to work and could not get out of bed from fatigue. He eventually looked at my eye and then went to get other consultants. Fortunately that day there was a consultant from Saint Thomas’ hospital who looked at my eye and said that I should be sent to the hospital in London as an emergency referral. That night I was put on intravenous steroid treatments for three days followed by tablets and was in hospital for five weeks where I had every kind of scan and test imaginable.
It transpired that I have a tumour, where the optic nerve meets the brain behind the left eye it is called Orbital Apex syndrome. However the rest of my symptoms point towards PMR and GCA
If I had been treated properly, I may not have lost the majority of my sight in my left eye. However fortunately due to the prompt treatments at the hospital in London with the steroids the remaining eye sight has been saved for now (I have permanent optic nerve damage resulting in central blind spot) and the other eye has not been affected. Since I have been at home and on low dose of steroids, I have recently started feeling my jaw becoming very sore upon eating. And generalized soreness of muscles but particularly in my lower back and hip area. I feel so so tired. I can’t sleep I feel anxious depressed the fatigue is taking over my life. I am starting antidepressants, sleeping tablets and diazepam for when I need it.
I have not been to work for over two months and am signed off for further five weeks at least. This in itself worries me intensely as my life is in a state of limbo.
I am too tired some days To even get out of bed and find walking about even just in my home a real effort. I feel as if my memory has been affected and I am gaining weight from the steroids and losing hair from all the MRIs and CT scans that I have been taking. This is making me depressed as well. On top of all of this I am now not able to drive due to my sight issues. This has taken away lots of my independence away for me.
Then there is the tumour. It is placed in a position that is considered too dangerous to get a biopsy from. And so because of this the medical team cannot fully diagnose whether this tumor is benign or malignant or indeed what kind of tumor it is.
Every test I have had has come back including inconclusive and has left the medics baffled. I have been tested for floating cancers as well.
So now I am being treated as if I have GCA
The steroid treatment appears to have made it shrunk marginally. I am due to have another set of MRIs on Monday and then will go back to the hospital to discuss the results and go from there in the meantime I am left in this state of fatigue and worry and pain.
Does anyone else have any similar symptoms or a story close to mine or can offer me any advice or help or guidance?
FORGOT TO MENTION:
Oh god the hot sweats!! It’s like menopausal hot flushes except I’ve had menopause! The wave of almost prickly heat starts as a feeling like my skin is in fire and heart starts racing.. my skin becomes clammy and then I break out into a pool of sweat (Sorry sounds horrible) this can last for a few moments to ten minutes and happens a lot during the day and night !
This only seems to happen to my upper body, neck and head... it literally can leave my hair at the nape wet!
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farzana100
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I am so very sorry to read about your struggles & the issues you are going through. It must be a very difficult time for you.
As l have not had GCA l am unable to offer any personal comments on your current situation but l’m sure as the Forum wakes up to a new day, you will find more support.
Thank you for your reply and kind words. I really hope that I’m able to get some advice or if indeed anyone else has experienced the same as me in terms of an eye tumor with GCA and PMR
What a nightmare for you. It must be awful knowing something is wrong but docs are going round in circles for whatever reason. I hope there is someone here who has had a similar experience but it is likely that if they did it would have been an alternative diagnosis to an original GCA. What dose of Pred are you on? The high doses used for GCA can make you feel wiped out and at the same time feeling pumped and anxious. It is not great when you are already worried for very good reason, but it is worth trying to keep it in your mind that some of this is drug fuelled. Insomnia is also a big problem at high dose so again it fuels the anxiety from a fatigued mind. Many on here find Amytriptyline effective. For some reason docs don’t seem to prepare anyone for this horribleness so when it comes it is a shock.
It is unlikely that the hair is from the scans but from the Pred and systemic illness. It will come back, a lot of us get that. The weight gain is controllable. The standard approach you’ll find on this forum is going on a very low carb diet, so cutting out all sugar, pasta, potato, rice, maize, anything made of flour and while on high doses, very little root veg. I did this from the start and gained no weight and it stopped the crazy blood sugar swings due to the Pred, not least because it makes you want to eat the world. At a time when I felt completely out of control, it gave me a bit of control and I could eat when I wanted as long as it was veg, protein and some fruit. I did have an unripe banana a day to boost my potassium because Pred makes you lose it and that can make your muscles feel weak. Magnesium is also essential for the same reason. Do check with your docs it’s ok.
