Autoimmune specialist appointment

[calypso]

I went to that appointment with the autoimmune specialist (yeah, the one that I almost canceled because I was sick of seeing doctors) yesterday. He suspects I have one of three problems: 1) a mild autoimmune disease like lupus (but not lupus); 2) an immune deficiency problem (more complicated, but I'll be seeing yet ANOTHER specialist in March to do some tests and rule this out); 3) chronic fatigue syndrome (but I have symptoms that don't really fit this too); 4) God only knows. Chances are it will be the last thing, because this guy I saw was a great, great doctor -- he spent 90 minutes with me and had extensive notes from all of my other docs and past appts. in hand BEFORE I even sat down! I was amazed. But he said he does not see muscle wasting too often, doesn't know why I can't breathe normally, and can't imagine why I have horrible gas but no diarrhea or constipation. He sees a lot of difficult-to-figure-out cases like me -- people with CFS, fibro, Lyme, etc. -- and he says he never finds answers as to why many are sick.

He also runs the university's complementary medicine program and is certified in holistic medicine -- like I said, this guy is perfect for me, because I practice massage therapy and have a strong interest in nutrition and supplements. He wants me to take a mindfulness meditation course and keep up with the supplements I am taking.

Here's the one thing he wants me to try and see what happens. He has prescribed Plaquenil, which is an anti-malaria drug that is used to treat lupus. For some reason, it works for various autoimmune problems. I start today. It takes 3 months to work, and if it does, we will know my problem is autoimmune in nature. If not, then we'll rule that out. I am so glad I have found someone who is willing to try something new, since everything I have tried in the last year is not working.

One other topic: I am wondering if anyone here has had an elevated pulmonary pressure on an echocardiogram. I noticed my pressure went from 22 a year and a half ago to 27 more recently. I have heard that 25 and below is normal, and that a diagnosis of pulmonary hypertension is made for 30 and above. Does anyone here fit into this gray area, and if so, do you actually feel short of breath? My cardiologist interpreted my results as "normal." But I am not so sure.

Thanks, guys.

Amy

[dream02]

I'm glad you went to see him...sounds like it was well worth it! I think it shows us all to never give up. I hope the new meds work for you. I've had several echos but don't know my levels. I'm just now trying to accumulate all my records so that I have more information myself. With all the moving around I've done it's difficult but I'm determined to prevail.

Denise

[Ernie]

Hi Amy,

Congradulation on your perserverance. I am glad that you finally found a doctor that will help you.

Ernie

[biatecki]

Amy,

My respiratory Doc has suspected I may have Pulmonary Hypertension for some years...so I do know a little about it .I have had POTS for over 4 years and the symptoms are very similar .which can really confuse things .I had originally been followed quite closely with echos every 6months but the highest pressure I ever had was 29mmHg . Echos are only estimates and can be off by as much as 10 points. The current guidelines are moving towards a diagnosis of PH at 35 mmHg so you are well in the normal range . Yes I do get SOB with very little effort and also when lying down but I think this is another of those POTS symptoms that are hard to explain but definitely part of the POTS experience.

There are other tests that may help to determine if you need to consider PH ....pulmonary function tests,and cardio pulmonary exs test and of course a Right Heart Cath is the gold standard test . I can certainly give you more info if you are worried but without more evidence you can probably rest assured that you dont have PH!

Hope this helps.

Margaret.

[Rachel]

Amy,

I'm glad you found a specialist who really wants to work with you and figure things out. That is great!

It has been several years since I had an echocardiogram. I don't remember at all what my pulmonary pressure was. And I don't think I even have those records at home to check.

However, I do have problems with being short of breath. And, actually, it is two different types of short of breath. Sometimes my airway actually starts to close off. I recently found that this is probably due to my M2 receptors not functioning properly. But asthma medications do not work for me. There are other times that I get short of breath for no apparent reason. I breathe normally and my lungs fill up with air, but I feel like I am holding my breath. The doctors never did figure out what caused this.

What exactly happens to you when you get short of breath? Do the doctors have any idea what causes it?

Rachel

[calypso]

Rachel,

Well, the shortness of breath is constant -- it just feels kind of like a combination of not remembering how to breathe, feeling like I am breathing through a tiny straw, and like my chest won't expand to give me enough air. I get a really tight sensation in my chest, back and lower throat when I breathe in deeply.

It very well could just be an autonomic dysfunction thing, but mine seems to be worse and more constant than anyone else's here. It doesn't just come and go with standing -- it's here all the time, but it does improve slightly when I lie flat.

Thanks for sharing your experience, Margaret. That makes me feel a little better that the magic # is 35, not 30.

Amy

[briarrose]

Congratulations I finding someone that you like and is helpful.

It was recommended that I try Plaquenil several years ago and I declined because of the horrible side effects. I do use Quinine occasionally.

[Guest tearose]

Hey Amy, you found a keeper I think! He spent a good deal of time listening and talking, he already had reviewed your records and he respects you! He also uses complementary medicine. These all are very hopeful indications that this is someone you can work with.

I don't have the pulmonary information you asked about.

Have you had a chance to do a web search?

