Where is help in US that doesn't take months to get?

[DanaL13]

Where can I get help in the US? I'm in North Carolina.. I'm not being treated for Lupus symptoms at the moment and getting a rheumatology referral has been a let down to say the least. I have had the skin problems, Raynauds, weight loss, eye problems, pain and fatigue for 30+ years. It was documented in records that have been destroyed supposedly by my former healthcare provider since childhood. I have a visible rash now, have lost 10 lbs again in less than 2 weeks, have Raynauds , etc. all visibly present and I can't get any help.. I'm not exaggerating when I say this. I have APS and narcolepsy on top of this and as a single mother with a 15 year old exhibiting the same symptoms I had at his age, We need some help.

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

If you are not being treated for lupus, I am sorry but I can only suggest you see your Primary Care Physician. The other option is to contact the Lupus Foundation of America and find their nearest Chapter: lupus.org

I realise my response may not be very helpful or supportive, as you are obviously distressed. Please see your doctor and to get some kind of diagnosis should be the aim. Your symptoms may not be lupus related; and you don't say why you think you have SLE.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

Please use the following to complete the Date of Birth entry: nn-nn-nnnn where n=number. Thus, if your birthday is 5th May 1968, enter: 05-05-1968. Use the “-“ separator and not the “/“.

Finally, please go to: lupus-support.org/ and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[DanaL13 in reply to lupus-support1]

Thank you for the reply. I have talked to my health care provider, she agrees that I need to see a specialist considering I have had this most of my life. My former primary healthcare provider never properly diagnosed it nor narcolepsy nor APS until catastrophic effects of each hospitalized me..I changed my primary care doctor as a result but my new primary provider is only a referencing provider so when I am referred to specialists , I have to wait up to 3-6 months for insurance to approve visits. My former doctors office claims my old records were destroyed so I'm told by new doctors they have little to nothing to reference.. the visible physical signs are present but patient history in medical records don't state anything for reference or supposedly can't be found. I saw a rheumatologist that's advice was to see if I could be a case study at a University somewhere.. My referral for Duke rheumatology was denied by my insurance despite not being treatedly presently for my conditions because no physician knows what to do without past medical history to reference.. I'm still waiting on a hematology appointment that's in September despite medication intolerance to prior anticoags and needing something now for the treatment of APS that resulted in a 10 in blood clot in my arm and pulmonary embolism in my left lung in 2013! I am frustrated to say the least and so is my new provider who can only refer me to specialists because she does not have the medical expertise to address them independently. I understand her frustration and she understands mine but what do you do when no one else understands the urgency of this situation?

[lupus-support1 Administrator in reply to DanaL13]

This is a shocking story! Contact the Lupus Foundation of America and tell them your story.

Other than that, I don't know what to advise. What about your Congressional representative?

You are welcome to talk to me but I don't have any helpful knowledge for you.

With good wishes,

Ros