Jessners

[tee8077]

Feeling a bit fed up here. I posted a couple of months ago saying that my last biopsy showed lupus, they took a further biopsy of "normal" skin to compare it. I just got back from my Dermatology appointment and she's said it''s not lupus. I've got a neurology appointment next week for results of MRI ruling out MS too and no idea what I am going to tell them at the medical, how am I going to explain I have all these symptoms but no diagnosis?

[Penelope-Mary]

How frustrating! Lupus as you'd know can take up to 7 years to diagnose. So many on this forum are in the same spot. Hopefully they will continue to search for answers for you and don't be surprised if they revise any tentative diagnosis you've been given.

All the very best

🐳🌊🐬

[Barnclown]

I'm with Penelope-Mary: hang on in there...this can't be over that simply!

Many on this forum will be reading your post & relating to it. Took me age (decades) for the NHS to figure out my SLE, for instance:

A really good dermatologist told me my face rash was perioral dermatitis (the fact it didn't respond to her treatment but does now to Rheumatology's sort of proves she was wrong...BUT she diagnosed my lichen sclerosus correctly

My gp referred me to neurology for MS investigations due to my persistent numbness, foot drop etc. Neurology' tests were neg....the consultant never even saw me to discuss what might be underlying my signs & symptoms...and my gp just shrugged his shoulders

I wish I'd had this sort of forum beside me way back then...I'd have known how to pursue convincing diagnosis...but, hey, I'd never even hear of lupus & immune dysfunction or connective tissue disorders. ...and the NHS convinced me I could cope with the multisystem degeneration & I should cope because it was all "normal"

So, please remind us: have you been referred to a rheumatologist at a lupus centre of excellence? Or are you starting with dermatology & neurology?

Courage, tee....we're right by your side...

🍀🍀🍀🍀 coco

[tee8077 in reply to Barnclown]

Thank you both for your encouraging reply's. I wrote in frustration yesterday, the medical assessment is on the 25th of May.

I was diagnosed with Jessners in June last year and started hydroxychloroquine and thought "yes! I'll be feeling better by Christmas and will start applying for jobs" but I had an allergic reaction to it after 3 days and had to stop and was told there is no other treatment.

I think the biopsy showed lupus when she took a bit deeper into the tissue, the comparison biopsy was a tiny punch biopsy so probably not enough to show anything.

Although I have been having skin issues for as long as I can remember, the journey began seriously nearly three years ago when I had a frozen shoulder, my skin was flaring at the time and the GP (was ready to retire and probably clearing up loose ends before he left) referred me to Physio and Dermatology, I ended up being booked in for an MRI of my shoulder and waited an age for the appointment. Meanwhile I saw other GP who prescribed me Tramadol, amitriptyline and co-codamol etc. Finally, at the end of my tether I saw another GP and told her I had showed pictures of several skin rashes and even pictures of my face drooping on one side and was sent home without investigation by more than one Doctor at the practice. Dermatology discovered my b12 problem and low vit D amongst other dodgy blood work but whatever Doctors I seen refused to join the dots, this GP referred me to neurology. I still had no MRI on my shoulder yet so when I saw the neurology consultant and he done the initial exam and said I should have an MRI on my brain I mentioned about my shoulder and had both scans on the same day. Days after the scans I got a letter asking me to go for a lumbar puncture and further MRI, no explanation in the letter, no phone call, so I asked the Doctor who was doing the LP why I was having it and he said my brain scan showed signs of demyelination and several strokes. LP came back clear but they wanted a further scan of my cervical spinal cord to look at an area. I got a letter saying what showed up was probably a movement artifact and I am seeing the neurology consultant on Monday to discuss it.

In Feb this year the orthopaedic consultant looked at my shoulder scan and pondered for a while, he asked me to briefly describe some of my other symptoms and I told him I have problems with my hands that have never been looked into and he said he thinks I should see a rheumatologist, I am still waiting for the appointment.

I'm worried I'll be sent home on Monday to get on with it but the Jessners dx does not account for all my other symptoms. When I get this medical assessment on the 25th they're going to deem me fit to work and as much as I desire my life back I have no idea how I am going to cope leaving my house every day and where I am going to find the energy to do that.

I've seen on this forum for a couple of years and learned so much from reading other peoples posts, yes, it keeps me from going nuts!

Thanks again so much for replying.

Tina

[tee8077 in reply to tee8077]

I live between Stirling and Glasgow, we never know which hospital we will be sent to when we are referred, thank goodness for my Dad, 75 years old who drives me all over the city for appointments.

[Barnclown in reply to tee8077]

Hello again: you've taught me something...I had to google jessners & found this on one of my fav websites:

rarediseases.org/rare-disea...

