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Old 10-01-2010, 07:58 PM   #1
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Unhappy Can't take ANA PLEASE help

I have CVID (Common Variable Immunodeficiency). It is a primary immune disease. Having this makes me more susceptible to autoimmune.

Ok, one of my chest CT scans BLEW up, got a biopsy, they diagnosed me with Valley Fever (an endemic in my area, a fungus) but were "guessing" based on symptoms. Guessing because I do not produce antibodies or produce them so low they are undetectable, so the test for VF will always show negative. Severe fatigue, low grade fever are only symptoms. I was off work for 6 weeks. During that time I woke up in horrible pain. Literally had to roll out of bed. I just sucked it up because I was already out of work. When I went back to work I almost fell when I attempted to stand up out of my chair. Not good. Went to rheumy he ran a bunch of tests. All negative so its fibro.

If I cannot take an ANA because I cannot produce antibodies, then what do I do? I told my rheumy I've had a strange rash for months, I developed this "frozen finger" thing like Reynauds. At work my skin turned purple with this big white patch. Now my hair is falling out, I got these blister looking things on my eyeballs, my feet swelled up SO bad, my friends thought they were broken. And the pain WOW. I already had arthritis. But this? I couldn't even turn my neck to change lanes properly. Now I have scabs or sores or something in my freaking nose. Temperature again of 99.7 today.

Is this lupus? My rhemy says no way and seems to think I can spontaneously make antibodies now that I get IgG. Tried to get a 2nd opinion outside of Kaiser and they want me to drive 3 hours to another Kaiser facility. NO way.

I looked at that checklist of lupus on this site and fit almost all of one, and several of the other list (4 miscarriages, horrible menstrual cycle, had ITP way back when, twice). I mean fibro and lupus both suck, does it matter? I don't know why I am so insistent on finding out the truth, but I really feel misdiagnosed. I am a single mom, have a lung disease and an immune disease and now something else. I am not hanging on very well. I work full time and come home and sleep. My poor child. I need an answer to maybe get some help. Thank you.

 
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Old 10-02-2010, 05:46 AM   #2
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Re: Can't take ANA PLEASE help

Kelli, hi & a warm welcome. First off, for lupus basics, you could read all the "sticky posts" (permanent info posts) at the top of the thread list. For in-depth reading, you could then hit your local library.

I'm not sure what you mean "that you get IgG". Do you mean something that's therapy? Or that you've tested positive for something to do with IgG?

I can share a few things I encountered in my own saga.
1. Do you know what tests your rheumie ran? (You should always ask for a copy for your own files.) Do you see anything more specific than ANA? I ask because ANA is only a threshold test. The more specific tests are the ones that help to narrow focus to one or more specific conditions. My drs. were only running ANA for some years, and that wasn't helpful in my case.
2. ANA can vacillate as certain autoimmunes flare & recede.
3. In certain subsets of lupus---DLE (discoid lupus) and Ro-lupus---ANA stays negative by definition.
4. Skin problems can be very helpful when biopsied by a dermatologist or dermatopathologist, in lupus and many other conditions. Have you been sent to either for consult & tests? What does your "strange rash" look & feel like? Re: your hair loss, do you see any lesions on your scalp? Do you think sun acts as a trigger for any of your symptoms?
5. Have you seen an eye dr. for the "blister things" on your eyeballs? (These sound scary. I've had tiny eyelid blisters, never on eyeballs.)
6. My mom had APS, a blood clotting disorder seen in lupus and also standalone. There's a sticky post specifically on it. (Your mention of miscarriages & Raynaud's stood out.)

Since you had two findings of ITP in the past, are your platelets checked ongoing? I *think* low platelets would qualify as meeting the blood abnormalities criteria for SLE. By the way, once you meet a criteria, I believe it's supposed to be viewed as checked off permanently, as if you'd used indelible ink, as my rheuatologist explained it.

On another subject, a friend with a breast tumor managed to compel her HMO to send her to local non-HMO doctor for a consult. In her insurance contract, I think she reviewed sections titled appeals, second opinions, non-network, or something along those lines...? Or else she just raised a huge ruckus to pull it off! Have you called your HMO's main office to discuss if/how how you can solicit other medical help closer than 3 hours away?

