So following on from my previous long post, I had my telephone consult with the lupus unit tonight so wanted to update.
Apparently between the blood test results and the physically presentation she feels that there is currently no active lupus - the swelling I present could be soft tissue or even skin with no clinical evidence of joint involvement. No real answer for why I have things like this week where my right wrist has a definite sprain type injury without any cause unfortunately.
Definitely thinks fibro and hypermobility are causing most of the symptoms and solar urticaria creating the stronger reactions - photodermatology disagree as it’s not normal presentation outside of the skin reaction which is the easiest to manage. I asked about hEDS and she pretty much said they are the same and there’s no treatment for either so I think I’ll have to try my rheumy if I want that one looked into further. She told me steroids benefit me as they often just make people feel better which I think is a bit of a cop out but I get what she’s saying about not wanting to go on them long term.
Wants me to go back on nortryptaline and up the dose to see if it helps as she thinks sleep improvement will help fix a lot - it really doesn’t fit in with the past problems but more sleep will be appreciated anyway so may as well give it a go. Offered me access to a psychologist to help deal with long term chronic illness which I respectfully declined. Again I understand why but it’s a cop out.
The lupus anticoagulant test still needs redoing as the previous positives were too long ago and too far apart. If it’s weakly positive again she doesn’t think APS is the correct diagnosis but it would indicate stickier than normal blood so it’s something I just need to make doctors aware of. I kind of agree with her but I think it still forms part of a bigger picture.
The previous brain scan result would usually be a possible MS marker but we both agreed that it’s probably a bit of a blind alley as I don’t fit that picture at the moment.
She did say that she thinks there are probably a number of different things going on with me and that we won’t get a single diagnosis that waves a magic wand and fixes everything. I bought up mast cells and she indicated that she had noted to look into whether I had seen an allergist at any stage as it had stood out to her as well. She can’t cross refer me but has suggested that I talk to my gp about a referral to an allergist/immunologist with a special interest in mast cells as they may wish to refer me locally - I think it’s unlikely that there will be the expertise in my area but you never know. It definitely seems the way to go next.
So that’s me signed off from the lupus unit with the lupus diagnosis now removed and she’ll send me back to my rheumatologist to deal with fibro although apparently the only thing I can do is Pilates, cycling and swimming with targeted physio to help, none of which have been successful to date unfortunately. I’m going to see if I can sneak in a steroid injection with my gp when I see her because I’m feeling awful at the moment and if I’m not getting any other treatment at least I know that one works and then see where I can go from there.
To be fair I think the consultant had taken more on board than I realised but it leaves me in no mans land and pretty much back at square one. At least this time I have an idea which square I want to move to next and it just remains to be seen whether it turns out to be number 2 or not.
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Mifford
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Hi, I have problems with mast cells, but to be clear, I had sero negative results or weak results for Hughes Syndrome/APS for years, not the case now, also I refused to entertain a diagnosis such as 'Fibro'.
When I ordered my own detailed and private test, it was clear that I had a thyroid problem, which was making everything worse, which had not shown up as most doctors only look at the TSH! This paper which you may have seen before is a good read: the-rheumatologist.org/arti... I also have Lupus and Sjogrens. MaryF
Hi Mary. I think our posts may have crossed. Thyroid is one thing I tested positive for with hashi’s but it was ignored for a long time. I found an amazing endo locally who has me very well trained before he signed me back to my gp so although it’s gone a bit odd recently it’s generally been very well controlled with a mix of thyroxine and liothyronine although they do have to be brand specific or it all goes a bit wrong
Fibro I don’t want to dismiss out of hand as I know there are people who suffer badly with it and based on the reactions at tender points I do understand why she’s diagnosed it but part of me does feel like it’s a “convenient” box to put me in and it certainly isn’t the main driver or the only thing that is going on so I was quite relieved that she said she thinks there may be multiple problems as that helps me be able to push harder with my gp. It is frustrating to have to go back down that route again and start from scratch rather than her using her knowledge and influence to help recommend a referral to someone more experienced though.
I am also treated by the photosensitivity unit at Guys as my only other 100% confirmed diagnosis is extreme photosensitivity and solar urticaria which seems to be causing the majority of the reactions. The team there are absolutely fantastic and couldn’t be more helpful and really work with me to find solutions. They were about to sign me off but are now getting me back in and I think they may well prove to be a great help. They still find me interesting in a way that attracts them so that could well work in my favour with any luck.
The biggest problem is that without places like here where I’ve had fantastic help how on earth would I know where to go next and the system really shouldn’t be relying on patients having to educate themselves so extensively in order to get help .. but that’s a whole different discussion 😊
Yes it is tricky, I found by treating my Thyroid plus vitamin D, B12, Folate and Ferritin and avoiding gluten, the so called Fibro, disappeared, not everybody suits Levo thyroxine. Mary F
I don’t get why she’s saying fibro and hypermobile but not looking at hEDS either or at the very least suggesting it’s looked at by someone with more experience of that illness. I do fit a lot of fibro and that hypersensitive pain is there but it doesn’t fit the entire picture so I won’t be letting it just drop don’t worry as there must be differences between the two and not getting the right one could have long term implications.
I’ve emailed Masto Uk to ask them to recommend a consultant familiar with MCAS as well as Mastocytosis to bombard my gp with as much info as I can as I think that’s the best route to start down first and then spread out from there as needed. From what I’ve read hEDS is often hand in hand with MCAS so I’m hoping the right consultant will recognise if that is relevant as well. If there isn’t one in my area I have the names you gave me as well, thank you.
