[Unravelling Fast]

Hi,

Firstly thanks to all those who contribute to the boards. It's quite daunting finding my way around and although in some ways it is a relief to read the accounts here - of course it is also worrying.

I was diagnosed with fibromyalgia and CFS in 1994 and both were secondary to cervical and lumbar spondylosis, scoliosis, early onset osteophytosis and wide spread osteo-arthritis. Since then I've had various problems and diagnoses including a positive dx of MS (which was then rescinded) IBS and diverticulitis - but as is perhaps the case with others - no real treatment, apart from painkillers and anti-depressants.

My condition has worsened over the years, but in the past couple of years I've realised it has changed a lot from when I received the fibro diagnosis. Firstly about six years ago, I started to get a rash which was diagnosed as cranial shingles - usually on my chin and sometimes on my nose and cheek comprising a raised red area covered in small fluid filled blisters - swapping from one side to the other. However a recent test came back negative for the Herpes Zoster virus. This rash is always preceded by a scalding sensation and followed by feeling extremely fatigued and very achy or flu-like. I've also had episodes of prickly heat - when I used to positively thrive in warm weather.

I also went from having very low blood pressure to very high for no apparent reason. When I say low - I used to sometimes pass out because of this. Recent blood tests showed thyroid problems (T4) so my doc prescribed Thyroxine starting at 25mcg and presently 75mcg however I am still feeling ill all the time and sleeping a lot during the day. I had really hoped that the thyroxin would be my saviour and I'd regain my strength and energy but alas.

The blisters occur at least once a month and I am currently suffering from the third attack in three weeks.

I was surprised to read on this site that an allergy to Septrin is often a trigger for Lupus as - when I was 20 I had a massive allergic reaction after taking just one tablet. In fact my medical notes were subsequently covered in red stickers with "Septrin" printed on them and my then GP warned me I must never, ever take them in future.

I recently asked my GP about Lupus and he did the blood tests, but these came back unremarkable (including the ANA). However he has referred me to a rheumatologist in the region who has a special interest in Lupus, although he doesn't necessarily agree due to the negative bloods.

I don't really know what to say now :blush: if I knew what I was dealing with it would be easier - knowing your enemy as they say. I seem as if I have been up so many blind alleys. I just feel so ill, everything hurts and I am so tired that I find it very difficult to do much if anything.

I am starting a symptoms diary and I have got pictures of the various stages of the rash so I would like to know if there's anything else I should do and more importantly is there anything I can do on a self-help basis?

Many thanks - even if just for reading this.

PS. I should also mention I had eye problems (raised pressure) - and attend a glaucoma clinic once a year - but just for monitoring.

 

[x_claire_x]

Hiya.. sounds like you are doing alot to help yourself... getting referral is a good step, as is keeping an eye on this site and doing your daily diary, photos of the rashes etc... so now it is to push on to get some answers, which I hope you get soon to start any meds that are appropriate to start making you feel better... I wish you well on your journey...take care,
Claire X

 

[debatat]

Hi, welcome to the site, you have come to a great place to get info and support. You seem to have had a lot of health problems. I was curious about the MS diagnosis which was then taken away? What did they base the diagnosis on and why did they take it away? Keeping a symptoms diary and photos of rashes is an excellent step. Have you seen a dermatologist for the rash? They can take biopsies of rashes to help a diagnosis.

What specialists are you under for treatment at the moment? It is good you are being referred to a rheumatologist. They will be able to do a lot of blood tests to rule out things. It is also good it is a rheumy who has a special interest in lupus as he will hopefully know what to look for, so it can either be diagnosed or ruled out.

I hope your rheumy appt goes well. Let us know how you get on and if you have any questions please feel free to post.

Take care

DEb

 

[Unravelling Fast]

Hi, welcome to the site, you have come to a great place to get info and support. You seem to have had a lot of health problems. I was curious about the MS diagnosis which was then taken away? What did they base the diagnosis on and why did they take it away? Keeping a symptoms diary and photos of rashes is an excellent step. Have you seen a dermatologist for the rash? They can take biopsies of rashes to help a diagnosis.