So, now am understanding the Jessners/lupus issue 😊

please let us know how things go on Monday at neurology

The way your rheumatology referral is being delayed fills me with dismay....no doubt you've tried phoning the clinic to see where your appt is...if I got no joy from that, I'd make my gp write the clinic asking what's happening...but I'm in the uk: do these tactics work in Scotland? 🙄

🍀😘🍀😘🍀😘

[tee8077 in reply to Barnclown]

I think I've read every article on the internet on Jessners lol. My next door neighbour was referred the Rheumatology after me and she has already been seen. There is a number to call and check but I've been putting it off calling, it showed on the system when I told my Dermatologist I had been referred by the Orthopaedic consultant, maybe it takes longer that way. I think they are snowed under at the moment as everyone I speak to knows someone attending Rheumatology, Fibromyalgia is rife here! So, I'm scared and reluctant to contact any consultant in case I annoy them and it has an affect on their attitude towards me. I learned things on this forum too!

x

[Wendy39]

Hello. Sorry to hear of your frustrations with your health and lack of diagnosis to fit all of your symptoms. A lot us here have felt the same at different times and this site is a great wealth of knowledge and support. I just wanted to add that I had a punch biopsy of a rash at the nape of my neck in January 2016. Until that point, when I'd shown various Dermies, they'd replied something like, "well, I don't know what that is, but it isn't lupus". Well, they were wrong, (and lazy). So when another dermy said he'd biopsy it, I was all for it. I saw my Rheumy before the dermy and I asked her what the biopsy results showed and she said they were inconclusive, they don't help us. I went away feeling very let down and disheartened, as I had found the whole procedure quite nasty & uncomfortable etc and it was all for nothing. Then I saw a different dermy at clinic, again she said inconclusive, it didn't help us. I was devastated and quite unwell by then. The next dermy appt, I took my husband as we wanted answers and a plan - I was very unwell by now and had handed my notice at work. Luckily this appt was with the very capable Dermy who had done the biopsy procedure - when I posted here I called him my Knight - as in my Knight in Shining Armour. He went through the biopsy report in full and drew diagrams for me and my husband. The report did not say "it's lupus" but when he talked it through to us, he said that there were cell changes and signs of lupus at every level. It was lupus and it was active, from inside, out. So my Rheumy and the other dermy were wrong when they said that the biopsy didn't help. My Knight then went on to give me steroids and finally MMF to treat my active disease. I had been suffering lupus since about 2008. It took 5.5 years to get a diagnosis and it's now 3.5 since that diagnosis and I'm still trying to get the drugs balance right and get all my symptoms worked out. It's a very long process, unfortunately. But you are here and I think you will be pro-active in your health care, which will give you a big advantage. Stay strong and positive and keep in touch. We'll help however we can. Good luck with your appt next week and let us know how it goes. Best wishes, Wendy (PS, a lot of us here agree, that unfortunately even though we're in 2017 doctors respond very well in appt and are much more eager to please, if you have a man with you. Sad, but true with a lot of them. Do you have anyone you can take with you? And take a list of questions, so you don't forget anything. Don't be afraid to get the list out and let the doctor see it, it helps concentrate the mind.

[tee8077 in reply to Wendy39]

Thanks Wendy, I have been reading your posts since I joined HU too. I've had umpteen biopsys as well and the only ones that showed anything were the ones that went slightly deeper, I've never had a positive result from a punch biopsy (that I can remember) They take from my shoulders when it looks "juicy" but I got the feeling yesterday It's the end and I'm stuck with this diagnosis that undermines what I am actually going through. Hopefully better luck with the rheumatologist. My Dad takes me to appointments but he is 75 and doesn't come in with me, I don't really have anyone else besides my lovely Daughters who are interested enough but are both working. Depending on how things go in the next few weeks I'll think about changing to another Health Centre in my area and start from the beginning, maybe write a letter, I dunno. It's exhausting even thinking about it.

Tina x

[Wendy39 in reply to tee8077]

Yes, unfortunately it's can be a battle to get the right doctor, diagnosis and treatment plan, something we could all do well without, on top of our poor health. I'm just really grateful for the strength that this site and its' members have given me. You just haven't found your Knight yet. Best wishes.

[Paul_Howard Partner LUPUS UK]

Hi tee8077 ,

Sorry to hear that you are experiencing so much difficulty getting a diagnosis. If the dermatologist now believes that it is not lupus, have they given any suggestion of what it could be? Have you been seen by a rheumatologist for further investigations?

If you are not satisfied with your current diagnosis and treatment plan, it may be best to ask your GP for a referral for a second opinion. You can read more about doing this in our blog article here - lupusuk.org.uk/getting-the-...

[tee8077 in reply to Paul_Howard]

Hi Paul, biopsy in March showed lupus then they took a punch biopsy to compare. I had a diagnosis of Jessners last June, walked in to Dermatology in March mid flare and she told me to come back the next day as she had a biopsy cancellation, when this biopsy showed Lupus she got me back for a further biopsy to compare and yesterday I got the results and she said Lupus didn't show on the comparison biopsy. So, I am back with the Jessners diagnosis. I am allergic to hydroxychloroquine and have been told there is no alternative treatment besides topicals. I am waiting for a Rheumatology appointment (referred by orthopaedic consultant while reviewing shoulder MRI) ... I thought if it showed lupus then it was lupus but mines seems to have dissapeared!