Of course I'm just a patient, but I hope something here helps a bit as you work thru your problems with your drs. Also, that you post more when you can! Sincerely, with warm wishes, Vee

 
Old 10-02-2010, 10:33 AM   #3
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Re: Can't take ANA PLEASE help

Hi and thank you for responding. Let me answer all of your questions. In my primary immune disease (think bubble boy) it is untraceable but it is treatable by getting Immune Globulin via IV or subcutaneously. It helps to "replace" my immune system Gosh hope that helped explain my primary disease as well as the IgG.

I have NOT ever seen them test for anything but ANA. I was pretty good about getting my labs for last year but those only included my platelett count and immune count. I would have remembered. The only thing that was tested once was mono's, lymphos, and neutraphils? RBC auto a little low, hct auto - low, neutrophils low & monos high, tsh high, esr high still. By some miracle I actually have antibodies to hep A & B. I also have a clotting disorder called a Prothrombin Gene Mutation Factor 20210 or I am hypercoagualbe. So I was once a bleeder and a clotter at the same time. Thats what caused the miscarriages so they told me.

The rash. Ok I have had eczema my whole life - only on my hands and sometimes feet. I got out of the shower & saw this BLOTCHY rash on my upper arms and it got bigger & bigger but now its smaller again. Didn't really itch it was just shocking to see. I have a pic on my FB bcuz you KNOW when something isn't right. Doc blew it off said I couldn't tolerate hot water? ***? No one has sent me to a dermatologist. Also don't really go in the sun. Yesterday at work, walked from the parking lot to the office, less than a one minute walk and I looked sunburned. Co-worker noticed it. I was like good God lol & no lesions on my scalp.

Eyeballs - one doc said oh its nothing its overgrowth of the white of your eye? Never heard of that thank you.

I have been trying to compel Kaiser to let me see a rheumy OUTSIDE of Kaiser and just had to file a complaint against them. They keep trying to make me drive 3 hours one way to see one of their doctors. Im a single mom with multiple health issues and being crammed in a car is next to impossible for me.

I seriously feel the docs are missing something. I got REALLY sick in June & they diagnosed me with Valley Fever. Well I have lived here my whole life I should be immune to it honestly. Biopsy NEVER found spores. Nothing but scar tissue. The docs are just totally blowing me off. If I can afford it, going to a PPO next month not effective until Jan 1st. Thought I would post here before giving up completely. Thank you

 
Old 10-02-2010, 05:04 PM   #4
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Re: Can't take ANA PLEASE help

Where you have lung disease could be causing your symptoms of severe fatigue and even the swelling in your feet, because you can get water retention with lung disease. Primary Raynaud's Phenomenon has a negative ANA and normal ESR, and absense of pitting scars/ulcers on the skin. Secondary Raynaud's Phenomenon has a positive ANA, ESR, and the presence of pitting scars or ulcers on the skin. Diagnosis methods used: Nailfold Capillaroscopy, Cold stimulation Test, ANA, and ESR.

Nailfold capillaroscopy (study of capillaries under a microscope) can help the doctor distinguish between primary and secondary Raynaud's phenomenon. During this test, the doctor puts a drop of oil on the patient's nailfolds, the skin at the base of the fingernail. The doctor then examines the nailfolds under a microscope to look for abnormalities of the tiny blood vessels called capillaries. If the capillaries are enlarged or deformed, the patient may have a connective tissue disease.

The cold stimulation test is another test that your doctor might use to diagnose Raynaud's phenomenon. A cold stimulation test measures the temperature of each finger after being submerged in an ice-water bath. Heat sensors are attached to your fingers and temperatures are recorded until your finger temperature measures the same as it was before being placed in the ice-water bath.

If your temperature is under 100, I probably wouldn't worry too much of it.

I get the same way with the sun, can be out in it long enough to get in the vehicle & take a ride to town and I look like I've layed out in the sun all day, but I don't have to be exposed to the sun for that redness to flare up. I don't get nasal sores often but always getting mouth blisters (inside & on my lip), I've had the severe fatigue 13 years and the pain around 10 years, it variates from crampy, to tingling pain, pins and needles, and burning pain. I also get alot of muscle spasms (tightness & pain). I'm just getting the dx of MCTD but I have had the dx of fibromyalgia for at least 9 yrs. The difference in the diagnosis is basically this: neither is going to matter as far as pain treatment goes, but if it's autoimmune you might respond better to corticosteroids and NSAID's, also there isn't anything that can take the place of an anti-malarial like Plaquenil if it is an autoimmune disorder because that really is your only hope in feeling better.