What specialists are you under for treatment at the moment? It is good you are being referred to a rheumatologist. They will be able to do a lot of blood tests to rule out things. It is also good it is a rheumy who has a special interest in lupus as he will hopefully know what to look for, so it can either be diagnosed or ruled out.

I hope your rheumy appt goes well. Let us know how you get on and if you have any questions please feel free to post.

Take care

DEb

The MS dx is a bit of a mystery - I had a lumbar puncture and various other tests including a fields test and then I received an appointment to see the MS nurse. I was a little stunned, but when I saw my GP he told me that I had MS, although the neurologist had never thought to mention it to me personally. Then the neurologist left the area and the next one I saw said I didn't have it, but she thought I might have epilepsy as I sometimes sort of 'lose time' and I have a lipoma in the brain lining that often points to this. I've seen a neurologist just recently who says neither of these diagnoses are correct and that I am fine and can easily return to driving I think he saw me on a good day :rotfl:.

I might add that even the lumbar puncture was a problem as I have a bony overgrowth from a fractured pelvis. I had warned the neuro of this but his registrar arrived on the ward to do the procedure, saying he thought he could manage. Well, after three attempts the nurse intervened to ask if I might benefit from X-ray guidance. He would have had a fourth go, but I refused. I heard nothing more and found the appointment for the X-ray guidance had gone astray . When it finally took place I was in theatre for over an hour when I'd been told it would all be done in ten minutes.

Further to this I started getting awful sensations in both legs like ants crawling over me together with additional quite severe lumbar pain and very brisk reflexes. I received an additional dx of arachnoiditis as a result of the failed lumbar punctures.

I'm now a bit hesitant about what is done to me as a result of all this.:worried:

 

[debatat]

I am not suprised you are hesitant about more procedures, that sounds horrendous! I am sorry you have had problems with neuros as well, I have to admit they are not my favourite doc, they have the worst bedside manner!!!

You obviously had some positive results to tests to make them think you have MS. I wondered have you ever been tested for APS ( also known as sticky blood or huighes syndrome) ? That can present with MS symptoms. I think you need to get copies of your records so you can see what they are basing this diagnosis on and what tests you have had and what the results were.

Are they treating the epilepsy? and the arachnoiditis? I really hope you get excellent treatment from the rheumy, it sounds as though you have had a really rough time.

I hope they can find what is wrong so you can get some treatment to help you.

Deb

 

[lazylegs]

Welcome to the site.

It sounds as if you have been through a lot. I hope the rheumatologist will be able to find some answers for you.

One question comes to mind. Does the sun trigger your rash?

MS and APS can have similar symptoms. The following link might be of interest to you.

http://www.thelupussite.com/forum/showthread.php?t=71565

Take care,
Lazylegs

 

[Unravelling Fast]

Hi,

Yes the sun does often trigger my rash, although just recently it has seemed that I am seldom without a set of blisters, either at the 'prickly painful' stage, the 'itchy hot' phase or the 'weeping/crusty/scabby' stage :blush:.

Thank you very much for the link - I'll have a look at it straight away.

 

[keebler]

Hi,

Have you ever gone to a dermatologist? They could do a biopsy on your rash. Some members here were diagnosed with sle threw a biopsy.

Welcome to the site.

Take care,
Lyn

 

[Unravelling Fast]

Hi,

Have you ever gone to a dermatologist? They could do a biopsy on your rash. Some members here were diagnosed with sle threw a biopsy.

Welcome to the site.

Take care,
Lyn

Thank you for this, my GP has suggested a dermatologist, however he is keeping this in reserve. He doesn't think it is a good idea to refer to more than one specialist at a time and has therefore referred me to the rheumatologist (with a special interest in Lupus) as a first step.

Of course the trouble with seeing a dermatologist is that by the time I get an appointment I may not have any blisters for him to look at. Believe me, it would be just my luck to have had three lots in two weeks and then to have nothing at all to show the specialist:blush:. I am hoping that all the other symptoms plus the photographs might be enough for the rheumatologist.

