Possible autoimmune problem?
Posted , 3 users are following.
Hi guys,
Here's my history. I'm 28/F. Back in June my turbinates (glands in the nose) swelled and have been swollen since. Medication hasn't solved the problem so am on the waiting list for surgery. My ENT also referred me to an allergist which confirmed multiple allergies and I'll start immunotherapy in April. I've had allergies for years but they've never caused me this much trouble and nothing in my enviornment changed. My breathing problems go beyound having a blocked nose. I have asthma, although sometimes I wonder if it's infact my lungs inflammed instead. Breathing often feels like I have a tight throat and chest, like I can't get my lungs full or it dosen't go down properly. Breathing through my mouth feels the same. In this time I've also had the flu 3 times, coldsore 4 times, noticeable hair loss/thinning especially on my scalp, pigmentation and broken cappilaries on my face, reoccuring neck pain with migraines and 12kg weight loss. I count calories and even on the weeks I've been over I've still lost weight. My anxiety has also raised recently. My health can come good temporarily, for a week or two and then it crashes again. I've been seeing a new doctor since my last one was getting complacent. He did bloods. Only things of note were B12 slightly low and Positive Speckled ANA 1/80 titre. He sent it for further testing for dsDNA and ENA which came back normal. Obviously this goes beyound having a blocked nose. I've had a couple of doctors be quite dismissive and treat me like a hypochondriac but the fact is many days I'm struggling to breathe and just do not feel or look well at all. I've tried to tell myself it's in my head and it will get better but here I am 8 months later and it's getting worse. Do these symptoms sound familiar to anyone and could this be an autoimmune/inflammatory issue?
Thanks kindly, Skye
0 likes, 13 replies
margaret22116 Guest
Posted
Hi yes beyond that isn't it. Suggestive of Lupus really and dsDNA not always positive but for some unknown reason some docs want to tell you it is decisive.
Where are you based? I would get in touch with my national Lupus association or support group. Are you seeing a specialist? I assume so given the testing you have had.
Guest margaret22116
Posted
Thanks for your reply Margaret. My doctor did the blood test. I researched SLE and it does sound like it could be. This is a new doctor so maybe he wants to see me over a longer period of time before deciding. I can understand them being cautious. When the dsDNA came back negative he said I don't have an autoimmune issue and instead issued an xray for my neck pain, which will be interesting to get the results. I'll be going back on Monday and want to prepare what I can say in order to get to the bottom of this. I'm thinking that requesting a scan of my lungs might be the next suitable step? If we can find out if there's infact inflammation of my lungs then that could help give me a reason to push further in regards to autoimmune. What do you think? By the way, my Rheumatoid Factor came back as <14 which I think he said is borderline? I'm in Australia. I've never seen a specialist without a referal but it should still be possible.
margaret22116 Guest
Posted
hi, yes it is good to rule everything out. That's really just as important to do. It reduces the possible different diagnoses which could be made. I had the same neck back pain and that turned out to be caused by inflammation but that was diagnosed on history really and seeing different specialists. Dos not show up on scans. IT was hideously painful so I know what you're going through. I have Behcet's rather than Lupus but really, very similar symptoms. Almost sad to hear you are in Australia, I know from my international help group that these sorts of disorders are really hard to get diagnosed in Australia. But you should be able to find a national help group or association who could give you a bit of advice.
Guest margaret22116
Posted
Yes, from what I've read Lupus requires some serious medications which one would not want to be on if that wern't the case. Thanks for your support. Thanks for letting me know that inflammation may not show up on scans. That dosen't surprise me about Australia unfortunately. Hopefully my appointment will go well on Monday and if not I might see if I can pursue a specialist privately.
margaret22116 Guest
Posted
hi, yes hope it's a good appointment. If not, let me know and I will ask my fellow sufferers in Australia if they can recommend a good specialist but I know it's such a big place that you would have to find someone within reasonable distance. Good luck. Keep us updated.
