Help - Any information on what I do next

[MadgeM]

Hi All, I have been going thru 3 yrs of hell. Cluster headaches, now morphed into pain all the time on left hand side of head, down through eye, painful leukocyte rashes on arms, legs, hands (palm and back), feet (soles and back) which leave dark red stains on my skin, prescribed meds for increased allergies, sleeping for 18 hours when I have a flare-up, memory is so bad it is affecting my job, nailbed capillary damage in some fingers, nails pale/whiteish leading to a pink band before my nail tips, high dopamine and insulin levels in blood leading to blackouts, vision problems, extreme weight gain tho eating less and exercising more, very painful finger joints (been told osteoarthritis), extreme dizziness - thought my mattress was vertical when I woke and held on like grim death (sounds funny but really wasn't) also have these weird bad spells when I feel I am sitting still but my head has been shoved 3 feet to my right?, no balance and falling over a lot. Biopsy (organised by dermatology) was positive for LUPUS. I had to plead to get to a rheumy after that. His first line on meeting me was "I have been asked to rule out LUPUS". Which, he'll now be so pleased about, he has! I had one sets of bloods, proven capillary bed damage (he did not accept this as only 2 nailbeds showed damage!), sent me for Neuropsychologist testing for memory which he wrote "I have seen the report and quote from it - essentially these results should be very reassuring for her as there is no suggestion on formal testing that there are any areas of objective deficit. He finished by stating he had "...no evidence of a connective tissue disorder and there is nothing further I can offer". I am lost.......I have a positive biopsy for SLE - is that not evidence? Can a biopsy be wrong? I have asked him this previously but had no answer. My memory issues have me at the point of receiving a written warning from my employer for the drastic reduction in my ability at work. My family and friends organise something with me and know they have to do a "are you remembering" check as I have forgotten. I also "lose" words mid-sentence which is so frustrating. If my Rheumy has washed his hands of me, can anyone suggest a LUPUS expert based in Scotland whom I can ask for a referral to as a 2nd opinion? I do not want LUPUS, it is a horrible disease and my heart goes out to everyone who has it. I am, however, at the end of my tether and cannot seem to get a diagnosis nor the information I need. any help/advice would be greatly appreciated x

[Paul_Howard Partner LUPUS UK]

Hi MadgeM ,

I'm really sorry to hear about the difficulty you are experiencing trying to get a diagnosis. A second opinion from somebody who specialises in lupus is definitely a good idea.

The lupus specialists I know of in Scotland are;

Dr Neil Basu – Aberdeen Royal Infirmary

Dr Nicole Amft – Western General Hospital (Edinburgh)

Dr Asad Zoma – Hairmyers Hospital (Glasgow)

[MadgeM in reply to Paul_Howard]

Many thanks for your prompt reply, Paul. I have noted the names and will ask about this when I see my (long-suffering) GP on her return from holiday. All I want, like everyone, is to know what is wrong with me and how do I make it go away/treat it. It is definitely getting worse. Many thanks : )

[Hidden]

Hi Madge,

Sorry to hear you are going through such a hard time. Did the Rheumy ever do the ANA blood test for Lupus or was it just the skin biopsy?

I am interested in your leucocyte rash ( is it urticaria ), allergies and the fact that the rash leaves

dark red stains on your skin. These can be features of Urticarial Vasculitis ( there are 3 variants of this ). Some Dr's think that Urticarial Vasculitis ( specifically HUVS ) is a subset of Lupus.

I live in Scotland as well, one of my early rule outs was Lupus but it took me 4 yards and travelling all over the UK to get my eventual diagnosis ( spondyloarthropathy/ Behcets syndrome ). I saw Dr Neil Basu on my journey and he is probably a good, first port of call as he has extensive experience in Vasculitis as well. I know he is willing to give a second opinion and accept referrals from all over Scotland. I stay in the Forth Valley Health Board area and managed to get a referral from my GP without any trouble. I know that other health boards take a different view and it can be tricky, you have no right to a second opinion in Scotland unfortunately.

