Someone please help need to know if its lupus cant take it anymore

[malloryann11]

Hi all this is my first time writing on here. I'm a 20 year old female with health problems for a few years now. I'm kind of feeling like giving up like no one is listening. First let me start out by saying ive been sick since a very young age major surgery at 3 months to correct severe acid reflux and hernia. As a child chronic ear infections, strep, severe asthma attacks. As I hit my preteen years i had no more sickness was fine for a few years then the joint swelling started, the hives just from hot water this strange sensation in my legs that felt like my legs were extremely hot even though they werent burning hot to touch like they felt on the inside. I would have to get ice packs or cold rags to make them feel better. My hands and feet were always ice cold even if my legs were hot or my body felt perfect. Then my doctor decided at about 14 to run some tests. I came back with a positive ANA. He sent me to a children's rheumy because in his 40 years of being a doctor he was 99.9% sure i had lupus. The rheumy said to give it more time she couldn't diagnose me with such small amounts of symptoms. Then at 16 i became pregnant and couldn't see a children's doctor any longer. Once my child was born a couple months after things got much much worse. I began to have severe joint swelling, joint pain, bladder or kidney infections, went to eye doctor after two weeks of feeling like something was in my eye just to find out it was just inflammation, blood in my urine even when i dont have a bladder/kidney infection. Im struggling with migraines and im treated for depression have been for 3 years as well as anxiety. I had my tonsils removed a few months ago due to them constantly being so swollen without an infection in between the times id get tonsillitis. Ive had tons of blood in my stools so bad ive already had a colonoscopy. They found inflammation in my bowels and no reason for it. My doctor ran the same ANA test about two years ago and found that my ana number was (higher or more speckled whatever the exact word is?). basically she said yes you definitely have something going on im going to refer you to a rheumy. i lost my insurance until recently. i just feel like im at a complete loss. i have an appointment set for a rheumy. but i feel like its going to be the same thing all over again, i feel like my symptoms and inflammation test and ana test are being ignored once i get to the specialist. i dont know what to do. Does anyone else have any symptoms like this and have lupus? im sick of being tired constantly im sick of being in pain. im 20 years old my body shouldnt feel this way. i feel like its going to be like this forever and my symptoms will never be serious enough to any doctor and i just keep getting worse. If anyone out there has advice or these symtoms and has lupus or had went through this before being diagnoses please let me know. need advice suggestions anything...

[Atibrat]

Hi Mallory,

I understand how frustrating it is and maybe I can help a little with my story. I was sick for 3 years with symptoms of muscles aches, fatigue that felt more like my body turned to wet sand. Actually a heavy feeling when I get tired. I did not get an ANA test until I broke out with a bad rash on a cruise ship and had been laying out by the pool for a few days.

I was diagnosed with Connective Tissue Disease and put on plaquinel and given steroid shots. My ANA titer was 1280 and a speckled pattern also. I was diagnosed 8 years ago. My rheumatologist told me he felt I had lupus but would not call it Lupus unless it effected an organ. I now get a butterfly rash and more symptoms specific to Lupus but I have a few symptoms that go with other auto immune diseases also. If your Rheumatologist puts you on medication and gives you a diagnosis of Unspecified Connective Tissue Disease do not be upset because they do not give you an exact diagnosis of Lupus. Lupus is an auto immune disease that is a Connective Tissue Disease and sometimes if your blood work and symptoms are mild enough you do not need medication they may just want to watch and see how it develops.

If you have an auto immune disease it will show itself and most auto immune diseases are treated with the same medication. As long as the doctor is following you, they are taking it serious. I still come up with new symptoms 8 years later and I realize that these diseases are often slow at showing themselves and it isn't a disease that has a cure. I still do the same thing 8 years later as I did back then. I follow up with my doctor every 4 to 6 months, get blood and urine tests, take plaquinel and have to get on steroids when I start getting a flare up that the plaquinel does not control.

It sounds like you have a form of auto immune disease and hopefully you will get a good doctor who will follow you and put you on medication if you need it. I hope this makes you understand that an actual diagnosis of Lupus is not always easy because many auto immune diseases have similar symptoms and there are many types.

In the beginning I wanted to know if it was Lupus or not... Now I know it is some form of overlapping auto immune diseases but still not specific enough to determine exactly which ones.

