Help with possible lupus

[SamanthaG96]

Hi I'm wondering if any one can help or relate to my story. In June 2018 I ended up in hospital where I was told I had severe pneumonia. A week after being in hospital I was then told I had numerous blood clots on my lungs. Also whilst in hospital I got a rash on my chest, back and legs. When being discharged I was told they had concerns because I had very raised eosinophils and when they looked back this had shown in a blood test I had in 2014 and had never been flagged. After being discharged I was referred to a hemotoligist where I was confirmed to have factor v leiden. They were also very concerned I had leukemia so I had a bone marrow biopsy which came back clear. I was then tested for numerous parasites one of which was schistosoma (blood flukes) which came back positive but I was told this had been a false positive. I was then tested for some auto immune diseases but unfortunately I can't remember which ones but they all came back negative. I know for sure one was rheumatoid arthritis. During this period of time of having all these tests they then found out my lung had collapsed too. After this they didn't seem to really know what to do with me so have been seeing my hematologist every 6 months to be checked in on. My bloods come back with still high eosinophils and Ige every time they are done. Anyway the reason I've joined this group is cause I'm now wondering if it could be lupus. Ever since I had pneumonia I have not been a healthy person. Main symptoms I suffer with are extreme fatigue, aching joints and all over body pain. Mainly my back that is affected. I get ill alot or regularly feel like I'm coming down with something. A lot of the time as often as every other week. Swollen glands in my neck very regular. Also get swollen lymph nodes in my under arms. Shortness of breath and chest pain. A few times this has been so bad where I have actually gone back to hospital and they have tested me for pulmonary embolism because the pain feels similar to when I had blood clots in 2018. I get unexplained rashes sometimes that just go on their own and often also get red patches that flare up mainly on my neck and chest. Also recently been suffering with mouth sores. I'm so sorry for the long post I just feel lost and I'm starting to think this is all in my head and the worrying is making me ill. Can anyone tell me if my symptoms are similar to what you have experienced and also is high eosinophils something that is related to lupus? My next hematologist appointment is the 23rd of December so would like to know a bit more so I can talk to him about my problems. I feel like doctors just look at my problems as individual ones and never all as a group.

[Oshgosh]

The last sentence on your post resonated with me.I had symptoms for years (at least 25 plus years.

Everything was treated on a symptom by symptom basis.

N 2017 my asthma was getting worse I thought.i was eventually sent for X-ray and referred to a general consultant.

In 2018 was admitted to hospital,they said pneumonia,kept me 2 days, discharged on antibiotics.

Still waiting for appointment.

N November,has become Increaingly short of breath.

Ended up goi g into resus - terrified.

Stayed in 11 days.

Referred to Wythenshawe hospital. Interstitial lung dept.

Was referred to rheumatologist as well as ILD consultant.

Over March to June,they told me I’d got lupus,rheumatoid athritis ,along with the lung condition.

They then told me I had Sjogrens,which explains thedryeyes and constant thirst.

I also discovered in the discharge letter that I had eisophinilic pneumonia ( don’t know about the spelling.

Looking back I wasn’t well forages.

Iwasalways tired.needed more sleep/ rest than others.

Kept feeling under the weather. Do you think you could ask to be referred to a rheumatologist? You need To make a list of your symptoms . I’m sorry I can’t help any more.let me know how you get on.

[eekt]

Samantha so sad to hear what you've been through, it's a big problem doctors, looking at symptoms one by one, because it just doesn't cut the mustard when it comes to systemic autoimmunity...check out the info on Lupus UK website about getting a diagnosis...ask for your medical records, all the blood tests...ask your GP to do the ANA test (even of done before), it can change, it can positive in healthy people, it can be negative in autoimmunity, but if it is positive, other tests are done and some are specific for certain things like lupus...be informed, be proactive, be well xxx

[KayHimm]

Samantha -

I would be surprised if, with your symptoms, you have not had a major work up, including tests for all autoimmune disease. It is good you are being closed followed by a hematologist. It is completely reasonable to ask if they think you may have lupus.

I think you can be reassured that your doctors are trying to fit the picture together, particularly because of the seriousness of your symptoms.

Sometimes diagnosis can take a while when blood tests are not cooperating. You might want to ask if any of your tests for autoimmunity have been positive.

Please let us know how you make out.

K

[Caj64]

Hi Samantha I have exact symptoms..I have been so ill..I was taken to hospital recently with suspected stroke but they believe it was a very bad migraine....I felt like cold water was being poured down my ear and affected my left side could not speak properly and lost feeling in left side...tinnitus really bad and have pain all over plus back pain. Also think I have another water infection. I am not able to sleep very much so exhausted. I am waiting for the results of my blood tests and they are sending me for an mri scan. I have also had to reach out to have counselling as just cannot cope with being so ill all the time...I hope you have good support..this site is a comfort as so many of us are suffering...take care xx

[Verdant16 in reply to Caj64]

It took me 5 years to get my lupus (SLE) diagnosis because my neurologist focused on my severe migraines and just assumed my joint pain, fatigue, sensitivity to the sun/ heat, etc wasn’t related. I found out after diagnosis that the blood vessels in my brain squeezed due to the inflammation caused by lupus (vasculitis). My bloodwork shows positive ANA, high EOS(sedimentation rate), liver enzymes, RBC, platelet count, and WBC. The last 3 tend to be low in people with lupus, but my rheumatologist said mine are high due to inflammation. Hope everyone one here finds the correct diagnosis.

[Redfox25]

Hi Samantha. Your problems sound similar to mine before I was diagnosed and treated. I had pneumonia, I also have neck and chest rash but rarely the typical facial rash. Ask eekt said, ask for ANA screen (antinuclear antibody) also called ENA or CTD (connective tissue disease) screen. Good luck.