Do cut out salt because Pred makes you retain sodium and therefore increases fluid retention. My eyes used to get very puffy if I took even a little. None of this helps the sight but it helps your body cope in a time when you feel like you’re falling apart.
Do ask any questions as you go along no matter how silly they seem.
How did they see the tumour in the end? Is it possible that the ‘tumour’ is some weird inflammatory response to the GCA? I hope it keeps responding to the Pred so you can at least see something happening.
I am sorry to read your post and what a position to be in.
Were you referred to Moorfields Eye Hospital NHS Foundation Trust which is the leading provider of eye health services in the UK and a world-class centre of excellence for ophthalmic research and education? .
This is a totally inappropriate comment in a very serious post. If you have a problem with decisions made by moderators I suggest you start a new post or pm us.
I'm so sorry to hear of such a complex diagnosis and there isn't a lot I can offer other than it does sound as if there are elements of GCA and the high dose steroids must be the right way to go. In the more than 10 years I have been involved in PMRGCA forums I don't think I have met anyone with an optic nerve tumour, sorry.
The only advice I can really offer is to suggest you cut your carbs if you can to reduce the weight gain problem, it does work - discuss it with your diabetes team. Are you Type 1 or 2? Low carb is being used increasingly in the management of diabetes - why put carbs in that will just increase the amount of medication you need to manage your BS as a result.
I have just noticed it was blocked,but l thought his quiz was spot on with the way PMR can affect us .l am sorry that farzana is going through such a tough time,l hope that things will get better for her and that the pred will continue to ease the symptoms .
I am so sorry you are having such a terrible time. I can't offer any more advice, just wanted to send my best wishes and hope you start to get things sorted and feel better.🌻🌻🌻
Hello farzana100 - my goodness you have been having a very difficult time and I'm sure many members of this forum will gasp at some of the experiences you have had lately !! I am incredulous that it took so long for you to be taken seriously and that the time it took to get treatment for what sounds to me like GCA (which I have myself) may have resulted in the loss of eyesight you now have. My mother was never diagnosed or appropriately treated with prednisone as she should have been and she also loss central eyesight in BOTH eyes as a consequence. But that was decades ago and this should not be happening to anyone now !!
I can see however that the discovery of a tumour has complicated matters but this does not mean that PMR/GCA aren't also involved as you suggest. I am concerned though that they may have tapered your Prednisone dose too rapidly if you are experiencing jaw claudication and the pain you described in parts of your body. Unfortunately Pred won't help the fatigue - which is also a classic symptom of PMR/GCA which is horrid (on top of everything else) as we all know.
If you are feeling depressed and exhausted it is no wonder and it is very important you rest as much as you feel you need to until things feel a bit more 'under control'. I won't go into the whole thing about medicos trying to get people to taper to lower doses of Pred far too rapidly as you can find info on that subject by searching this forum posts if you wish - but given that the duration of this disease is usually nearly 6 years then the whole issue of Pred dose and tapering needs careful consideration and in your situation if it is too fast your remaining eyesight could still be at risk. I hope your next consultations are more helpful and relieve your worry and pain. In the meantime I am sure people here will offer lots of helpful support. You HAVE certainly come to the 'right place' for that !
Thank you all this far for your messages, I will come back later on to reply individually.
I’ve had another night of no sleep...
I’m only on 10mg of Pred now I’m home but whilst I was at hospital I had two separate treatments of IV steroids which were very high dose. That does made me into a crazy person!
Anyway, once again, thanks friends and after I have a nap I’ll come back to you, it’s very heart warming to see ppl respond to my story. 🙏
Don't ever feel you must reply individually if you don't feel up to it or it makes your eyes ache. We should all get a notification and one post that tells us what is happening is plenty.
Hello Farzana, I have just read your post & I am sorry you are going through such a lot at the moment. I don't have PMR/GCA but was checked for it some years ago.
Some years ago, I came across a young lady on Patient UK who had an eye tumour, she was referred to Moorfields & had excellent care, I lost touch with her when she left Patient.