Thyroid I was diagnosed with first with hashi’s many years ago and it was my endo that recognised that there was more going on and helped me push to get the auto immune side looked at. Funnily enough my thyroid had gone hyper when I saw her which sparked off my current period of “flare” but I get all the hypo symptoms when I go hyper including weight gain. Something has definitely gone odd with my thyroid though as my FT4 is going down when I’m hyper and has gone back up with my TSH now I’m back to my normal range (I have to keep my TSH in a range of 0.3 to 0.9 or I feel awful). I’m keeping an eye on that and if it keeps playing up I’ll get another referral to my locale do who is absolutely amazing.
Sjorgens was tested when I first had the lupus diagnosis and I was told I had sicca symptoms but not sjorgens. I’m not sure if that’s ever been reviewed since.
The nortriptalyne is another odd one - if I take a single amiltryptaline it knocks me out and I am totally hung over the next morning and in pain from not moving all night but taking 3 nortriptalyne I wake up after 4 hours and the sleep is better quality but I then still can’t get any more sleep and still get up with the same level of stiffness and pain as normal so it doesn’t seem to do much. I’m not sure how much I want to keep upping it and certainly don’t want to be taking sleeping pills my whole life especially when I don’t think they have the right cause. To be honest cocodamol works better anyway.
The lupus anticoagulant test I’m not sure what they will do if it’s positive again but these pages list a rheumy in Eastbourne who specialises in APS and although it’s not my area it’s the next one along so might be able to get a referral there to at least get that one either properly ruled in or properly ruled out.
The long road continues but hopefully looking at it with fresh eyes will prove to be a good thing
Well today is looking up. I saw a new GP at my surgery today so went in and bombarded her with info about the reactions I keep getting and why I think it is more than fibro. Gave her the 3 page printed summary of my GP history, 2 pages of symptoms and reaction descriptions, a list of past treatments etc and photos showing her how my hands react and go down again as quickly as it starts.
I said that the lupus consultant had suggested immunology as the next step and gave her the names of Dr Gratton and Dr Wagner both at Guys - I pointed out that as I’m so unusual being treated by different consultants at different hospitals leaves me stuck in the middle trying to manage the position and she agreed keeping everything under one roof was a good idea. I started to explain that Dr Gratton is dermatology with an interest in systemic allergies (I’d been warned not to mention mcas) and that Dr Wagner deals with immunology which might give a broader picture ... so she asked if I wanted referring to both and she can do that today. You could have knocked me down with a feather!! Seems slight overkill but as I suspect it will be a referral to the department rather than the specific doctor I instantly figured I wasn’t going to turn it down as the double hit might give me more options.
I’m not holding my breath until I have appointments in hand but fingers crossed it goes as smoothly as this morning!
She also confirmed that the retest on lupus anticoagulant has been approved so I don’t have to drag to the hospital to get it done which is a relief.
I’ve now got another flare and migraine from being under the fluorescent lights so asked for a depo injection - she was less sure about this. I think it may be harder to get now the lupus dx has been removed but I pointed out that I feel awful and nothing has changed other than nobody knowing what the problem is now. I’m on no treatment for anything other than my thyroid right now and steroids are the only thing we know works so she wants to look at the background first and will come back to me. My head is currently banging like a drum so I’m hoping she does that quickly.
Thank you, One way or the other I should be on a better track at least - if it’s not mcas, hEDS or APS then at least the immunologist will be looking at it through fresh eyes. I was talking to my pharmacist and he was amazed that I’ve never seen an immunologist ... our old doctors have all retired recently and there is a fresh new batch in. I’m guessing the old ones may have been working from the old medical manuals 😉
I had my letter from the lupus unit signing me off at Guys last week. It appears that lupus hasn’t actually been removed as a diagnosis but she’s now out alongside it stating why it was previously diagnosed and has stated that she can’t see evidence that it is currently active. I guess with a positive ANA they can’t really rule it out totally.
Anyway her letter then states that she things I should be seen by an allergist/immunologist with a view to a possible mast cell dysfunction. I don’t know if that’s off the back of me mentioning it in passing but certainly gives it more weight and I’m guessing she wouldn’t have put it in black and white if she didn’t think the symptoms backed it up but knowing how doctors don’t seem to like mentioning it you could have knocked me down with a feather.
I’ve also had a letter to book my appointment at Guys for dermatology. Annoyingly it doesn’t give me a consultant choice and I was hoping it would be specifically to Dr Gratton but it’s a step in the right direction at least. I’ve now managed to book an appointment for 3 April. The only problem being the latest time I could get was 10am and travelling from Kent makes that a bit of a challenge. I’ve made a temporary booking at the premier inn in borough market for now and will see about staying the night before depending on how I’m feeling nearer the time.
In the meantime I managed to get a steroid injection last Thursday to make me feel better and was looking forward to a better weekend. All going well until about 8pm Saturday evening when out of the blue I doubled up with stomach cramps. Next thing I know I have food poisoning hitting really hard. One second I was sweating so hard I was leaving puddles on the bathroom floor and the next I was shivering so much it felt like I was in an ice bath. Then when I started passing blood I recognised another bout of bacterial dysentery having had the same thing 2 years ago. After nearly 20 hours I finally managed to get the on call doctor to send a prescription to the chemist for an anti sickness/anti nausea tablet which worked wonders and I managed to stomach some dioralyte. Much better today and starting to eat some crackers this afternoon as I’m starving but still getting bad stomach cramps. Poor old hubby knows I’m ill but he’s never actually seen me reacting that strongly to being ill before and seeing me shivering so badly and so quickly after being absolutely fine just before I think scared the life out of him. Fingers crossed this is then last time that particular bug raises its ugly head though - not fun.
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