Advice on how to get a diagnose

I am new to this world and could do with some advice regarding how to get a diagnosis.

In short my story is this: I woke up three weeks ago with a very swollen foot for no reason. My GP referred me to an orthopaedic who suspected I could have a stress fracture. An MRI ruled out the possibility of a fracture or muscular injury of any kind and the report noted there is just “diffuse soft tissue swelling”. This orthopaedic then referred me to a vascular surgeon who was completely useless and blamed my hormones (!) Yes, hard to believe but true: he said my very swollen left foot could be related to my hormones as I am peri-menopausal.

Is there anything a male doctor isn’t prepared to put down to menopause?

As my foot hasn’t improved, I went to see a Manual Lymphatic Drainage therapist who specialises in lymphedema for an opinion. She is convinced I have primary lymphedema and believes I should have a lymphoscintigraphy test done to confirm this and get an idea of the extent of the problem.

Where to go from here? My GP really is completely unhelpful and extracting a referral out of him requires a battle. He will claim I have already been seen by a vascular surgeon who found nothing wrong with me (other than the peri-menopause). Does anyone know whether a GP can refer directly to a lymphoscintigraphy test, or does this have to come from a specialist?

I’m contemplating the option of writing to the vascular surgeon who saw me, explain I have found no science to back up the theory about how the menopause could result in one swollen foot, mention a therapist who specialises in this area believes I have lymphedema and ask him to please organise a referral… but I don´t know whether this would work as Drs don´t tend to like patients who disagree… Has anyone had experience of a similar situation, a vascular surgeon not recognising lymphedema?

If anyone has any ideas about the right path to be referred to a lymphoscintigraphy I would be grateful for advice. When I try to google things out there, I am finding that most of the information and services available tends to focus on secondary lymphedema related to other conditions, not so much about primary lymphedema.

8 Replies

  • doctors are pains sometimes, but if the therapist thinks it is primary than it is probably primary in the tarda form that occurs spontaneously after the age of 35. you may have to find a new doctor. i was diagnosed in australia when a child with the gp referring to paediatrician after no answers and then referred onto childrens hospital where by a process of elimination and tests was diagnosed. i'm not sure where you are or who can refer for what in which country but it is entirely possible that you could have primary and maybe the therapist could point you in a better direction. good luck.

  • It may be worth seeing if your GP can refer you to a Lymphoedema Clinic. Tell your GP about what the therapist told you. The Lymphoedema Clinic can assess you and let you know if you do have lymphoedema and what type you may have. They can then advise what tests may/may not be needed to fully confirm their findings. If they think you need the lymphoscintigraphy test, they can write to your GP for a referral (some Clinics can directly refer you). Have a look on this link for your nearest clinic and print it out and stick it under your GP's nose :)

    Good luck!

  • Try finding a Lympheodema clinic in your area - they should be able to diagnose or if not at least supply some support for you and point you In the right direction

  • If you have not already done so I think it would be helpful if you contacted the Lymphoedema Support Network, They have a telephone helpline as well as a website.

  • The lymphoscitigraphy scan will probably confirm that you have a drainage problem, but the swelling is telling you that, it would be better to get referred to a lymphoedema clinic or nurse, who will be able to properly diagnose if you have lymphoedema. Find one in your area, contact them and see if they are willing to see you, then with that then go and see your GP and ask that they specifically refer you there. In my experience if a GP can't deal with you in the 15 minute consultation time, it gets put in the too difficult box. Do the effort for them and they are more willing to help.

    Lymphoedema responds to compression, so a little test you can do which may indicate lymphoedema is to press fairly firmly on the swollen area with your finger for about 5 seconds, it should leave an indentation which over the next minute or so should return to normal.

    Hope it helps and good luck

  • You are entitled to a second opinion from a GP and a specialist. We pay these people to do their job. There have always been lazy and bad doctors as well as the dedicated, marvellous ones.

  • Go back to you GP and insist that you get a referral for the scan or see another GP in the practice. I know of a young girl who was mis-diagnosed by the first vascular surgeon she saw. There is such ignorance out there about lymphoedema; especially primary lymphoedema, so you really have to push to see the right people. I have no idea where you are living in the UK but as previously recommended the LSN website is very informative as is Come back to this site if you are still struggling as I am sure you will find lots more help. The important thing is to get early diagnosis/treatment and management. NNE

  • Go bk to your GP inform him you hv had MLD and the therapist has identified your condition, as she treats this in her line of work. Be prepared with a lymph consultants name and ask for a referal. Most consultants lists are quite long in waiting times, but worth the wait. Dont waste time running around getting scans go straight to the man who can rule out or confirm your MLD nurses diagnosis. They are worth a million dollars. Good luck

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