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Best way to prepare for private rheumatology appointment?

Discussion in 'General ME/CFS Discussion' started by justy, Sep 30, 2014.

  1. justy

    justy Donate Advocate Demonstrate

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    I have an apt this Friday with a private rheumy, after waiting nearly to years on the NHS. Now the time has come I have no idea what I am going to say. I have so many different symptoms, such a long and complex history.

    Do I mention M.E or not? (never officially diagnosed anyway)

    Do I mention testing which shows chronic bacterial infections and visit to Brussels clinic? (this is where the positive ANA test came from, although only low titre - do I mention this?

    I made a symptom list, history overview etc to take to KDM in Belgium, should I do something similar? The problem is I have so many problems, the last consultant I saw (endocrinology) didn't want to hear about all the things that were going on, he just wanted to know about my one main symptom - which of course I couldn't explain as I don't have one main symptom.

    I feel like the small things (skin changes, ulcers) are as important as the big things (fatigue, movement disorder - could be myoclonus). But where to stop. also some symptoms where very dominant for a couple of years and then took a back seat - now other symptoms appear more pronounced, but im sure they will eventually fade away as well to be replaced by something else.

    Any ideas or advice?
     
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  2. daisybell

    daisybell Senior Member

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    I would take your list of symptoms, so that if it seems appropriate you can give it... i would hope the rheumatologist will have lots of questions and so if you have as much info as possible to hand, you can give test results etc.

    I think I would hold back from providing diagnoses so that all your symptoms can be considered for relevance! That way, you should avoid or at least reduce the risk of a symptom being put down to ME, if in fact it is a sign of something else.

    Best of luck with the appt.
     
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  3. ukxmrv

    ukxmrv Senior Member

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    I'd save the ME stuff and the test results for last unless the Rheumatologist brings up this topic early.

    The most valuable thing I got from the Rheumatologist I saw was a hypermobile joint examination and a letter / access to drugs for my GP. If I saw one again I'd mention EDS and see what they say.

    Any joint problems? Any painful trigger point areas? Any specific movement or balance problems?

    Have you researched this Rheumatologist and checked they are OK? Some of them think ME and FM are exactly the same. Some think graded exercise is the cure for everything.
     
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  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Justy,
    It is always helpful to take a history summary that the rheumatologist can keep in the records. Date of onset, major ups and downs and specific symptoms. I would try to get it on to 2 pages word processed. I would also write down the specialists you have seen and the diagnoses you have been offered, including ME/CFS. If you start off by saying that you are still not confident that you have an appropriate diagnosis and that you would like the rheumatologists advice on excluding specific rheumatological diseases I cannot see any harm. It may help to say that I had recommended you saw this particular specialist.

    As a rheumatologist, in the context of the ANA, I would be particularly interested in lung problems and skin problems. Colour changes and ulcers on the skin would be particularly important. Hands and cuticles are important.
     
  5. justy

    justy Donate Advocate Demonstrate

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    Joint problems yes pain in small joint - fingers, hands ankles elbows - movement issue yes - type of myoclonus? undiagnosed large arm movement several times a day and worsening as well as various other body 'tics'.

    He was recommended by Jonathan Edwards as being a good rheumy in south wales. He has a specialtiy in ;Lupus, fibro (which don't think I have). Am having a lot of neuro issues at the moment - so maybe he will not be interested, other than this pain is mainly joints and if I overdo is flu like and also eye pain which can be extreme and hangs around for months and then goes again. Lots of other issues too - dry gritty eyes (but not dry mouth often) drooping right sided brow on exertion, lung problems, catching everything going problems. Mouth and nasal ulcers. GERD, stomach pains/gastritis. Chest pain.

    My children are hypermobile - one of them has been ill with M.E like illness, the other has ankle pain with slightest provocation. I have always been able to put hands on floor and could do splits as child, but not other hypermobility for me.

    Thanks for the replies
     
  6. Valentijn

    Valentijn WE ARE KINA

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    I wouldn't mention the ME. It's not really relevant to the rheumatologist doing his or her job, so long as you're giving an accurate and thorough description of symptoms. And bias against ME/CFS is simply too wide-spread in the UK for it to be a safe topic to bring up - though rheumatologists do generally seem to have less of a problem with it than most other specialties.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @justy It sounds like Dr. Edwards is saying that you can say he recommended you see him which gives you great credibility right from the start. I would have a list of ALL of your symptoms, medications, current blood tests, and I would tell him that you were diagnosed by KDM with CpN, Bartonella, with potential plan to start IVIG and antibiotics for the chronic infections, etc. I do not think you need to mention ME but I would tell him that you want to assess if you have an autoimmune or other condition.
     
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  8. Strawberry

    Strawberry Senior Member

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    This is my experience, and what Valentijn said. Take the list, but rheumatologists are typically concerned with their "department" of issues. My rheumatologist was very thorough at the first visit. Hopefully yours will also!

    (oops, I typed this in the morning, and apparently didn't post.)
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    @justy Good luck with your appt tomorrow and keep us posted!
     
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  10. justy

    justy Donate Advocate Demonstrate

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    Unfortunately the appointment was cancelled, but it has been rescheduled for next Friday...
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @justy Bummer but at least you will go next Friday and now have more time to prepare!
     
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  12. justy

    justy Donate Advocate Demonstrate

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    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.
     
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  13. maryb

    maryb iherb code TAK122

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    Its a shame but I wouldn't take the a/biotics until you've had your blood tests as I know you're keen to get started. The good thing about private appts is that the letters come pretty quickly, so your GP will have it quite soon. Also in my experience secretaries to private consultants don't get annoyed if you ask for a copy to be scanned over to the GP ASAP. Its a different world :)
     
    Last edited: Oct 18, 2014
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  14. Gingergrrl

    Gingergrrl Senior Member

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    @justy I am so glad you were able to have the appt with the private rheumatologist and it sounds like you will be getting some proper testing done. I am really happy for you!

    You mentioned that you had bruises all over your legs and I have those too which no doctor has ever explained to me. I've tested my platelets, PT, PTT, INR, etc and everything normal. Right now I only have three bruises but at the most I had 17. They are just on my legs and never on my arms or other places. I've told all my doctors but no one is overly concerned so I have just let it go. If you get an explanation, let me know!
     
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  15. justy

    justy Donate Advocate Demonstrate

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    Yes mine are just on my legs as well! no idea why, my platelets have never been tested I don't think...
     
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  16. daisybell

    daisybell Senior Member

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    That's fantastic Justy!
     
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  17. Kati

    Kati Patient in training

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    Very glad for you @justy that you have gotten a great professional and respectful opinion from a rheumatologist. Keep us updated and best wishes.
     
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  18. NK17

    NK17 Senior Member

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    Dear @justy I'm truly happy for you and the way the visit with the private rheumatologist went.

    I'm proud of your courage and your intelligence which clearly guided you in disclosing just the right amount of information about your ME diagnosis.

    It's not easy to navigate the waters of neglect and ignorance pervading the health system (in this case the one in the UK), the problematic issues we are faced with whenever we meet a new doctor are daunting.

    I hope that your GP will listen the rheumatologist and request all the tests appropriate to your case to rule in/out other diseases (Lupus, Sjogren etc.).

    Most importantly I hope that you'll find and have access to therapies to alleviate your many symptoms and that you'll regain a decent quality of life.

    I understand that you might probably find yourself facing some difficult choices hearing your doctors different conflicting advices, but I'd like to think that it's much better to have more choices than almost none ;).

    Hang in there, we're here to help you see the light at the end of the tunnel.
     
    Last edited: Oct 19, 2014
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @NK17 Amen and well said above!
     
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