I had my appointment yesterday and it went very well. The Doctor was very kind and thorough. I told him exactly the truth - that I have fallen into a diagnosis of M.E by default, have not been properly diagnosed, now have a weakly positive ANA and wanted his opinion as to whether there could be a rheumatological cause to my illness.
I gave him a two page, bullet point list of history and current symptoms - he seemed impressed that I was so organised (I also had latest blood tests showing ANA, Low D3, low Iron etc).I was very impressed that he was so thorough in thinking of differential diagnoses for me other than M.E and said that he felt there was a very strong possibility that I may have either Lupus or Sjorgrens, or both, either as the primary or secondary disease.
He said a number of my symptoms (mainly lung issues, nose and oral ulcers, facial flushing, lymph node swelling) where very indicative of Lupus. He was very interested in my response to recent oral steroids (all pains in hands, swollen lymph node, haemorrhoid pain etc completely disappeared for first time in years.) when I mentioned this, him and the nurse exchanged a knowing look.
He did a very thorough exam - rhombergs, reflexes etc. Noticed the bruises all over my legs that I had forgotten to mention. He is the first person to actually look at my body!
Another interesting thing was to do with my lung consultant. I explained the problems I had been having, but said my pulmonary specialist was a bit stumped by me as he couldn't see objective evidence (apart from some scarring in one lung) of my reported breathing difficulties and infections. He said that this could be consistent with Lupus, where patients report chest pain, breathing problems and can have reoccurring infections and low grade inflammation, and that my pulmonary specialist may just not be familiar with this kind of presentation. He said he will write to him with his findings in the hope that it will help the lung Dr to see a bit more clearly.
The rheumy said he had often given his Lupus patients antibiotics for long periods to cover them against constant infections of the lungs, and also let them have abx at home to use as and when needed. This is the approach Dr Myhill has suggested for me and that my pulmonary specialist has been strongly against (he says I shouldn't have abx without a positive sputum sample, by which time I am usually so ill ti can takes months to recover).
He was interested in my results from KDM and said that Lyme disease was something he was going to mention. I didn't dwell on the KDM stuff or tell him about my treatment plan, but did mention the possibility of antibiotic treatment and he said that some of the older abx like the ones I had taken from KDM also work as anti inflammatories so that could be going on and he wasn't against the idea, but as I say I didn't go into it.
We then made a plan, which I am very happy with:
He will write to my GP and request a full battery of specialist tests to rule in or out Lupus, Sjorgrens etc. This should happen in the next few weeks. He will also write to my local rheumy and tell her he strongly suspects Lupus and give her the nudge to see me as soon as possible in her clinic with the test results in hand. He said he knew my local rheumy and had worked with her in the NHS for a number of years.
He also offered to see me back at the private clinic if I wanted to, but the first option is better as it will not need to be paid for by me. He kept saying that I certainly did need a full work up by a rheumatologist, that my symptoms where not all consistent with M.E, that the lung issues and nasal ulcers where a red flag. But of course the lung issues predate the other problems and this could just be M.E with concurrent lung problems, but he strongly suspected not.
He will also write to my NHS pulmonary specialist.
One other thing he kept saying was that he could see I certainly wasn't depressed, and that IF it was Lupus my anxiety and cognitive issues could be caused by neuro lupus, which was not that unusual. The only issue now is that if they do find Lupus, they will want me to try steroids (he was keen to discuss this, and wondered how I would fare on say 15mg a day of pred for a while - I told him I was almost psychotic on 40mg day) and KDM says this is contraindicated int he case of chronic bacterial infections - we certainly don't want to be depressing the immune system, and steroid use can cause infections to go out of control and worsen health overall in this scenario - indeed every time in the past I have had to take steroids for lungs I have then had a down turn in my health for some while after (although not during)
I am also wondering if the two abx I am supposed to take from next week will interfere with the test results - especially as they may be anti-inflammatory in nature - I didn't think to ask him at the time...I have put off starting them for so long now, I just want to get on with it, but don't want to jeopardise the results.
All in all iam very happy with the outcome and think it was well worth the £200 it cost.