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Life With Lupus

Wondering if I might have lupus


#1

I have had different health issues. In 2015 I had an episode where my face swelled way up, luckily without affecting my airway. A couple of days after that, may hair began falling out until half of it was gone. I was “diagnosed” with idiopathic angioedema. When I asked if that would cause the hair loss, I was told that it wouldn’t, but they couldn’t provide an explanation for that. I have had episodes of tennis elbow to the point that I’ve needed surgery on both elbows. I’ve had surgery on both feet for arthritis. I have scarring in my lungs, which has been called bronchiectasis. A couple of weeks ago, after a vacation in the sun, a lymph node in my neck swelled up to the size of a golf ball, with no further symptoms. I’ve been getting cysts and bacterial infections. My eyes swell up sometimes and they are dry. I’m concerned that I may have lupus, since I’ve had so many medical issues that haven’t been connected. When I finally got in to see my doctor for the swollen lymph node and asked my doctor for blood work to check my immune function, she said that I had that testing done in 2015, and it was fine, so I didn’t need it again. It’s very possible that I don’t have lupus; however, I am wondering if anyone else might have had all these issues prior to their diagnosis. I had a very faint rash across the bridge of my nose in 2015, but that’s the only time I had that.

I also was referred to a rheumatologist in 2015 after an allergist was unable to determine why I had angioedema, and the rheumatologist ordered blood work with an ANA test, which came back negative. I was not scheduled for any follow up after the negative blood test. I don’t know if a person can have lupus if an ANA blood test has come back as negative.

I was recently signed on with a different family doctor after mine retired. Since I was signed up with this new doctor a year ago, I have actually not been able to book an appointment with her. Anyone from northern Ontario will be familiar with this issue. I have had to see on-call doctors, nurse practitioners or physician’s assistants in order to get in to see anyone when I’m actually having any symptoms. Although the have electronic medical records, there is no continuity of care, and I have had to tell them that I’m allergic to certain medications when they’ve tried to prescribe them to me, so I don’t think they actually take the time to read the records and put symptoms together. I’m feeling frustrated and like there must be something more going on with me, since I’m having all these different issues.

Thanks for letting me vent about this!


#2

So sorry for your frustration. I think most of us who experience autoimmune disease go thru similar things in regard to non-diagnosis. Bloodwork is not conclusive although many physicians treat it as such. I do have positive ANAs when tested, however, the other markers usually seen in bloodwork of Lupus sufferers are absent. A Lupus friend of mine never has a positive ANA. So the point being, everyone is different and there are no definitive blood tests for Lupus (despite what some physicians believe). My Lupus was diagnosed through capillaroscopy (fingernail ultrasound) which showed extreme evidence of connective tissue disease.

To answer your question, no, I have not experienced the symptoms you’ve described, but that doesn’t mean much since every Lupus sufferer has their own unique set of symptoms. All the inflammation you described is very suspect. I would suggest you continue searching for a rheumatologist that is knowledgeable and current on new information. It’s a daunting task but worth it. Not all specialists are equally proficient at their job (sadly).


#3

Thanks so much for your reply. I’ve never heard of a fingernail ultrasound. I wonder if it’s definitive? Do you know if it’s a common test? I live in a very rural area, and kind of doubt the ability of many of the doctors here. Many are older and just seem to be coasting through until they can retire.


#4

Hi Jeelise,

The ultrasound is definitive for ‘connective tissue disease’ depending on what’s observed. My rheumatologist said that my ultrasound was the most extreme example of the disease that he had ever seen. The test shows the capillaries in the bed of the fingernail, and if CTD is present you can see collagen leaking from the capillaries in varying degrees depending on the severity of the person’s condition. It does not however specify which CTD a person has. My doctor used my symptoms, my +ANA, and the ultrasound results to diagnose Lupus.

I don’t think general practitioners do capillaroscopies, you would probably need to go to a rheumatologist for that. I truly don’t know how common they are, but mine had the tiny machine right there in his office and it only took 2 minutes for him to diagnose connective tissue disease. If I remember correctly, it is a relatively new procedure.