Would my GP be able to have a swab test taken of the blisters for Lupus? He took a test to check for cranial shingles and that came back negative, but he said it could be a false result because he had already prescribed aciclovir tablets and cream.

Thanks for your help. :bow:

 

[greenhaggis]

Hi there and welcome to the site!

Youv'e certainly been through alot!

I would dissagree with your GPs comment of not a good idea refferring to more than one specialist at a time, remember its your health not your GPs!

I think sometimes it can be crucial to a speedier diagnoses for multi-specialist joining together and trying to find cause of peoples symptoms.

Let us know how things go!
Remember ultimately it is your choice if your want a Dermatologist referral...but make sure if you ask GP to refer that you research and choose one that you want to see.

 

[Unravelling Fast]

I there and welcome to the site!

Youv'e certainly been through alot!

I would dissagree with your GPs comment of not a good idea refferring to more than one specialist at a time, remember its your health not your GPs!

I think sometimes it can be crucial to a speedier diagnoses for multi-specialist joining together and trying to find cause of peoples symptoms.

Let us know how things go!
Remember ultimately it is your choice if your want a Dermatologist referral...but make sure if you ask GP to refer that you research and choose one that you want to see.

Thanks Lesley,

My GP is very supportive and because I'd had some neurological symptoms as well, had referred me to see a named neurologist under the 'Choose and Book' system.

You can imagine my surprise when an appointment arrived for me to see someone else entirely . I checked with GP's secretary and she confirmed I should be seeing the one he'd referred me to and told me to phone and cancel the appointment with this other one and ask for an appointment to see the one I had been referred to.

When I phoned the hospital I was told that despite the name on the letter, I would be seeing the one my doc had chosen, they just worked very closely together. This was a complete lie . When I got there, the one I'd been referred to didn't even have a clinic that day and I was told I was to see the one on the letter. Suffice to say I got a very cursory examination and told there was basically nothing wrong. My GP was amazed at this, but then he has been seeing me for about five years compared to the neuro who saw me for around five minutes:sad:.

My GP is fuming over this, but I told him not to bother doing another referral to neurology as I am sick and tired of seeing consultants who say I am an "interesting case", but because I don't fit into their particular specialism they don't want to know.

Sorry for the rant - I am well aware that the NHS is understaffed and underfunded and that there are any number of great professionals who are both competent and caring. I've questioned myself whether I'm a hypochondriac - but my GP got quite annoyed with me over that and said I must stop thinking that way.

I don't know if it is just my local hospital, but it seems to be almost unheard of for consultants from different specialisms to talk to each other - you get the impression they'd need a medium :rotfl:

I'll certainly let you know how I get on and thanks for the welcome.

 

[greenhaggis]

I wouldnt give up forever!

I would ask GPs secretary to sort out the mess on your behalf. I'm sure the she and/or even you GP can call the hospital direct and book you in to see correct Specialist!

There is also a department at hospital called PALS (Patient 'something' Liason Service), if you complain to them they should be able to sort problem out!

 

[debatat]

Hi, I agree that is a terrible experience and as Lesley says you could complain through PALS. Don't give up though lots of people have terrible experiences with neuros, they are not reknowned for there bedside manner!!!!!

Provided you get a good rheumy you should have better treatment there, they will look at the whole picture. Rheumys quite often seem to work in conjunction with dermys though when it comes to lupus, so I wouldn't rule out seeing them both.

It is good you have a good gp behind you, that is always helpful.

Hope your next docs aptt is more successful.

Deb

 

[keebler]

Hi,

I think we all have more than one specialist. Your GP could send his notes and lab reports to a dermatologist.

Take care,
Lyn

 

[Unravelling Fast]

Many thanks to everyone.

I had to visit my doc this morning (luckily it's an open surgery) because the pain in my left foot has been making it very difficult to walk. Considering the meds I have including the Durogesic patches, it must be quite something to break through and keep me awake at night . There seems to be a bony lump on the side of my foot, that the GP could feel - so I'm having an X-ray and he's given me some Voltaren Emulgel to rub on with instructions to change this to Diclofenac tablets if it doesn't improve within a couple of days.