Doctors look more at your ESR & CRP levels to determine autoimmune disease but it doesn't have to be elevated for the disease to be present. You can be very sick too without it being autoimmune, my mom has osteoarthritis, she swells from it, hurts all the time, stays tired, but she won't wear her CPAP so I'd say that adds on to the fatigue, but her ANA was negative for autoimmune disorders.

You could ask your rhemy to try you on plaquenil just to see if it helps your fatigue any because some people have Lupus with normal ANA's. If you don't respond to the medication, then maybe it's something else causing your symptoms.

 
Old 10-02-2010, 05:13 PM   #5
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Re: Can't take ANA PLEASE help

Quote:
Originally Posted by neveragain444 View Post
Where you have lung disease could be causing your symptoms of severe fatigue and even the swelling in your feet, because you can get water retention with lung disease. Primary Raynaud's Phenomenon has a negative ANA and normal ESR, and absense of pitting scars/ulcers on the skin. Secondary Raynaud's Phenomenon has a positive ANA, ESR, and the presence of pitting scars or ulcers on the skin. Diagnosis methods used: Nailfold Capillaroscopy, Cold stimulation Test, ANA, and ESR.

Nailfold capillaroscopy (study of capillaries under a microscope) can help the doctor distinguish between primary and secondary Raynaud's phenomenon. During this test, the doctor puts a drop of oil on the patient's nailfolds, the skin at the base of the fingernail. The doctor then examines the nailfolds under a microscope to look for abnormalities of the tiny blood vessels called capillaries. If the capillaries are enlarged or deformed, the patient may have a connective tissue disease.

The cold stimulation test is another test that your doctor might use to diagnose Raynaud's phenomenon. A cold stimulation test measures the temperature of each finger after being submerged in an ice-water bath. Heat sensors are attached to your fingers and temperatures are recorded until your finger temperature measures the same as it was before being placed in the ice-water bath.

If your temperature is under 100, I probably wouldn't worry too much of it.

I get the same way with the sun, can be out in it long enough to get in the vehicle & take a ride to town and I look like I've layed out in the sun all day, but I don't have to be exposed to the sun for that redness to flare up. I don't get nasal sores often but always getting mouth blisters (inside & on my lip), I've had the severe fatigue 13 years and the pain around 10 years, it variates from crampy, to tingling pain, pins and needles, and burning pain. I also get alot of muscle spasms (tightness & pain). I'm just getting the dx of MCTD but I have had the dx of fibromyalgia for at least 9 yrs. The difference in the diagnosis is basically this: neither is going to matter as far as pain treatment goes, but if it's autoimmune you might respond better to corticosteroids and NSAID's, also there isn't anything that can take the place of an anti-malarial like Plaquenil if it is an autoimmune disorder because that really is your only hope in feeling better.

Doctors look more at your ESR & CRP levels to determine autoimmune disease but it doesn't have to be elevated for the disease to be present. You can be very sick too without it being autoimmune, my mom has osteoarthritis, she swells from it, hurts all the time, stays tired, but she won't wear her CPAP so I'd say that adds on to the fatigue, but her ANA was negative for autoimmune disorders.

You could ask your rhemy to try you on plaquenil just to see if it helps your fatigue any because some people have Lupus with normal ANA's. If you don't respond to the medication, then maybe it's something else causing your symptoms.
Weird, I do have the nailfold thing too. I was just happening to my fingers and I would shake shake shake them to get the blood back in them, breathe hot air on them. Very weird. Then at work I was just sitting there typing and my arm developed this HUGE white spot, it looked like someone had grabbed me, VERY weird, kinda freaked me out.

My rheumy isn't going to do anything for me. He will not listen to me about my immune disease. I will not spontaneously make antibodies to be able to test for an ANA. He thinks I can therefore it is impossible for me to have Lupus. He also said that I POSITIVELY have Valley Fever because the infectious disease doctor "said so". Well no he changed his mind and thinks it is NOT VF, is anyone listening to me? NOPE. So im still taking 400 mgs of Diflucan per day. So, i have given up tyring to have any sort of life. Kaiser will NOT treat me, listen to me, listen to outside doctors, etc. I will just have to suffer until new insurance takes effect in January. God this totally sucks.

 
Old 10-03-2010, 05:24 AM   #6
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Re: Can't take ANA PLEASE help

There is the possibility that where you have CVID, that plaquenil would just make you feel worse. You really don't want medications to suppress your immune system since you are deficient. So even if you did turn out having Lupus, it could make your treatment difficult.

What I would do for starters is go back to the infectious disease doc and have him properly evaluate you for valley fever. They can do a sputum smear or culture and check for the presence of coccidioides organisms. They can also do an x-ray and look at your lungs. I would go back for a more definitive diagnosis, this condition can also weaken your immune system.

It's not just your doctors. Any doctor you go to, most are going to be like that. Very few go that extra mile to do whatever it takes to find out what is wrong with you. If you want something bad enough, you just have to demand it, they usually aren't going to offer even if it's something that needs done. Try not to let yourself get all frustrated over it.

 
Old 10-03-2010, 09:16 AM   #7
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Re: Can't take ANA PLEASE help

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Originally Posted by neveragain444 View Post
There is the possibility that where you have CVID, that plaquenil would just make you feel worse. You really don't want medications to suppress your immune system since you are deficient. So even if you did turn out having Lupus, it could make your treatment difficult.

What I would do for starters is go back to the infectious disease doc and have him properly evaluate you for valley fever. They can do a sputum smear or culture and check for the presence of coccidioides organisms. They can also do an x-ray and look at your lungs. I would go back for a more definitive diagnosis, this condition can also weaken your immune system.

It's not just your doctors. Any doctor you go to, most are going to be like that. Very few go that extra mile to do whatever it takes to find out what is wrong with you. If you want something bad enough, you just have to demand it, they usually aren't going to offer even if it's something that needs done. Try not to let yourself get all frustrated over it.
Thank you neveragain....I don't think it was valley fever either there were NO SPORES found with the lung biopsy. Get chest ct's every 3months all resolved except 3 new spots....Thats when the infectious disease doc started saying no. I still have a stinking fever lol I haven't spoken to him. I called him crying (picture the ugly cry) after NO ONE at Kaiser would see me, my hair fallin out, purple skin, blistered eyeballs all of it. He said come in and I'll start you on prednisone. His office refused to see me without my co-pay, wouldn't take a post dated check, would not work with me, he even said no. I had been seeing him for 2 yrs and he refused to see me over $25? So he's no better than Kaiser. I had been given a very bad med by rheumy (nortryptalene) and i don't tolerate antidepressants well and told his nurse OFF and have never been back Jerk.

 
Old 10-03-2010, 11:31 AM   #8
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Re: Can't take ANA PLEASE help

Kelli, I read some & can better appreciate the complexity of what you've said. re: SKIN, I saw quite a number of skin problems that can accompany CVID. Have your drs. reviewed all of them with you? Some examples I saw are alopecia (hair loss), lesions that depigment, dermatosis, PLE (polymorphic light eruption), etc.

Is your purple skin like bruises, or what? Where is (or was) it purple? Have you heard of "purpura"; is it like that? Did you say you'd had ITP (idiopathic thrombocytopenic purpura)?

re NEGATIVE ANA, I saw lists of other autoimmunes that can occur with CVID. On one list, the very first noted was RA (rheumatoid arthritis), and lupus wan't listed at all. That's interesting to me, because I think, unlike lupus, in RA a large percent are ANA-negative. You could read & ask your dr. for input.

And I think there are other negative-ANA autoimmunes. Behcet's, a form of vasculitis, includes mouth ulcers, eye inflammation, CNS involvement, and probably things I've never heard of (sorry, I've only met one person with it).

I also saw that pain is a possible side effect of Ig therapy itself. Has your dr. described what this might be like, meaning lag time, duration, location of pain, etc? If your "main pain" is dissimilar, then hopefully your dr. will review it as a unique & separate issue. Is your pain mainly in joints (just curious)?

What "Never" says about Plaquenil (etc.) being a scary idea BEFORE your drs. are sure what everything means: that makes huge sense to me, also. My drs. wouldn't treat me for anything until they confirmed their theories; and with only lupus, I'm simple in comparison.

Have you met anyone else with CVID? Better yet, with CVID and some autoimmune that could bring on similar symptoms to what you've described?

Thinking of you & sending best wishes, Vee

 
Old 10-03-2010, 02:16 PM   #9
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Re: Can't take ANA PLEASE help

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Thank you neveragain....I don't think it was valley fever either there were NO SPORES found with the lung biopsy. Get chest ct's every 3months all resolved except 3 new spots....Thats when the infectious disease doc started saying no. I still have a stinking fever lol I haven't spoken to him. I called him crying (picture the ugly cry) after NO ONE at Kaiser would see me, my hair fallin out, purple skin, blistered eyeballs all of it. He said come in and I'll start you on prednisone. His office refused to see me without my co-pay, wouldn't take a post dated check, would not work with me, he even said no. I had been seeing him for 2 yrs and he refused to see me over $25? So he's no better than Kaiser. I had been given a very bad med by rheumy (nortryptalene) and i don't tolerate antidepressants well and told his nurse OFF and have never been back Jerk.
Well what does he think those spots are then? Cause you should not have spots on your liver. Some offices have a policy that if you don't pay up front, you cannot be seen. I do understand why your mad but I don't think you should let that stop you from going back. Nortriptyline has uses other than treating depression, it can treat chronic nerve pain, fibromyalgia type pain, and is supposed to help you sleep better. I wouldn't hold it against your rhemy for prescribing that, just tell him you react bad to antidepressants and don't want them as part of your treatment. Lexapro is the only one I have been able to handle, and I love how it keeps me calmed down. Yeah I've had that cry so many times it's not funny, break down right in front of my doctors too, don't think I don't. I think the best thing you could do is make them understand your side of it, how you feel, and how frustrating it is not being sure what is going on. Let me define a jerky doctor, one who says oh there is nothing wrong with them, it's all in their head, or one that says you can't come to the ER for chronic pain, or one that decides to make the moves on your hubby while your laying there half dead from a suicide attempt from where he was being abusive toward you, having blocked kidney stones and no one willing to check you out and see what is wrong. UMM ... Still ******* me off. But I know what you mean. I also know that I get frustrated with my doctor, and most of the time, I am the one to blame for it. He's probably the sweetest doctor you could ask for, so adorable, but shoot I still don't get what I want. I don't communicate with him well and I don't ask so I usually don't get what I want, I just expect him to do it if it needs done, and he trys to help, but if I have something wrong, I want answers, not medication. He assumes it's my fibromyalgia I'm sure, and I always assume it's something else. I get frustrated as hell sometimes. If your doctors haven't treated you in an unkind way, I'd go back to them and just try to open up the communication better, they don't know how frustrated your feeling unless you talk to them. And I would not go on plaquenil without talking to my rhematologist first, whoever treats your CVID needs to make that decision.

 
Old 10-03-2010, 06:25 PM   #10
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Re: Can't take ANA PLEASE help

Kelli, I read even more about CVID and saw that polyarthritis is common in patients "not receiving optimal immunoglobulin therapy". Large joints are typically affected; knees, ankles, elbows, and wrists.

I also read that bronchial tree scars can occur from the lung infections that are so common in CVID.

While I can see that some of your symptoms look & feel very auto-immune-ish, yet maybe they aren't?

In your shoes I'd review literally everything about CVID I could find. Have you found comprehensive reading material about it? My main question would be, How do you know if your therapy is "optimal"? Is that when certain blood values normalize and you aren't getting new infections & symptoms? if arthritis is common (as I just read), is it treated with separate meds? And does your dr. adjust your therapy in response to new symptoms & labs?

I hope something above helps you form new questions to discuss with your dr. You said they suggested seeing another dr. 3 hours away. But if that dr. is more knowledgeable about CVID, maybe one trip would be useful, to re-evaluate everything & perhaps make changes to your therapy, as long as you weren't tied to that dr. long-term, that is. All my best, Vee

 
Old 10-04-2010, 06:11 AM   #11
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Re: Can't take ANA PLEASE help

Quote:
Originally Posted by neveragain444 View Post
There is the possibility that where you have CVID, that plaquenil would just make you feel worse. You really don't want medications to suppress your immune system since you are deficient. So even if you did turn out having Lupus, it could make your treatment difficult.

What I would do for starters is go back to the infectious disease doc and have him properly evaluate you for valley fever. They can do a sputum smear or culture and check for the presence of coccidioides organisms. They can also do an x-ray and look at your lungs. I would go back for a more definitive diagnosis, this condition can also weaken your immune system.

It's not just your doctors. Any doctor you go to, most are going to be like that. Very few go that extra mile to do whatever it takes to find out what is wrong with you. If you want something bad enough, you just have to demand it, they usually aren't going to offer even if it's something that needs done. Try not to let yourself get all frustrated over it.
They did a lung biopsy when the spots came up on the ct scan. No spores were found. I also have ct scans every 90 days. Infectious disease initially agreed with diagnosis but then towards the end kept saying its not valley fever its not valley fever. Ok but my regular docs with insurance company will not listen.

