View Full Version : Young and scared . . .

06-11-2007, 08:52 AM
Hi all--I'm WAY new at this, so please be patient with me. :oops:

Over the past several months (about eight now) I've had some pretty alarming symptoms . . . swollen lymph nodes, near-constant fatigue, depression (I was recently put on Prozac for it), joint pain (off and on daily), nausea, chest pain. I've got asthma, severe allergies, GERD, and an arryhthmia that I'm not on medication for; I've had those for a long time. The thing is, my symptoms are getting worse; now I'm having muscle twitches, these odd fevers that come only at night and go within a few hours of me waking, difficulty breathing, etc. I've also run a low body temperature for about two or three years now; in fact, at one point I became hypothermic while in a perfectly normal temperature setting!

I talked to my doctor about all this . . . we previously thought it was mono, but the mono hasn't dissipated for eight months now, and it's accompanied by other symptoms that are really scary. So we've dropped the likelihood of mono (since I was only diagnosed on my symptoms, and not on a lab test). Now my doctor is talking about autoimmune disorders such as rheumatoid arthritis, etc. The thing is, I'm scared that it might be Lupus, even though I don't have the discoid rash.

I'm going in to see another doctor about this on Wednesday, but the thing is, my husband and I have no money, no insurance, not even a car. I can't work as per doctor's orders, and my husband only has a job at McDonald's for the time being. We're not in danger of being homeless or anything anytime soon, but we definitely don't have the money for all the tests and such that are likely to come with trying to rule out different disorders! :( :( I'm only 19, so disability is almost certainly not forthcoming. And I feel so powerless and scared; I don't know what to do. I want to believe that I'm overreacting, but a small part of me keeps whispering that I could have Lupus. Please, somebody talk to me . . . I'm scared out of my wits.

06-11-2007, 10:20 AM
Good Morning,
Are you in CA? California has MediCal, which would cover most (if not all) of your costs. Talk to your local hospital about it--I used to work at a hospital here and we had people that signed patients up "there and then".
If your husband works full time, doesn't his employer have to provide some sort of insurance?
As far as your symptoms go, you could be looking at various things. Discoid sores don't neccessarily come with Lupus, though... nor the butterfly rash (I only get that once-in-a-blue-moon.)
You need to see a rheumatologist. Yes, the blood tests are expensive, but they are required. Pay 5 dollars a month if you have to... just make arrangements. Labs/hospitals/doctors do it all the time.
I wish I could help you more...

06-13-2007, 07:12 AM
Thank you for replying, chichibug. Unfortunately no; I'm not in CA, I'm in Arkansas. The medical system here is variable--sometimes (as in the case with the medical services at my university) it's really great and couldn't be more helpful. Sometimes, though (actually, I might say the majority of the time), it's really not that great. For example, I was diagnosed with an arryhthmia a few years ago, but the doctor didn't tell me which kind or how to handle it along with my asthma (because I'm supposed to stay away from stimulants, but my rescue inhaler is a stimulant, and a powerful one at that :roll:). I'm supposed to see another doctor today to supplement my current doctor's opinion; I'll be asking him how to get some kind of bloodwork done without it breaking the bank.

I also talked to my husband about insurance offered through McDonalds, and we looked at a brochure they gave him. And while it's better than nothing, it's designed for (quote) "everyday medical expenses associated with sickness and accidents." We're still going to ask about it, but we're not sure. However, I called my doctor the other day to confirm my appointment and she reassured me that we'd be talking about ways for me to pay for any tests I might need, so . . . PHEW! :P

Thanks again, so much, for talking to me. It helped to have something to research and sort of get my mind off of all of this for a while. So, thank you.

One more thing; I found out recently (about a day ago) that scleroderma (another autoimmune disease) runs in my family. Or rather, I knew that scleroderma ran in my family; but I didn't know that it was an autoimmune disease until a day ago. Does anybody know if scleroderma is linked to lupus and/or if it's possible to have scleroderma without skin manifestations, etc.? Any info or links would be very much appreciated.

06-13-2007, 08:57 AM
I too am new to this and it is very scary. I just wanted to show you some support and let you know that I will keep you in my prayers. Its good to have others to talk to in times like this. :D

06-13-2007, 10:38 AM
I'm glad you have good (relatively) with the University. My daughters go to a California State University and they have GREAT coverage--all the way to teeth whitening and massage therapy. I wish my private insurance covered that. ;)
I have electrophysiological problems (arrythmias) too. I have atypical sinus tachycardia and everyday occurrances of PVC's, bigiminy, trigiminy, etc. My heart rate would be hanging at 265 and then drop to 45 or 50 suddenly... I'd be on the floor... Funny thing is, I never noticed the 265 much, but that drop. Oy! And, like you, have had a history of asthma. I too had to juggle the inhaler and the meds.
I found that (for whatever reason) when I had the big bang doses of Prednisone, and started the plaquenil for the Lupus, my asthma went away. gone. like--never had another attack again. It's been 6 years since I've even used an inhaler.
So, hopefully, that will help.
My doctors had a hard time juggling the meds--and frankly, had to just settle for symptom therapy. Good thing is the inhalers are short-acting, so their effects are short... I also had the total nebulizer at home, and was doing breathing treatments daily--those lasted for hours. So, my heart meds were "upped" during those times of the day.
I take Cardizem for the rate problems. Now I have to take Proamatine for low blood pressure.
Certainly all autoimmune diseases are hand in hand, so scleroderma isn't out of the question. You should talk to your doc about it.
Keep us posted on your progress,

06-13-2007, 10:46 AM
One more thing:
Combining your University Insurance and the insurance from your husband's work might result in you having no copays or deductibles.
Check it out... When I had two insurances, it was awesome. Free everything.
(Well, "free" is relative--the insurance was expensive, but saved more than it cost...)

06-14-2007, 05:42 PM
Hi Fanficbug!

Welcome to the Forum! :D I'm really glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

I am SO sorry that you are going through such a hard time :cry:, but please know that you are in my thoughts and prayers...

Keep well! :)

Pretti in Pink
06-15-2007, 06:46 AM

welcome- you've joined a great cyber family. Although you are 19 yrs. old, you can still apply for SSI or SSD based on your disability, especially if your doctors have ordered you not to work. You should look into it. Also ck. into some type of state or county aid (if your state offers it). You may want to contact a social service office and just see what would be available for you.

I known many times the unknown is worse than the known but try not to upset yourself more with that which you have no control over. Do what you can as far as looking for resources and pray over the rest. That's all you can do. I wish you the best in your search and again welcome.

06-17-2007, 09:15 AM
Well, here is something of a sad update! :mad: I hope you guys don't mind, but I need to rant.

I went to see the doctor on Wednesday, and it turns out they asked me to come in on the day of a special promotional skin check, so I didn't get to see the doctor! In addition, my doctor/nurse is being extremely confusing about what she actually thinks. :? She has switched to saying that I shouldn't worry because mono does weird things to people, even though she was telling me that she didn't think it was mono before. :( I would be okay (actually happy) with a diagnosis of mono if she wasn't just using it to blow me off! I have had mono for over eight months now without any improvement in symptoms, and everything I have ever read on the subject strongly urges those who have had mono for more than six months to start getting another opinion.

To make things worse, I went out in the sun without very much protection on for about five minutes on my way to the doctor's, and my arms started to turn red, itch, and burn and got these little bumps on them that are still there (though not as swollen/raised as they were before). They're only the size of pimples, but there's a lot of them. Not to mention, my face got really red and stayed that way for a few hours after I got out of the sun, even though I only stayed out in the sun for about five minutes, six at the most. That night I ran a fever, got a fever blister, was exhausted all day long, had an asthma attack and an arrythmia, and was up with horrible acid reflux for most of the night. Not to mention being terribly achy and wheezy! In the end my housemate made me put some aloe vera on my skin and that seemed to help a little bit with the redness and definitely with the burning, but the itchiness stayed and so did the bumps. And it took me a few days to recover from the extreme fatigue to get back to my 'usual' "sort of fatigued" self!

Everybody (well, besides my husband and housemates) keeps telling me, "Oh it's just a coincidence" or "mono does weird things to people and lasts a long time" but I'm really starting to worry that with the family history of scleroderma there could really be something wrong with me. :(

Long story short, I went to the doctor and got messed up because of it, and am not happy right now. We also never discussed insurance and the like, which makes me sad. :( I'm supposed to go see the doctor that I was supposed to see this Wednesday (again). So, keep your fingers crossed if you could!

06-17-2007, 09:23 AM
Also, sorry I'm not posting very much in other topics. :oops: I feel like I don't have a right to until I know that it's Lupus or some other autoimmune disease. Is that silly?

06-17-2007, 04:15 PM
Hi Fanficbug!

I'm SO sorry to hear about your diagnosis problems :cry:, but I understand because my doctors haven't decided quite what's wrong with me either! They just know that I have some type of auto-immune disease, but which one(s) (apart from Sjogren's Syndrome, which I definitely have), they simply don't know! :(

I have Asthma too. With regard to the rash on your arms which you mention, it might be Photosensitive Dermatitis, which is something I suffer from. However, I think that a Dermatologist has to diagnose it. Check it out:


Fanficbug, you can post wherever you want to! Loads of people on this Forum have not been diagnosed with Lupus (including me), although it is a possibility for them, so PLEASE don't feel like you cannot post anywhere else!

Keep well! :)

06-23-2007, 12:12 AM
Hi I am 20 and new to this too. I am not yet diagnosed, but have also been getting the run around. I also had "mono" last year for a week and then went back to my usual self. I am so glad that I still do live with my parents because of college, and my father was in the military so my bills are manageable. When I called to find out test results, I talked to a nurse who explained that I tested positive and I was being referred to a specialist. When I saw my doctor this morning, she just told me the same thing and said she was 90% sure it was lupus. She never explained it. I was so mad. But I hope that all works out well for you and you can be diagnosed in a timely manner!