I am a patient at Moorfields & they are excellent there, do ask to be referred.
I hope you manage to sleep for a bit. I can tell you my Consultant's name if you think that would help, he would know who you should see.
Hello Farzana, l second all the advice on here. I don't have anything like your symptoms and am so sorry that no one has taken your seriously, that part of your story, it seems to have been so for many people. What I would say is that on here you will find a lot of "wise old owls" I mean they are wise in years of experience not necessarily age! Do heed their advice. Every piece of advice I have asked for and received has been spot on. I would say that docs are only human beings and don't always get it right or point you in the right direction. It can be a fight - be strong and good luck.
Hi farzana, PMR and pred caused heads sweats for me but suspect it's a combination of everything including stress. X
Sorry to hear about the tough time you have had, can’t help on the tumour side of things, but I did have GCA, and lost sight in right eye due to late diagnosis.
Like Rimmy, I am concerned that you are only on 10mg at present - if you truly do have GCA, then that is not sufficient to manage your illness despite to two high doses you had in hospital.
Do hope you get some definitive news with your MRIs next week, and please do keep us up to date with your progress.
I am sorry if l upset you asking about Marks posts but that was my only means of finding out ! Of course l know farzanas post was very serious ! I did mention that in my second post !!l shall refrain from commenting here anymore,l am very grateful for all the help and advice l have recieved from HU,I still am by far means over PMR,but shall rely on my doctors advice from now on .
I have written a list of questions for my next MDT meeting ( this is a group of all the medics involved in my case) hopefully next week or week after. One of the questions I will be asking is for them to definitively diagnose me with PMR/ GCA rather than; it could be those and then blindly treat for them. They are so focused on the tumour that I feel the rest of me from neck down is being neglected.
Like when I had a PET SCAN and the only two places that the markers showed anything were the tumour behind the eye and my heart. My ECG came back normal and an echo cardio gram was done. The image needed of the part which showed abnormality was not clear during the echo but the docs have dismissed it...
I want the team to re-evaluate me systematically again.
They keep talking about wanting to know more about the back brain scans???
I want to ask about Moorfields but don’t want to upset or offend the docs in my team.
Btw, my team is headed up my Professor Miles Stamford at Dr Thomas’ hospital.
I will ask about the dosage and why it is so low and will also ask about the low carb diet. I am emailing my Concerns and these questions in advance as well so that the doctor can be prepared with answers hopefully. I want to ask about the treatment, how long I will be on it, what the care involved, what if it doesn’t work? Will I require brain surgery after all re the tumour?
With brain fog, I feel I have to write everything down nowadays and keep adding to it all as I remember.
Someone suggested I had Idiopathic Intracranial Hypertension due to the tumour and pressure and headaches and vision problems. Had a very painful lumbar puncture but was never given the results. I have a bruit that makes me hear a whooshing sound in my ears.. it’s called Pulsatile tinnitus- it is basically the sound of my pulse and I can control the sound... it also changes as my heartbeat quickens it slows etc. any question of aneurysm has been ruled out by MRIs.
This is linked somehow to something but again the docs are not interested it seems as it is also quite a rare thing and despite explaining it to them, they have dismissed it.
Has anyone get hit this form of tinnitus. It has us a real sound caused by a blockage of one sort or another. I will keep bringing it to the teams attention .
Which department do you all see for PMR/GCA? Is it a vascular specialist, rheumatoid?
Thanks for your help everyone.
I am blown away by the advice and support in getting here!!
I am so sorry you are struggling with your health, compounded by the confusion about what is going on. I do think the tinnitus is quite a feature of GCA, it’s a sure sign for me that I have overdone things and is pulsatile as you describe. Lots of members on this forum have mentioned it and it was one of the first symptoms I had when I developed the scalp tenderness and headache, along with sinusitis and allergies to just about everything. Don’t worry about upsetting the Dr, Moorfields is THE place to go, if you don’t ask you won’t get! All best!
You mean pulsatile tinnitus is rare? I suspect if they asked GCA and some PMR patients they might find it isn't half as rare as they think! It is mentioned quite often - and their doctors just look bemused.
