Really confused...how to find a good doctor? Blood test results?

Hi,

I'll try to keep this short but I'm really confused and don't know where to turn. I'm 23 and have recently moved back to England after 10 years living in the US. From age 9 I have had/been aware of poor circulation, knee pain, loose/hypermobile joints and migraine-like headaches. My loose joints led me to many a doctor and a shoulder injury led me to a specialist who thought it likely that I had a connective tissue disease like Marfan or Ehlers Danlos. Fibrillin DNA tests were negative for Marfan. I was also diagnosed with a form of Dysautonomia as a result of 'loose' connective tissue.

As time went on, however, the symptoms I suffered became more and more rheumatological in nature but there lies the problem. I have seen doctors in the US and now in the UK who agree that there is something "autoimmune" about me and they agree that there is something "going on" and yet they won't take it seriously because they seem to think that I'm too young or, well, I don't know what. They also want to prove each other wrong and I get caught in the crossfire. I'm just tired of it all now because I have had symptoms for so long and I feel bad all the time. My knees are so sore and give way randomly throughout the day, my head hurts all the time, I'm tired, cold, skin hurts, joints hurt, my hips hurt, I get mouth/throat and nasal sores, my finger is swollen, my eyes are dry and sore, I can't handle bright light and at last count I had 33 chilblains on one hand. I feel bad. My aunt has Lupus so I know something about it and doctors from other specialties have suggested Lupus to me before (they then say that I should see a rheumatologist but that's the problem...)

At this point I just want to feel better and I sort of feel that it is Lupus. Every time I get a weird symptom and I look it up online I see that it's a symptom of Lupus so I'm really frustrated. The GP I see isn't helpful and the rheumatologist he sent me to see is his friend.

I got blood test results today but neither the GP nor the rheumatologist returned my phone calls. The abnormal results were: high folate. low IgM, high APTT.

I understand that Lupus doesn't always show up in tests and that you can test negative for a while and then test positive. How can I get help so that I don't have to go through years of testing like my aunt has had to? I am meant to be on an MA course but have had to defer because I feel too sick; I just want to get back to 'normal'. Are there any doctors who will look past tests and just understand that I feel ill and that there are some abnormalities in my bloodwork that do actually fit with Lupus or something autoimmune? How do I find a good doctor?

Sorry if this got a bit long--thank you in advance for any help or advice that you can offer.

3 Replies

oldestnewest
  • You poor thing, you must be fed up with the never ending ill health! If you have the money, try and go to a specialised lupus private hospital, in London that is at London Bridge hospital but there are others throughout the country. If you haven't sufficient resources, try and get the gp to refer you to that. I know how frustrating this must be but there is nothing else to do but fight to get to the right doctor, the correct diagnosis and the most appropriate treatment. It takes time, for some reason doctors would rather go with an 'easy' diagnosis rather than one that means long term care. Good luck.

  • Sounds like you have had a pretty bad time. I live in Merseyside in the north west. I travel to London to see a Dr. Fisher at the Royal London Hospital for Intergrated Medicine. Look him up online, he is very good. My gp referred me to him on the Nhs, hope this helps, take care xxx

  • Hi Morphandme - I can't help with finding a doctor, but I do sympathise with your plight.

    One word of caution though - just because a relative has Lupus doesn't mean you'll have it too. I had a great aunt with raging rheumatoid that totally immobilised her. My sister has sjogrens and fibromyalgia (quite mildly, so far, thank goodness) and I have lupus (with kidney involvement, so quite bad). I suspect that one of my brothers will eventually be diagnosed with RA (he has plantar facsiitis and some kind of autoimmune problem with his gums ATM).

    Autoimmunity is a strange beast, and doesn't seem to dump the same load on each person in a family. I am only mentioning it because you need to visit your new doctor with an open mind if you are to get a good diagnosis.

You may also like...