I don't know if this is connected, I get the pain from time to time and it lasts for a few weeks and then disappears - but whilst it is hurting it is quite severe. It's a burning pain, very localised and intense, sore to touch and every step is agony.

The blisters are at last showing signs of healing, so I am hoping I can manage a little time without any new ones.

I'm going to have to go and have a nap now as otherwise my nose will make contact with the keyboard :lol:,

 

[keebler]

I'm going to have to go and have a nap now as otherwise my nose will make contact with the keyboard :lol:

I love that sentence.:rotfl: Very clever and true.

Hope you are having a nice nap.:asleep:

Love,
Lyn

 

[Unravelling Fast]

I love that sentence.:rotfl: Very clever and true.

Hope you are having a nice nap.:asleep:

Love,
Lyn

Thanks Lyn,

I was dxd with hypothyroidism a couple of months back and so I don't know whether it is this or the possible Lupus that's making me so tired. I have not slept well for years, although I have no problem at all in falling asleep :wink2:. I know from sleep lab tests that I don't get into the deep restorative delta wave sleep and in fact I start dreaming within thirty seconds of falling asleep. My friends reckon I could write books based on my dreams, some of which I wouldn't mind having again - but others, featuring wasps and zombies etc. - not likely .

Anyway I digress :blush: I am hoping that the daytime sleepiness might get better once the thyroxin dose is stabilised, my GP started me on 25mcg as he always tries "baby doses" as he calls them with me :lol:, then I went up to 50mcg and now it's 75.

Unfortunately falling asleep over the laptop is a common occurrence for me, as is waffling on.............:blush:

 

[Unravelling Fast]

Got my appointment through! Now the questions?

Hello again,

I haven't been around for ages due to a number of things including an unplanned last minute holiday in August to Rhodes - with 60 SPF, a very large hat (think Stockard Channing in 'Practical Magic':bigsmile and large sunspecs. Followed immediately (got home at 3.30a.m. in hospital by 1.30p.m.) by facet joint injections. Then DS had his ruptured ACL replaced with an 8cm graft from his hamstring, after which we all got Swine Flu. We suspect he picked this up in hospital since the woman across from him (coughing fit to burst) was actually moved to another ward in the middle of the night!

Anyway - the X-rays I had done on my foot for the sudden excruciating pain (mentioned in another thread) haven't come back yet, although it is more than a month , but the good news is I have an appointment to see the rheumatologist with an interest in Lupus at the end of October.

I am full of trepidation, worrying that I may miss out something vital - especially as you can bet with my luck I will be having a great week with no visible signs of anything!:umm: It doesn't help that depression has kicked in big time, and my sleep disorder (constant dreaming) is bad at present:yawn: so I feel all confused.

I really need to make a list to take with me, I have taken photos of my face at its worst (the camera survived :lol so I'll print those, but any hints on what the most important things are that I should mention would be great.

 

[Kyphi]

Hi There, thought Id just drop in and say hello.
Im in the NE too, my exprience has been different to yours in that initially my GP was hopeless (now changed and have a fantastic one), but I have two consultants - both Rheumatologists and Im finally beginning to get some relief and some control over the disease.
If you need to ask any questions about how I went about this, (especially since we live in the same part of the world) leading to eventual and quite quick resolutions then please send me a PM.

Take care and I hope you get some results soon :wink2:

 

[KarolH]

Hello and welcome to the board. I am not sure how I managed to miss your initial post, sorry but better to welcome you late then not at all.:lol::lol::lol:

I was dx with MS and lived with that incorrect diagnosis for over 3 years before finally the truth started to show when my blood work FINALLY started to show some abnormalities.

I really think the diary and pictures are very smart and bring them with you to your appointment. Also it helps to bring someone else with you as they can help you remember things the doctor says and possibly jot them down. Bring a list of questions you prepare with you and have all of your questions answered.

APS really does mimic MS so if you have not been tested for this then i think you should insist on the blood work being done. I wish you luck moving forward and let us know how your upcoming appointment goes.:wink2: