Am I crazy?

IrishGhost

Hello everyone, thank you in advance for any input or support!! I'm a 39 year old woman that has been dealing with illness most my life. I got really bad after have 2 children and I can not seem to get help! Lupus runs in my family big time, and I have 2 sisters and my neice along with my daughter that are having issues. I started to get bad at around 26 yrs old and nobody can tell me why!! I do have CareSource government insurance so I'm not sure if that has any bearing as to why no doctor will help me. I have soooo many symptoms and I'm just gonna list them...

All over hairloss, not patches
Partial focal seizures 
Night time seizures
Broken vessels all over the skin
Rash across cheeks and nose
Itchy horseshoe/C shape rash neck/chest
Mouth and nose sores
Peeling of skin in mouth
Allergic to light, especially the sun
Trouble remembering/concentration 
Extremely tired
Severe fatigue
Insomnia 
Nausea and vomiting
Unexplained fevers
Headaches
Digestive issues
Misdiagnosed with Crowns
Mitral valve prolapse with regurgitation 
Tricuspid regurgitation 
Kidneys constantly get engorged 
Trouble urinating most times
Trouble holding urine at times
Itchy rashes mostly waist up
Irregular periods
Thyroid swells with no thyroid disease 
Swelling in armpit at times
Severe vitamin B and D deficiency 
Anemic
Big toe nails just fall off
Blood splinters under nails
Raynauds phenomenon 
Double vision
Blurred vision
Seeing burst of sparkles in air
Uncontrollable blood pressure
Heart palpitations that are severe at times
Lung congestion/ hard to breathe at times
Dizziness, lightheadedness, vertigo
Sweating severely/unable to cool off
Severe joint pain almost everywhere 
Chest pain
Pain when breathing at times
Swelling of upper stomach right side
I hurt everywhere
Depression 
Anxiety 
Chronic sinusitis 
Very low sex drive

Those are just some off the top of my head. I've been to many many doctors and all but 1 of my lupus  tests all come out negative. I do show vitamin deficiency though. Right now I'm dealing with another chest rash that will not go away! I just saw a rheumatologist a month ago and he said according to the tests, I do not have lupus!!! Then why am I sooo sick with sooo many symptoms?! I don't know what to do, I feel so stuck, and alone!!! I can't even work because of all the issues but can't seem to get a diagnosis either for disability. I guess I'm just looking for opinions and support. Thank you so much for reading this!!! God bless...Jenn

kellicotti

Hi IrishGhost,

I am so sorry you're dealing with this! I do not have all of the symptoms you have, but I was in a position where I was very ill and suspected Lupus. I do  not have lupus, but I have what is called Undifferentiated connective tissue disease. All of my lupus tests were pretty much negative, too. I had a positive ANA with a nucleolar pattern and a low-normal Complement C4. Those, along with my clinical signs, gave me the diagnosis I have. I plan to see another specialist for another opinion to see if there is further testing that can be done. As of now, I have changed my diet (cut out gluten-which I swear was a crock-of-bull unless you had celiac disease... but cutting it out has helped dramatically, among other things) and I am getting acupuncture regularly. I am not on medications right now but may start them.

As someone in the medical field, I always thought alternative medicine was a bit of a stretch as far as efficacy goes. I am now eating my words!

I hope this helps!

mina

Hi Irishghost, sorry to hear you’re going through this. We can all empathize with the frustration of no diagnosis, to being misdiagnosed. It may seem a little ridiculous for me to mention, but I watched this USA based show called diagnosis live! Hosted by Ann Curry: https://www.statnews.com/2019/08/06/ann-curry-medical-mysteries-tv-show/. People seeking medical help for their mysterious conditions, from a panel of different doctors, and seems to have a great outcome for the patient. Also, the Second Opinion show from your public broadcasting (WETA). I hope this helps in some way, and you get heard. We hear you here for sure, keep your mind strong