Feel free to ask me questions anytime. I’ve been ill for 40 years and just got diagnosed last year, so I understand completely the frustration of searching for answers and not getting any. Most GPs are not adequately educated in autoimmune diseases. Medicine has come a long way over the years, but sadly autoimmune diseases are still misunderstood by many in the medical field. I wasn’t referred to a specialist last year until I requested to be referred. No one understands our body more than ourself!

Truly, Diane


#5

Hi Diane - wow, that’s a long time to have to persevere to get a diagnosis! I am planning to ask my internist what he thinks about an immunological process going on with me. I don’t know if he will think so or not. I feel like none of the doctors is putting all the symptoms I’ve had together to get a complete picture. They only want to deal with one thing, and not see that everything together might add up to something else. I don’t really want to be diagnosed with lupus, but if a diagnosis of some kind of disease process will help slow things down, I’ll be happy.

Thanks for sharing with me.
J.


#6

Hi,

Actually, I didn’t persevere in searching for a diagnosis for all of those years. In my mid-twenties I gave up searching for quite a while out of frustration, due to the very things that you just mentioned. You are so spot on when you said that most doctors just want to deal with one issue at a time and they don’t put together the pieces of the puzzle to look at the whole picture. That’s why you need a diagnostic specialist like a rheumatologist. I would approach your doctor with a complete list of your symptoms and request a referral to a rheumatologist. If he refuses, I would then ask for an ANA to be done (simple blood test). If it comes back positive you would get your referral. I wish I had been more proactive with my condition earlier on, but I let doctors intimidate me. I learned that they are no better than you or I, and let’s face it, it’s your body and your health. They should be listening to us and respecting our concerns and requests.

I wish you much luck! You can do this. Let me know how your pursuit for answers goes.

Truly, Diane


#7

Thanks again! I have put together a list of symptoms that I plan to show my internist when I see him this coming week. I’m hoping that he will move towards putting things together. I have had a new doctor for the past year since mine retired, and have never actually managed to book an appointment with her. I have filled out paperwork to try to get a different family doctor, that I might actually be able to book an appointment with, but there is such a waiting list for doctors in my area, I don’t know if it will happen.

My husband sees a rheumatologist for psoriatic arthritis, who is not very approachable, and is very rigid in his treatment; if my husband questions the medication he’s prescribed, the rheumatologist doesn’t change anything. I wish that we could find an approachable rheumatologist that is willing to see the patient’s point of view. Someone like that can make such a difference in their patients’ health.

I will keep my fingers crossed that the internist will look further into things for me.

Take care
J.


#8

Excellent strategy. I don’t have Lupus (I’m a member of the PsA club) and that’s something we often recommend to people who think they might have PsA, but who are having a tough time getting to the diagnosis.

I might even go so far as to print off a comprehensive list of signs and symptoms of Lupus and use that like a check list, and write your “bonus” symptoms on the bottom. That’s a bit more in-your-face than a list of your symptoms, but you’re at a stalemate, so why not?

As for an approachable rheumatologist goes, see my latest PM to you.

All the best! Do let us know what happens at your appointment.

Seenie from Moderator Support


#9

I got the message about the Toronto Clinic…thanks yet again. I hadn’t thought of printing out the symptoms of lupus as a comparison, so I will look for a list and take it with me too. Great ideas!


#10

I too have been having severe hair fall, is it due to the medications? can any please help me… I have been reading lot of online resource like life with lupus, web md and EverydayHealth they are also mention hair loss is due to the medication side effects. What do you recommend I am oiling my hair weekly, I taking hydroxychloroquine and azathioprin, I am @#@$$ worried as they are just falling like autumn leaves !!:sob::sob::sob:


#11

Prenatal Vitamins! Regardless of being a man or a woman prenatal vitamins are simply super-charged multi-vitamins that do wonders for both hair and nail health.

I have had serious hair loss as a side effect to an anti-seizure med I take as a preventative for migraines. The prenatal vitamin once a day has done wonders for my hair loss.

azurelle