Hello, I'm new to this way of seeking help from others. I've been diagnosed with Narcolepsy. I had some unexplained antibodies in my blood. I went to an infectious disease doctor and was able to rule out infectious diseases. He seen that I had high Igg levels and sent me to a rheumatologist. At this point I had been through so many tests and so unsure of my future. Relieved I didn't have an infectious disease I went to the next doctor. They said that they were unsure what was going on. Apparently I didn't have all the symptoms for a true diagnosis of lupus. I was in the process of moving from Ohio to Florida and was going to pick up where I left off in Florida. The Ohio doctor told me to keep an eye on over all situation. If I have a miscarriage, I most likely have lupus. Well, that has always been in the back of my head. I'm on unemployment and don't have health insurance to go to a rheumatologist. I know that with lupus there are rashes. I've never had rashes, but strange allergic reactions/allergies. Over the last months or so I have this strange hand rash? I'm not sure if you want to call it a rash.
I guess what I'm trying to get at....is there a link between Lupus and Narcolepsy? I wouldn't think Lupus if the doctor didn't mention it.
This "rash" doesn't really itch, hurt, no puss, and I have 2 new little bumps that just came up. I think it's stress related.
Any guidance is appreciated!!
Thank you!!
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Hi Looking4help,
I am so sorry that I did not answered you sooner! I have been off of all narcolepsy medications and have been in a "fog".
There is no specific link between narcolepsy and lupus, however both of these chronic conditions are autoimmune diseases. It is not uncommon for a person to have multiple autoimmune diseases. With that being said, I do know of 7 other people who I have spoken with that have both lupus and narcolepsy. I also belong to several facebook narcolepsy groups and can tell you that there are a great number of narcolepsy patients with other autoimmune illnesses and many more who are experiencing symptoms similar and are not finding clear cut answers within their blood work.
The rash that you posted on your hand does not look like a lupus rash in my opinion. I believe that you are right and that it is most likely stress induced. Stress can reek havoc on the body like nothing else, unfortunately. It could exacerbate many symptoms of your narcolepsy and even bring on other health issues, including lupus.
Have you been able to get any answers yet? Also, if you don't mind, would you care to share your symptoms and strange allergies/reactions that you experience? For instance, do you have any joint pain, unexplained fevers, muscle aches/pains, or anything else out of the ordinary start occurring?
When you get a chance, please let me know how you are doing! I hope to hear back from you and again, I am so sorry that I did not reply sooner.
Thank you,
Melissa
Hello....I've been busy also. No worries.
I was living in a fog for many years. I brought this up to my doctor and had the sleep studies. I was diagnosed in 2008.
What started alot of my questions was when I was turned away from the Red Cross Blood drive about 6 or 7 years ago. I then received a generic letter stating that I tested false/positive for HTLV I and II. I blew it off for a while because I was going through other issues. I went to an Infectious Disease doctor in 2009 and I was told it was only antibodies that will always trigger a false/positive, but I will not be able to donate ever again. (which makes me very sad!!) He did see that I had high Igg levels and sent me to a rheumatologist. She didn't really do a whole lot of digging. (I was filled with such emotion at this point because I thought I had HIV, etc because of the western blot test that was given, etc.) She knew at that point I have been through alot of testing and basically said it will be a wild goose chase to find out whats going on. She said there was a possibility of Lupus, but told me to keep an eye on my body and any changes. To look for miscarriages, etc. At this point I was getting ready to move to Florida and said I would keep an eye on it.
Since I moved, I have been concerned, but haven't had the financial stability to go to various doctors. I still have this rash-like out break on my hand and it's been over a year now.
I've had many muscle and back issues over the years. At this moment I have a shooting pain going down my leg and my lower back is killing me.
I had decompression therapy 3xs/week for 3 years, 3 epidural injections, I use my electro stim pack weekly, back surgeries-L5S1 disectomy on the left side in 1998 with shooting pains down left leg. L5S1 on the right side in 2010 with my right calf down/foot that was numb and I would trip over it.
I feel I have ongoing muscle issues. I did hurt myself in a fall and had 3 knee scopes (2 on left
and 1 on right).
Strange allergies started in the early 2000's-
-neosporin, bacatracin, chloroprep surgical wash before surgeries--large raised patches and extreme itching
-witch hazel from a preparation h pad-had problems breathing and immediately went to hospital and went past ER for treatment because it was that bad.
-shell fish-hard to breath, large patches of raised skin, and extreme itching
Unknown reasons for the following issues:
-nose sores-not sure why I get them, but they get so bad they go from the inside to the outside of my nose. Puss and extreme pain
-rash on hand-Ive had it for over a year and it itches from time to time.
-sweating-when I sweat alot it tends to make my body extremely red and itch--mainly on my face.
-GERD--acid reflux
-extreme constipation
-menstrual cycle twice a month
I am unemployed and have no insurance. (I'm hoping to get this job soon) With the new job will come insurance. I cannot wait to get health insurance. I'm scared because I want to have at lease 1 child of my own. I have a step daughter. With wanting to be a mother, I'm nervous what life will be like without ritalin. I take 20 mg 3 times a day.
Sorry, I am very overwhelmed with all my issues and this is the first time I have ever reached out via the internet or blog.
Thank you for any guidance or help!!!
I hope things are well!! I can't imagine life without meds!!
Take care and thanks again!!