Nu2this Guest
Posted
Hi Saturn,
My symptoms began just like yours with the exception that I had never suffered from allergies at least it wasn't obvious to me. They started around Feb of last year. I started using Afrin because of the blockage. When it got worse, I visited an ENT specialist and was told I needed surgery for my sinuses and a deviated septum. I went through wit it and everything got entirely worse. I quickly realized I was having trouble swallowing, i lost 18 pounds in a month and a half. I definitely could not breath and there was dryness in my nose and throat. I was told after initial bloodwork that I was negative for Sjogrens but positive for connective tissue disease. I sort the opinion of another Rheumotologist because the meds they put me on only gave me aggressive joint pain. I underwent more testing, and that revealed I had a speckled ANA with an elevated rheumatoid factor. At first my doctor thought I had Scleroderma because of my swallowing issue but after a manometry ruled that out. At this time, he believes its Rheumatoid Arthritis. The inflammation is very high.
I have been on Methotrexate the last 3 months. There has been some improvement to my joint pain and small improvement to my nasal congestion but not one that I am completely at ease with. I have gone to an allergist and was told that I was allergic to every tree in my state but I can't be on any antihistamines because it causes further dryness. Right now all i do is use a saline spray to keep my nose moist. I don't really know if at some point, the meds will help the swelling in my nose but I pray they do. Just trying to breathe makes anyone extremely tired. I really don't know if its related to autoimmune or allergies but i can truly sympathize. I definitely think its the inflammation because if it was allergies, so many other allergy suffers would complain about the same thing. And yes, I find doctors to dismiss this symptom quite quickly and focus only on the joint pain but this symptom us very real and can cause an overall malice. My advise is to see all the specialist you need but have a Rheumotologist do a complete bloodwork to rule out any autoimmune or connective tissue disorder. Then see allergist and ENT. Like I said, I have gotten slightly better. I hope that Im just a slow healer. I pray for your improved health. Keep me posted on nasal symptoms as I still have some. God bless and good luck.
Guest Nu2this
Posted
Thanks for your reply Nu2this. Yikes, I'm sorry to hear that. My surgery isn't scheduled until November, which I'm glad about because I do suspect other underlying issues. I've actually had four surgeries before for unrelated things and even in good health I ended up in hospital for a long time with complications/am a slow healer. The plan was that with immunotherapy, that could cure my allergies thus wouldn't need surgery but it's at that stage I'm looking at my symptoms and maybe this isn't 100% allergies. Like you, I tested positive for most pollen as well as mold and animals but that wasn't news to me and dosen't explain why I'd be losing hair for example. What was your Rheumatoid Factor? Mine was <14 which I think they said was borderline but not sure. Is your swallowing any better now? That would be horrible. I have had a dry throat and mouth no matter how much water I drink. I always thought Rheumatoid Arthritis only affected joints. Can it inflame tissue also? Is Connective Tissue Disease a disease in itself or an indication of something else? I'm sorry that it sounds like you still don't have clear answers yourself. Hopefully you can keep working with your doctors and get well soon. At this stage I'm thinking of asking my doctor for a scan of my lungs, since that's of most concern to me and could back up my theory of inflammation. Do you find it affects your lungs at all or stays in the sinuses? Thanks for your kind wishes.
Nu2this Guest
Posted
In response to your question, I feel the congestion only in my nose. I think for me its a combination of both allergies and RA. I am not sure if RA causes inflamation of the nasal passages but I assume so as it causes inflamation everywhere else. I pray that the meds will help with the swelling in my nose as it causes dryness afterwards. My rheumatoid factor is 27 which is very high according to my doctor. He wants to see it below a 20. With these meds I have to keep monitor my blood for liver damage I believe. To be honest this is all pretty new to me. Im learning as I go along.
