LUpus Patients Understanding and Support
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I'm collecting ists

Still no diagnosis but I seem to be collecting ists like they are going out of fashion. Today's latest after another visit to the GP, because of my limb weakness and new worsening balance problems is a referral to a Neurologist. The good news is that so far this year (touch wood) I seem to have the rash mainly under control, everything else seems to be getting worse, but at least I seem to have an ist in my collection for most eventualities.......

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Who is taking overall charge of your condition?

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Nobody officially although it seems to be my physio who is pointing fingers at the moment.

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This must be very difficult for you. You need someone to find the problem. I hope your GP is taking this role.

With good wishes,

Ros

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At the minute he is taking a passive supporting roll, just referring me where and when I like and advising on how to present myself.

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It is probably unreasonable to expect your GP to know your diagnosis as it sounds very complex. I recall you saw a rheumatologist - did the consultant rule out rheumatological issues eg lupus?

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At first meeting he was very supportive and understanding, and even indicated that my symptoms did indeed point towards Lupus. My bloods however were all negative and so he dismissed the idea, rather suggesting that i possibly have some kind of tropical disease that is causing me to present systemic like symptoms.

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If this rheumatologist is unaware of sero-negative blood results for people who have lupus, the rheumatologist is not an expert in lupus. I recommend your GP referring you to Dr David D'Cruz at St Thomas' Hospital Lupus Clinic via the NHS.

If you have been to a tropical country, this would make sense. Is this the case? Did you have tests for a tropical disease?

Would you consider seeing Dr D'Cruz because he would get to the problem rather than leaving you to roam the various departments of a hospital when I am sure you have better things to do with your time!

Be well!

Ros

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I would consider seeing anyone gladly, although the tropical disease prognosis did tickle me a bit. It must be something of a delayed reaction as I haven't left the country for over 5 years, although I did work in some dodgy climes.

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I assume the rheumatologist has done nothing! Please see your GP and ask for a NHS referral to St T - with Dr David D'Cruz who is the head.

If you have private insurance, then see Prof Graham RV Hughes at the London Bridge Hospital (Dr D'Cruz is also there). Prof Hughes has taught almost all lupus specialists.

Please see someone who actual knows what to do to find out what is going on. You can't remain in this state.

With good wishes,

Ros

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Yes you probably need a rheumatologist, do you have a dermatologist yet? I am sorry you have no answers yet but I had to laugh or just a tiny giggle at your collecting itis. I have so many of those. Doctors and diseases. vasculitis, chronic bronchitis, pulmonologist, neurologist, rheumatologist, I have many more but that seems to be the path to lupus or maybe another connective tissue disease.

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Rheumatologist, Dermatologist, Neurologist, Physiotherapist, Immunologist, Ophthalmologist, to name but a few, only one missing really but I guess I fit into that.......................................optimist! LOL

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