Hi, I am still searching for a diagnosis after 5 years. I have been told possible Betchets, lupus, undifferentiated connective tissue disorder. I have a positive ANA, joint pain, scleritis in both eyes and ocular hypertension.
My concern is I have been feeling unwell with fever, night sweats and asked for bloods to be done. I am worried as I have an LDH of 761 and an elevated alkaline phosphatase. I cannot get in to see a Dr, so I am now concerned I have a blood cancer.
Does anyone know if autoimmune causes high LDH and high alkaline phosphatase?
I appreciate any help.
Kind Regards
Suzy
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Suzywhizzo
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I am just taking colcechine and vit d and c. I am concerned about lymphoma and other blood cancers. I am just so anxious, as you can’t get any help from the Drs. My GP doesn’t even know what a positive ANA is and just tells me to take up Yoga, which just infuriates me, as I havnt got the energy to get up some days.
Thank you for your reply, I really appreciate someone reading my post. In this current covid environment, I think many people just feel so alone.
Morning. I know the thought is exhausting but can you change GP practice? I stayed with my gp for years and was told nothing was wrong. I eventually did and am so glad as I had a completely different response. Can you ask for a phone consultation from your rheumatologist?
Hi Saltrock, yes I’ve requested a call from the rheumatologist and they said they will let him know. With regards to the GP, I used to have a wonderful Doctor at a different surgery, but when I moved 5 miles down the Rd, I changed counsels, so I had to change drs. I live in a village, so I am in the only one close to us. I begged to stay at the other surgery, but they sent me the catchment map and said I would have to change.
Thank you again for replying and I hope you are staying well.
Sorry you are suffering. Sounds like you need experienced physician. I was diagnosed in 2002. I see the best docs in the United States. You need rheumatologist who can give you remicade or rituxan infusions in office. Also find a retina specialist who can give you steroid injections in your eyes.
I will write what I tell most people that you consult doctors in Turkey, Dr. Ahmet Gul, Dr. Umit Tursen, and Dr. Gulsen Akman Demir Behcets Specialists in Neurology brainstem, she evaluated my son, if there is anyone know what you have and what you don't have ruling out Behcets, it is these doctors, HLAB51+ test you can do for sure, that will bring you 99% diagnosed with Behcets sooner, I too have slightly + ANA, titer 1:80, and I do have somewhat similar issues like you, I too think I am now developing Lupus but they do not see it, and that similar ulcers in mouth, angular chelitis, my son had these ulcers in moutch with Behcets...there s something similar between him and myself as his natural mother/genetics, pleaese focus on one thing at time, now ask your doctors or health care to set up HLAB51 Gene Test related to Behcets, one of many genes known to trigger behcets, I am too frustrated, that my Rheumatologist does not take it too seriously my mild ANA 1:80 positivity, my son had Behcets, and he had Negative ANA test, Negative for Lupus, I too do not have the Anti-Ro, and Anti-La antibodies, but Lupus can be with our without ANA, so your doctors have to diagnose you based on your symptoms and clues in your blood work, the ENA panel..first they establish ANA anti Nuclear Antibodies, pos or neg, then they extract the Extractable Nuclear Antibodies to see what kind you have....only your doctors can help in this, and second to the testing of HLAB51, please look up these doctors I mentioned, and phone them and see how you can see/communicate with them, if you in UK, it is easy than other countries to visit their clinics....this would be the last stop for sure diagnosis in Behcets, as they are "Royalty" in this disease.....
These doctors are members of the international behcets society, Prof. Ahmet Gul, is chief Behcets Specialist in the world, the Cerraphsa Medical University in Istanbul, where Dr Behcets, Hulusi was originally from discovered behcets, they hold weekly clinics there...Behcets in Turkey is very much a common knowledge to PHysician as compare to the rest of the world....that is where the disease began...they will know your condition...once for all rather than wondering and wishing....
I was diagnosed by Dr yazici. I see his son dr Yusuf yazici @ nyu langone every 6 months. I have a wonderful local rheum & ophth & gi docs. Skin pathergy test still best diagnostic test. I am noticing UK socialized medicine is not best for BD patients. Rheumatologist usually your " ring leader" in treatments. Infusions of remicade or rituxan will improve your quality of life
What helped me in moments of uncertainty was to keep a health journal. Tracking every symptom, hospital visits, possible diagnosis, rare moments. And one day I found a doctor who todo the time to read it. And he said.. you have Bechet! 2 years passes since the first page ... but worth it!
Yes I have a lot of notes and I totally agree you have to be lucky that someone takes the time to read it. I am really glad you have been lucky in your diagnosis.
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