PMRGCA is traditionally managed by rheumatologists - although it is a vasculitis. Most specialists in vasculitis are rheumies - but the team at the Hammersmith around Justin Mason are real vasculitis experts. There two, can't remember the other name, one does large vessel stuff and the other micro vasculitis I think.
No, not until you mentioned it! I have had tinnitus and most people will be aware of their pulse in their ears at some point but it has never been a problem for me as it isn't long lasting.
I don't know if it is connected with GCA - but you are not alone in having it! There has been research done recently about GCA and ears - but I'm not sure it is published yet.
I have GCA and have found this forum to be a real lifeline. I would only say please continue to post your concerns on this site in the coming days, weeks and months. You will get moral support and sound advice which will help you through the maze of your symptoms, diagnoses and treatments. It will give you a sense of some control over your illness(es) which I have found to be of enormous help. I wish you all the very best and that life gets easier for you soon with proper diagnosis of your symptoms.
I am so sorry to hear about your suffering. It sounds terrifying. I can see why they have moved towards GCA as a possibility. I just pray that this is resolved quickly for you. You need all your courage. Please share the distress this is causing you with your doctors and people around you. Clearly you need help. Let us know what happens.
I gasped when I read what you are having to deal with and I gasped at the clear-headed ( yes, I know it doesn’t feel like it!) way you’re dealing with this. Galvanising doctors, seeking support, making lists - you are a star. Moorfields is the place and your experts will know of it. You’re allowed to ask about it without professional vanities getting in the way. You are on a quest! Thinking of you with great warmth and hope 🤗🤗🤗.
Thank you for your very supportive positive message!
I am on a quest, it feels as if I am having to shout and scream to be heard sometimes but I have to persist. I have no one other than my sons to support me and even though they are grown 29 and 25 yrs old, I wonder if I had a person my age or similar with me at appointments it would add some weight to my conversations.
Anyway, I shall persist.
I am so glad to have found you all on here for such sound advise and immense support!
Large brandy called for - I was known as 'the Brandy Queen', all through GCA. On my 70th Birthday, it was hilarious, all though I had said, no presents. They got together and a bottle of brandy for each of my years. It took 6 years to get through them all. But it is the best pain killer in the world (a tablespoonful), developed by Medieval Monks in France, specifically for medicinal purposes. Those Monks knew a thing or two.
BTW, have you thought of a new pillow:
Gx Suspension Pillow go to this website and take a look. If you decide to purchase one, use the code WL4 and you will get free delivery.
If they will go with you it is always worth a try. Even having a male of the same age as you present can concentrate the doctor's mind sometimes. It's disgusting - but there it is ...
Yes, I agree that it is disgusting but a fact none the less.
I will ask a few people I know and see how it goes. I have another set of MRIs on Monday and am requesting to be seen on Wednesday when they run their clinic at st Thomas’ in London. I have a day or two to find a man lol
I don’t know how old you are but a friend or relative nearer to you in age would have more clout. However, whoever it is, their chief value will be in keeping track of what’s said and reminding you of the points you want to make if you get thrown. It’s very useful to have a third party on these tricky occasions! And yes, the GP may take more care. It took me to go along with my husband to get him tests he should have had much earlier. Gosh. I hope you’re Getting some sleep with all this! 🌺
I’m 51 and am in the majority of cases taken seriously enough to get things done. But definitely it has helped when I have taken my older son with me to remember details that I forget ( brain fog)
I am having immense troubles sleeping.. I probably get about a couple of hours of broken sleep a day. I am going to start on sleeping tablets soon. Hope they work x
I’m rubbish at pacing but trying to reign back. I can definitely pick up energy after a break with my feet up. I think you’ve had such a traumatic time it’s no surprise that you can’t sleep. Sleeping tablets may help you break the pattern. One of my doctors was rather wise and said that even if I couldn't sleep as such I was resting, which was all to the good. That made me feel better. One of my friends gets up and has a piece of toast 😀. I listen to the radio and fall asleep listening to Hancock’s Half Hour then wake up to Poirot!! Steroids definitely don’t help us sleep.
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Flare or nerve pain, or is it the same thing?
Visit to rheumy today re: vision loss GCA
something to make you smile I hope
GCA flare and eye sight
A flare of GCA