 
Old 10-04-2010, 06:16 AM   #12
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Re: Can't take ANA PLEASE help

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Kelli, I read even more about CVID and saw that polyarthritis is common in patients "not receiving optimal immunoglobulin therapy". Large joints are typically affected; knees, ankles, elbows, and wrists.

I also read that bronchial tree scars can occur from the lung infections that are so common in CVID.

While I can see that some of your symptoms look & feel very auto-immune-ish, yet maybe they aren't?

In your shoes I'd review literally everything about CVID I could find. Have you found comprehensive reading material about it? My main question would be, How do you know if your therapy is "optimal"? Is that when certain blood values normalize and you aren't getting new infections & symptoms? if arthritis is common (as I just read), is it treated with separate meds? And does your dr. adjust your therapy in response to new symptoms & labs?

I hope something above helps you form new questions to discuss with your dr. You said they suggested seeing another dr. 3 hours away. But if that dr. is more knowledgeable about CVID, maybe one trip would be useful, to re-evaluate everything & perhaps make changes to your therapy, as long as you weren't tied to that dr. long-term, that is. All my best, Vee
Hi Veej, yes I have had poly arthritis for 2 years. This pain is new and very bad. Muscular and makes with joints 5x worse. I can't sit, stand, walk, everything hurts, cant' turn my neck to change lanes in a car. And I am getting optimal IgG, I never get sick anymore which is awesome. I've had cvid for a couple years now. I want my levels UP so hopefully that will help with energy level. Lots of people with cvid get differenty types of lung issues, mine is called interstitial lung disease. The new symptoms are not CVID:

Hair falling out
widespread pain (pain level 7)
purple-ish skin - oh someone asked - it looks very spider webby. Almost like I am really really cold.
Spots/blisters on my eyeballs

CVID does cause some additional ruckus but its IBS, arthritis and such. Not what I am experiencing now.

 
Old 10-04-2010, 06:22 AM   #13
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Re: Can't take ANA PLEASE help

Quote:
Originally Posted by neveragain444 View Post
Well what does he think those spots are then? Cause you should not have spots on your liver. Some offices have a policy that if you don't pay up front, you cannot be seen. I do understand why your mad but I don't think you should let that stop you from going back. Nortriptyline has uses other than treating depression, it can treat chronic nerve pain, fibromyalgia type pain, and is supposed to help you sleep better. I wouldn't hold it against your rhemy for prescribing that, just tell him you react bad to antidepressants and don't want them as part of your treatment. Lexapro is the only one I have been able to handle, and I love how it keeps me calmed down. Yeah I've had that cry so many times it's not funny, break down right in front of my doctors too, don't think I don't. I think the best thing you could do is make them understand your side of it, how you feel, and how frustrating it is not being sure what is going on. Let me define a jerky doctor, one who says oh there is nothing wrong with them, it's all in their head, or one that says you can't come to the ER for chronic pain, or one that decides to make the moves on your hubby while your laying there half dead from a suicide attempt from where he was being abusive toward you, having blocked kidney stones and no one willing to check you out and see what is wrong. UMM ... Still ******* me off. But I know what you mean. I also know that I get frustrated with my doctor, and most of the time, I am the one to blame for it. He's probably the sweetest doctor you could ask for, so adorable, but shoot I still don't get what I want. I don't communicate with him well and I don't ask so I usually don't get what I want, I just expect him to do it if it needs done, and he trys to help, but if I have something wrong, I want answers, not medication. He assumes it's my fibromyalgia I'm sure, and I always assume it's something else. I get frustrated as hell sometimes. If your doctors haven't treated you in an unkind way, I'd go back to them and just try to open up the communication better, they don't know how frustrated your feeling unless you talk to them. And I would not go on plaquenil without talking to my rhematologist first, whoever treats your CVID needs to make that decision.
Neveragain- oh no I don't hold it against my rheumy for prescribing the nortyrptalene at all. I cannot tolerate any AD's, I have always been that way. What I am frustrated with is that he will not listen about making antibodies. I CANT MAKE THEM lol so there are things he is giving me a difinitive NEGATIVE on because he is convinced I can make antibodies now and test positive.

I see a specialist at Kaiser Sunset today. **** I hope he can help me.

I am so sorry about the crap you went through with your care I would still be ****** off too lol

Thank you all. Hopefully this guy will have experience, and care

 
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