Guest Nu2this
Posted
Yes it makes it hard when it's a combination of things. I'm not sure if it's even advised to have allergy immunotherapy with an autoimmune problem. I totally understand how you feel with the swollen turbinates, it's a horrible thing to live with. For the first four weeks in June I had to breathe only through my mouth. Now it's at about 70% blocked. The nasal steroid sprays are keeping them from blocking completely but it doesn't look healthy up there. Pale and dry. I actually don't mind the dryness as I used to have a runny nose all the time which got embarrassing all though this dry throat/raspy voice has been persisting for a couple of weeks now. I can see if you have extreme dryness that would cause problems. My turbinates have been slightly better since I started taking Curcumin tablets. Thanks for sharing your Rheumatoid Factor with me, that gives me some perspective. Hopefully you can bring that down. I guess these things can take time to see improvement.
Nu2this Guest
Posted
Yes, autoimmune can sometimes take time to be fully diagnosed. Alot of people go undiagnosed for years, as I've seen on this forum. I have been blessed to have Drs that have recognized the symptoms. My Rheumotologist and I are working together to make sure that RA is what I have and be on the best treatment. The good thing is that alot of the meds are one im the same for some disorders. The key is to get examined and treated so there is no permanent damage to joints or organs. Be persistent. You know your body, you know when somethings up. If you don't feel comfortable with one doctor, move on to another on til you are comfortable communicating your symptoms and them being acknowledged in the correct manner. Be good, be strong, be healthy
Guest Nu2this
Posted
Yes I was reading that the average time to get diagnosed is seven years which is shocking. I'm glad you have good doctors. That is half the battle! I like my new doctor, he's been very good except for the last time. Maybe he was just having an off day. It must be hard being a doctor, particularly a surgeon. They have to be on their game constantly. That's interesting that the meds are the same for some disorders. My Grandma has severe RA and she's only in her 60's. I'm not very close to her but maybe I should try to discuss it with her. Did you have any hair loss or weight loss? Are you male or female? I've known for some time now that something is not right at all. For 8 months I've been hoping I'll get better but I only get temporary relief before it comes back worse than before. Last night I was having trouble breathing again so I decided to test my theory of lung inflammation instead of asthma so I took ibuprofen which is a no go for asthmatics. An hour later I felt much better and last night + this morning I blew my best peak flow reading in ages. I suspect my Xray will come back showing nothing so in other words my persistent neck pain + headaches is caused by inflammation also. That tells me there's inflammation in my sinuses, lungs, head and neck which I will discuss with the doctor and insist on a referral to a Rheumatologist. I rang to see if I can get in without a referral but they said no. Something that gets in the way is I have bad social anxiety. Doesn't help when doctors tell me it's my anxiety and I'm worrying too much. Thank you for your support!
Nu2this Guest
Posted
I did loss about 18 pounds in about a month and a half due to the dry throat and difficulty swallowing. I couldn't breathe and couldn't swallow so I immediately lost my appetite. I am 49 years old and a female so I thought my symptoms were due to menopause but that wasn't the case. I was feeling anxious due to the fustration if not healing and feeling losy but not just because. I always had some hair breakage but not much. It wasn't until I was put on methotrexate that my hair started falling out alot. I mentioned it to my Rheumy and he up my dose of folic acid and told me that if it continued that he would change my meds. That led me to believe that its the meds thats making my hair fall out. I hope this helps. Im sure you Rheumotologist will run the appropriate tests.
Guest Nu2this
Posted
Years ago I had trouble swallowing for period of time so I know how bothersome it is. I put it down to intense anxiety at the time but it could have been medications. Anxiety is a part of chronic health issues, especially when one has trouble finding answers, not healing or lack of support or medical help. It sounds like you're on the right path with treatment now. It does help, thank you. My hair loss was really bothering me back in August when it first occurred, same with the redness in my face and broken capillaries. It comes and goes in waves. I've kind of come to terms with how I look is the least of my worries at the moment. I can't stop thinking about what I need to say to the doctor on Monday and hope he gives me a referral. These issues have gone on long enough and my breathing is in a bad way.