[Wendy39]

Hello. And welcome. You have found a good site to come to for help, support and advice. Of course we aren't medically trained, but hopefully by sharing our experience we can help each other and stop us all feeling so alone and misunderstood. It sounds like your health issues have been going on for too long with no proper answers or explanation. Can I just ask, where do you live? What hospital are you under? Do you see a Rheumy or Dermy etc etc? (Don't mention doctors names - refer to as Dr K or Dr T etc, as we aren't permitted to name bad doctors). But it would help me be able to give a fuller response if I knew these details. Hopefully Lupus UK will be able to advise you further. In the meantime check out their website as they can tell you where their Centres of Excellence are. It sounds like you really need a lupus expert and not just another general rheumy. The average lupus diagnosis does take 7 years and some people are much much longer. With hindsight my lupus was triggered by the birth of my 3rd child in 2008, but I had warning signs for much longer, I was then wrongly diagnosed with SCLE in 2013 and finally got my correct diagnosis of SLE in April 2017. I ended up going to London Bridge Lupus Centre and paying privately for a 2nd opinion. So it took me over 8 years to get my correct diagnosis. It is a bug bear for us all that we have this chronic, life changing illness and struggle day to day but have to be so pro-active to get the correct doctors & treatment. But it sounds like you are a fighter and are ready to push this forward. I look forward to hearing from you further. Best wishes. Wendy

[Lilrosie1]

I have been diagnosed for two years but I believe I had it longer I get lesions on my neck it feels like wire loop drives me crazy. I always have flares in my hands and arms numb throwing up for hours at a time almost everyday your not alone trust me and when I say it is driving me crazy I really mean it. I think about suicide but I'm stronger at least I tell myself that. I get all kinds of weird symptoms now I'm pissing blood a lot and I have a benign mass in my kidney it's crazy but all I can say is hang in there. Not by your own strength but by God's

[Chanpreet_Walia LUPUS UK]

Hi Malloryann11,

Welcome to the LUPUS UK HealthUnlocked Community!

I am sorry to hear you are having difficulty in getting a diagnosis. There are specific tests that are performed in order to get a diagnosis for lupus; these tests are discussed in our free information pack. To download this pack click here: lupusuk.org.uk/request-info....

Using an online sociable forum such as this one gives you the opportunity to connect with other people who have lupus and can help relieve the worries you may have by hearing other peoples’ experiences.

We published a blog article on pain management which contains helpful tips and information that you can read here: lupusuk.org.uk/pain-managem...

Good luck for your upcoming appointment, please let us know how you get on.

[johare]

Hi, I'm sorry to hear that you have had such a rough ride so early. I presume that you are in the States. As I am in England I can only advise as to how a diagnosis is made generally and not how you can move forward in another country.

Positive ANA isn't only used for Lupus but other connective tissue conditions as well. There is a general set of criteria for a Lupus diagnosis ; four or more must be present to make a diagnosis.

The “Eleven are”

Malar rash: across cheeks and nose

Discoid (skin) rash:

Photosensitivity: skin rash as reaction to sunlight

Mouth or nose ulcers:

Arthritis (nonerosive).( the bones around joints don’t get destroyed).

Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)

Neurologic disorder: seizures and/or psychosis

Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine

Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count

Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin. Sorry its so long. I believe you may have walk in clinics, can you present with your facts from this list. It could be another auto immune condition that equally needs treatment.

All the best.

[1sam]

So sorry to hear about your problems, I can relate to your situation and that is why I can tell you to just don't give up on Drs yet. They will find what disease you have.

My own experience is that very few care about joint pain but bloody urine can make them think and pursue a diagnosis. Just keep pushing and be yoir best advocate. Rheumatologists and nephrologists could be your best choice to start. Good luck!

[Curly1430]

Hi I can feel your pain I was in same position as you I thought I was going mad the pain in my legs I would say felt like sunburn but on inside and hand like when u get frostbite constantly getting urine infc blood in both this and stools after nine years of going back and fro in end they think it's behcets

I thought I was alone and done something really stupid if it wasn't for ambulance lady I would not be typing this so never ever think your alone and everyone on here I would say would always be there to talk if you ever get that low I would maybe say if not happy always ask if you can get second opinion it was a fresh pair of eyes that picked all my symptoms up take care