Lupus patient suffering weird neurological symptoms

hi jessica. ive been having weird symptoms too. I have no clue if i have lupus but its been something ive been looking in to just because all the sites ive read up on sound so similar to what im feeling. I am only 20 years old and maybe you could give me some help. For about a year now ive just felt kinda run down and really sleepy alot but for the past 2 months it has been soooo bad! I am constantly tired and sleep just does not refresh me in any way which really worries me( the tiredness has just gotten worse). I feel nauseated all the time and run a very mild fever sometimes. my neck hurts alot too and its stiff. Its so hard for me to get out of bed and even get dressed because i feel so dizzy! I feel almost delerious like i havent slept in weeks!I have headaches also. Worst part is i dont have insurance so i paid out of pocket to get a couple blood tests but they did not test for lupus. Its depressing and i know your frustration about people not understanding. I tried telling doctors my symptoms and hey completely over look them like its nothing but like you said... I know my body and i know something isnt right. People dont just feel like this for no reason and with adequate sleep i shouldnt feel so tired and dizzy! Im not sure if these symptoms could be lupus or if maybe it is something else but it really scares me.:( if you could give me some advice id really appreciate it! btw i hope you feel better and im sorry i couldnt answer your questions as i am confused myself! thank you!

Hi Ashley,

 

I know how frustrating it is being sick with no insurance- when I was first diagnosed, I was taken to the E.R. multiple times in one week, and racked up a bill of over 15 grand. I got insurance after that through work, but they wouldn't run any scans on me in the beginning because I couldn't pay, and I wasn't in life threatening danger. The only reason I found out I had lupus was because I developed colitis (inflammation of the colon) which is VERY strange for a 21 year old to get. The colitis came out of nowhere, as did my lupus.

The only way you can tell you have an auto immune disease is through a blood testing for ANA levels. There are many different auto immune diseases, and lupus can often be difficult to diagnose, because it has SO many different symptoms that can come along with it. Lupus can literally affect any part of your body. For me, my biggest symptoms are dizziness, momentary confusion, fatigue, and light nausea, but I have many other minor symptoms, such as joint pain, muscle spasms, heart palpitations, increased headaches and chest tension. If you go to the doctor complaining of these wide variety of symptoms, they will often not know what to tell you.

 

So you have gotten your blood tests back- and your thyroid is fine, you're not anemic, and your blood pressure isn't low? I've JUST found out that I have low blood pressure, and accompanied with the anxiety I feel towards my condition, my doctors say it's quite possible that it could be contributing to my dis-orientation. I just purchased an electrical blood pressure monitor to see where I am at throughout the day, and to see m BP level when I have these episodes. Sadly with your doctors, YOU have to try and control your visits. It is hard, because they can be so dismissive, but next time you are there, DEMAND that they check you ANA levels (and if they haven't checked your thyroid, that is good to check as well). This will give you something to go off of.

Are any of your family members sick? My mom has lupus as well, but it took her doctors over 20 years to diagnose her correctly, because they always told her it was in her head, and that she was fine, because her ANAs kept fluctuating. I was lucky in the regard that they were at least able to tell me what was wrong initially- I know not knowing is a HUGE part in all this. So yeah, I would recommend getting all blood work done first. Then, if nothing shows up, I would pester your doctor to write you a note to get an MRI or EEG done. (I know that it is expensive, I just dropped $250.00 on an MRI the other day, but that was the cost without insurance. ) They may try to dissuade you at first, because you're so young and thus you must be healthy, but if you really let them know how upset you are, they should write you a note. If not, then it is probably time to find a new primary care physician. When in doubt, drink lots of water, stay off your feet, and trust your instincts! Hope any of this helps, I know it was quite long. I'm always here to talk if you'd like!  :-) -Jess

Oh I forgot to ask! Do you have a butterfly rash on your face? It usually spans across your cheeks and the bridge of your nose. My mom doesn't have one, but she does have a rash on her chest. That is a tell tale sign of lupus. Also, people with lupus are advised not to go into the sun too much, because that is how a flare up can occur. It exacerbates any symptoms and can make you feel sick (they even advise to stay away from spicy foods!)

So yeah, any rashes? (When I say rash, I mean redness of the skin that WOULDN'T be itchy, it would just look like a light sunburn.)

Hi jessica, Thank you for your advice i really appreciate it! And to my knowledge nobody in my family has lupus that im aware of and sunlight doesn't bother me any. And mycheeks are rosy but its not raised or anything and not rashy just looks rosy. My blood pressure was low when i went to the doctor. Could u explain how the joint pain feels because i feel weak and achy but not extreme pain or anything. My biggest fear is that ill end up having this and suddenly die or something:( its scary to me. I just want to feel better

Well the rash wouldn't be raised. It's flush with your skin, and just looks rosy- but more rosy than most other people's skin would be.

 

My joint pain isn't as bad as a lot of lupus patients. It is achy, and they are more sensitive to cold now. My mom (who also has lupus) has very severe joint pain that the doctors thought was arthritis for many years. She has issues working in her garden and other things, as they hurt her, not to mention easily tire her out. But my mom had lupus for 25 years before they diagnosed her, so she wasn't getting the care she could have until much later.

 

Having lupus, or any health issue, isn't ideal. But, if they do happen to diagnose you with an AI disease, know that it's not the worst thing that can happen. Detection early on really helps out in the long run. The majority of people who have lupus live long, normal life spans. There are times that you could even go into remission for a few years. Someways I feel very fatigued and annoyed at my illness, but there are a lot of days that I forget I even have the disease. 

 

So please do not worry about dying from lupus. When it is diagnosed early you really have a much better chance of feeling better in the long run, and there is a lot you can do to work with your doctors to make yourself feel much better, and to make sure you live a long, normal life. Lupus is definitely not a death sentence!

 

But before you go worrying about a disease you may or may not have, you should get yourself checked, that way you can stop wondering; I'm sure it'd give you a little peace of mind!

Im gonna try and find a clinic to do some tests considering my old physician wont see me without insurance. Feeling sick puts alot of stress which i know makes things worse.