Thanks for the link Paul.

[Wendy39 in reply to tee8077]

That's VERY confusing! And just to confirm mepacrine is used for lupus skin issues too. I'm waiting to start it as well as hydroxy. Barnclown posted a link for me. I'll find it now. Maybe you need a different dermatologist???? x

[tee8077 in reply to Wendy39]

I feel unable to say how I feel when I go there, I had no clue at the beginning and gradually I just sit there and listen to what she decides, she is lovely! but I think instead of making a decision she's relying on the lab. When the positive biopsy came back she said "don't panic! people hear the word Lupus and freak out but skin lupus is nothing at all scary like that" My very first biopsy she took from me showed possible Lupus. You would have thought that knowing I'm in all these different departments with all these symptoms it might click with someone.

[Wendy39 in reply to tee8077]

lupus.org.uk/what-is-lupus/...

Here's that link. Mepacrine is an antimalarial medication, like Hydroxychloroquine. If hydroxy doesn't suit you, this might be a good alternative.

I think you need to see a Rheumatologist and explain all your symptoms and get a new Dermy. Yours seems not to be able to understand her own test results. Don't let her take any more biopsies! There won't be anything left of you!!

I can't remember if you've mentioned your GP? Is s/he helpful and supportive? You need to discuss all of these concerns with a good GP and soon, especially if this neurology appt doesn't provide any answers.

[tee8077 in reply to Wendy39]

Thank you so much Wendy. I hate to agree with you which makes me feel quite sad since I've always gotten along so well there. I avoid my GP at all costs, they are useless and suspicious and I feel mocked every time. I will phone tomorrow and chase up the Rheumatology appointment.

Thank you for the link too, much appreciated.

[Wendy39 in reply to tee8077]

I really don't want to cause you upset or anxiety by my posts. It just sounds like your Dermy has put you through a lot of biopsies but still doesn't have the answers you need. I'm just trying to help and encourage you to keep searching for the answers to your questions. Stay strong. x

[tee8077 in reply to Wendy39]

I know Wendy, I thought the last biopsy would be the last and things would move on *sigh* I'll have to keep fighting or else I don't know what will happen. I'll keep in touch and let yous know what happens on Monday at Neurology.

Thank you for your encouragement.

Hope you have a peaceful night.

Tina x

[tee8077]

Well, that;s me been discharged from Neurology. He said nothing showed up in any of the 3 MRI scans I had or the lumbar puncture.

[Wendy39 in reply to tee8077]

Hello. Well that must be a relief. You can rule out MS and a few other nasty things. Just Rheumy & Dermy issues to sort out. Have you thought about asking GP for a referral to a different Dermy?

[tee8077 in reply to Wendy39]

Hi Wendy,

Very much relieved of course, thanks.

I phoned the appointments line when I got home to ask about Rheumatology appointment, no referral has been made so the lady gave me the number for the Orthopaedic consultant I saw on the 12th of January who suggested it. When I first had my frozen shoulder I was seeing a particular GP who retired and a young female took over from me, I got really upset in her office one day, I was in so much pain and she was going to write me another prescription for pain killers and I said no, they are not working and she hadn't even examined my shoulder or anything. After that I made a point of not seeing her and asked for another GP the last time I went down there (I try to avoid) I already knew she wasn't passing on my letters from Neurology but it was confirmed today that she's not done anything about any correspondence concerning me so I think it is time to put pen to paper and make a complaint to the practice manager, I'm fuming and worried because my Dad has been seeing the same GP.

Anyway, the lovely Secretary I spoke to has left a note on the OC's desk explaining GP is dragging her feet and asked him to make the referral to Rheumatology personally.

I've not got another dermy appointment until August so hopefully I will have seeen Rheumy by then and can figure out how I'm going to approach them without feeling like a mad woman.

[Wendy39 in reply to tee8077]

I would say that a complaint to your surgeries practice manager is a good start. I'm afraid with our complex rare disease, that is misunderstood by the vast majority of the medical profession, let alone the general public, we have to be really pro-active and stay one step ahead of them. Time to kick ***. Good luck. Keep us posted. Wendy

[tee8077 in reply to Wendy39]

Thanks Wendy, I do have the opportunity to change practices so I'll think about that as well..when I find the energy!

I'll let yous know how things are going.

Tina

[Wendy39 in reply to tee8077]

I would say that a complaint to your surgeries practice manager is a good start. I'm afraid with our complex rare disease, that is misunderstood by the vast majority of the medical profession, let alone the general public, we have to be really pro-active and stay one step ahead of them. Time to kick ***. Good luck. Keep us posted. Wendy