Keep us posted on what you are learning. I especially want to hear any revelations on muscle issues! Did you discuss metabolic myopathy at all?

take care, teach that big 18 month old to push YOU in the stroller!

tearose

[leah1321]

Hi,

I just got diagnosed with Lupus last week. I was expecting this but not completely sure which connective tissue disease my dr. would say. My blood tests are not conclusive, but I have had the butterfly rash more consistently now, like the whole month instead of a few hours at a time. I have finger and foot deformities and a knotted up neck that is starting to affect the rest of my body. It was imperative that I try something more aggressive. They put me on Plaquenil because they said that the side effects were less mild than other meds, i could go into remission, and it is safe to use in a woman who wants to have children. I heard quinine is actually worse to use (from Lupus board people and what I read online) because it kills the stomach and eyes even more. My side effects thus far have been mild- queasiness and acid in the throat (I get that anyway) and a few rashes in strange places (think armpits that itch because there are huge lumps all over them. Benedryl cured that one fast though). I have already had some improvement. I am still in so much pain and had the flu all week, but my boyfriend said that he can feel the bones in my neck for the first time in over a year (due to swelling, edema, cruchies and other unknown bulges) and I look less swollen. My rash was interfering with my eyelids and I was having trouble keeping my eyes open. My face looked like I took cortisone because of the swelling I was having earlier in January. Now, i look more like myself. I still have so far to go and I pray I can get there. I hope that this Lupus diagnosis will be a positive because maybe I can have a chance for remission. Unfortunately, I have been peeing blood and protein for more than a year and they just dismissed it since it followed a kidney infection. I have a family history of kidney failure and half of the people with Lupus get some sort of kidney problems. That and having babies are my biggest concerns. (I want to be a mother worse than anything in the world) I think that my team of two of the best rheumies in NY will help me manage my symptoms and maybe even improve my life! Yeah, always go for a second opinion- it really helped me achieve a diagnosis and a plan for care when I had otherwise reached a deadend. My care had become quality of life and drug me up. Now, the plan is add one drug so I can take away like 6 or maybe more! I hope so. I am still waiting for my blood tests to follow. My rheumie has been watching me for 5 years now and has seen me every 8 weeks because he figured something really strange was happening to me. His care and concern has made me feel better about my care in general all along.

I hope you find an answer and a solution. I believe that many of us have POTS/NCS as a secondary disorder, be it post-viral or autoimmune or any other number of diseases that cause autonomic dysfunction. Maybe one day they will understand our illness more. One other thing- I have all these health problems that the Lupus board people feel terrible for me for having. It is a crazy thing because they are common with us, like celiac/wheat intolerance, gastroparesis, rapid heart rate, and many other things. I do not have some of their things yet, luckily, and maybe will not, but they feel equally bad for me. It is an interesting thing. I have so so many of their symptoms and can relate to so much of what they say, but the esophageal spasms and neck pain are here too. I have these two illnesses that go together, but dysautonomia is so little understood. Apparently, the autonomic nervous system really does get attacked in autoimmune diseases more than originally though (I read trascripts of some interviews with doctors to see if there were any links and it was fascinating to see that said).

Sorry for blabbering. I was not sure how to share my new diagnosis with everyone. I am pretty bad off as far as the Lupus like symptoms go, but my POTS seems to be under slightly better control. They flip-flop now so that I am in a flare with one or the other and no free time. I used to have massive flares of both at once and then some free time, not much, but some. I am not sure which is better. I do a lot more now and can function at a higher rate, but I feel like I suffer 100% of the time, just sometimes it is a manageable suffering (with the help of oh so many meds ugh).

Leah

[Laura]

Hi Leah! I am so glad that you shared this with everyone! How wonderful that they have found the exact problem and can now start treatments that should actually work! Sounds like you are having some improvement already! Yea!! How did they end up with a firm diagnosis? Was it because of the rash, or because the plaquenil was working? What a relief! I hope you have continued improvement in leaps and bounds!! Laura!

[calypso]

Leah,

I am so sorry you were diagnosed with lupus, but at the same time happy that you have an answer as to why you have been feeling so odd and so horrible. I know that diagnosis is sometimes bittersweet in that sense. I assume the rash was the clincher for your diagnosis? Did you have a positive ANA and high sed rate, or anything else that led your rheumatologist to think it was lupus? Just curious, as my rheumatologist thinks I may develop lupus down the line.

So far, the Plaquenil is making me a little nauseated and I have some mild headaches. But otherwise I am tolerating it. Of course, it hasn't even been a week, and I am supposed to go up to 200 mg 2x/day in another week. How much are you taking?

I completely understand how you want children and don't know what the chances are. But there are many women who have autoimmune diseases and have children successfully. I think the key is having a good team of doctors to manage you, and it sounds like you already have that. The only thing I'd caution you on is to make sure you're prepared to deal with the fatigue following childbirth ... and have a good support system (parents, mother-in-law, etc.) to help take care of the child.

Feel free to post or e-mail me.

Amy

[Laura]

Leah, I wanted to add that I have a friend diagnosed with lupus when she was in her early twenties and she has since had two little boys! She's in her thirties now and doing very well! Laura!

[MomtoGiuliana]

Leah--I'll just add that one of my mother's best friends has lupus. She has one son who is about my age (mid-30s). She has a full, active life, and although does have flare-ups, she is basically highly functional. I think there is a lot of hope for you.

[ethansmom]

Amy-

This doctor sounds a lot like mine- he is also an autoimmune specialist who treats CFS, Lyme, etc..and that is how I found out recently that I do have traces of Lyme in my system as well as an active Mono infection, no question that there are immune system deficienes there. Is your doc going to be doing any blood tests to confirm his suspicions? Those tests saved me, after more than 3 years of wondering HOW I got sudden onset POTS, we finally seem to be on the right track. We won't be doing any treatments for the Lyme until after the baby is born, but I feel really comfortable with this doc and am glad to have someone willing to go an extra mile to find out what is going on. I wish you good luck!!!

And Leah- I am also sorry to hear about your diagnosis but I really hope that it will help you resume a higher quality of life. Feel better soon!