Please fell free to PM me if you want to chat, I will look ou a link for Urticarial Vasculitis as well.

[Hidden in reply to Hidden]

vasculitis.org.uk/about-vas...

[MadgeM in reply to Hidden]

Hi, no-one has explained the rash other than too many leukocytes pushing through the skin. No-one explained why they are doing that although I have asked. I had very nearly decided just to ignore matters with the medical response I have gotten so far but am going to continue to find out. My GP warned me that he thought the rheumy was going to say "...it was all in my head" yep, that's the level it got to. I had to actually tell myself, at the very least, I cannot physically make my leukocytes bubble up through thought alone!! Had me doubting myself which does make me on edge about going for help. I had a look at a urticarial rash but mine looks something similar to papules that appear as a small blister which then spreads out to about 1cm with a darker red spot in the middle - been told this is blood and that is what is staining my skin, especially my knees. Dr Basu was suggested by the Administrator. I am in NHS Tayside area but will travel if needed. Many thanks

[sublime in reply to Hidden]

Hi, apologies for jumping on this thread. I am so sorry to hear what everyone is going through. I see Dr ******** at Ninewells and he is basically washing his hand of me, despite me struggling with a myriad of symptoms and having Sjorgen's mixed connective tissue, scleroderma and Raynaud's, I also have osteoarthritis etc. I have a feeling I have lupus. He mentioned last year about this blood test he could do, then he never did it (they tend to do that dangle the carrot then take it away from you; costs no doubt is the issue) In 2011 I had a positive Rnp-70 Antibody and U1RNP. I don't think he has done a ANA for lupus, should I ask him? Also I have this stains/rash on my legs most mornings which everyone keeps brushing off and my legs are really sore too. I feel so alone as my GP doesn't care.

[Nonanona]

I hAve similar headaches, migraines too. It was determined thru x-ray and MRI that these particular headaches are caused by arthritis in my neck. I go for radio frequency shots to kill the nerves there. Each shot treatment lasts for about 6 monthso and I then I have the procedure again.Been doing this for a couple years with great success

Not sure if this is what you're dealing with, but worth checking out.

Hope you get some relief.

Sarah Alexander

[MadgeM in reply to Nonanona]

Thank Sarah, this is interesting and could be connected. I have a distortion at the top of my spine just below the neck. I had xrays about 2 yrs ago and they said it was osteoarthritis in my back - I saw the xrays, vertebrae are distorted and tightly squeezed together. I was asked if I had stairs in the house, advised on weight (shopping bags) I could carry and asked if I lived with anyone else. Then handed an OArthritis fact sheet. I have asked on a few occasions if this distortion could be linked to cluster headaches but been told no. I now have a feeling of pressure in my neck and head wakening me through the night plus the pain down through my trigeminal nerve and facial numbness on that side at times. I asked my GP about a possible link to the OA in my spine and she clearly told me that I did not have OA and who told me this? ! I replied that I had seen the Consultant at hospital and was shown the XRays?! Doc then said she thought it was just a "fatty lymphoma" and that was that. This is my problem. I feel I am now seen as "troublesome" by every consultant I see. The very fact that the Rheumy's opening line was "I've been asked to rule out LUPUS" kinda makes me wonder. I will, however, be asking Doc on 21st of this month.

[lupieibbie]

Hi MadgeM

Neil Basu is an excellent Rheumatology specialist and all-round good guy but unfortunately he's currently on a research sabatical in the States for a year; probably returning next June-ish. I only know this because he's my (and lots of other fortunate patient's) Rheumatology Consultant. I've got Lupus, Sjogrens and Raynauds but I know that he sees patients with Vasculitis, RA and presumably lots of other immune -related conditions. Thought you should know prior to seeing your GP.

All the best ..... hope you get some answers soon.