Should I See A Rheumatologist?

[lynnelise]

I have a previous post that describes the symptoms I am having here:

I'm still waiting for my follow-up on the Immunology tests but honestly don't expect them to show anything amiss.

My June 29th bloodwork shows my ANA, SED rate, RF, and thyroid and all were perfectly normal. My symptoms most closely match lupus, but I've been told with a negative ANA that it's not a possible cause of my issues. My doctor has jotted down my issue as arthralgia (simply joint pain, which is an issue but honestly the least of my issues). In the past I've also had an MRI on my lower back, x-rays on my hips and hands...all normal/inconclusive (in some cases the bone density was too high to see anything). She has suggested my next step would be a referal to a rheumatologist. My question is will this just be another dead end and a huge waste of time and money or should I make the appointment. With a negative ANA and RF plus normal x-rays will they even take me seriously. I can't handle another doctor acting like I'm wasting their time.

I don't want, nor do I take, pain pills. I'm not trying to score a disability check. I just want to be taken seriously and find out why I feel like I have the flu (minus the cold symptoms) pretty much every single day of my life. It's getting worse and it's affecting my work, relationships, and my ability to do housework. I just feel like if another doctor brushes me off I will be forced to give up. Maybe this is normal for me and I need to just suck it up and get used to it.

[mushroom]

I have negative ANA and RF, but that does not mean that I don't have psoriatic arthritis. There are sero-negative forms of rheumatoid arthritis. There is no way of knowing if any given rheumatologist will be able to help you with your problems but if you can find the money to do it I think it is certainly an avenue worth exploring, since you are striking out everywhere else. You may have fibromyalgia, you may have CFS -- many symptoms go undiagnosed because they do not fit common patterns and you just have to keep plugging away until you find an answer.

I wish you got luck in getting a solid diagnosis.

[beachbirdie]

I have a previous post that describes the symptoms I am having here:

I'm still waiting for my follow-up on the Immunology tests but honestly don't expect them to show anything amiss.

My June 29th bloodwork shows my ANA, SED rate, RF, and thyroid and all were perfectly normal. My symptoms most closely match lupus, but I've been told with a negative ANA that it's not a possible cause of my issues. My doctor has jotted down my issue as arthralgia (simply joint pain, which is an issue but honestly the least of my issues). In the past I've also had an MRI on my lower back, x-rays on my hips and hands...all normal/inconclusive (in some cases the bone density was too high to see anything). She has suggested my next step would be a referal to a rheumatologist. My question is will this just be another dead end and a huge waste of time and money or should I make the appointment. With a negative ANA and RF plus normal x-rays will they even take me seriously. I can't handle another doctor acting like I'm wasting their time.

I don't want, nor do I take, pain pills. I'm not trying to score a disability check. I just want to be taken seriously and find out why I feel like I have the flu (minus the cold symptoms) pretty much every single day of my life. It's getting worse and it's affecting my work, relationships, and my ability to do housework. I just feel like if another doctor brushes me off I will be forced to give up. Maybe this is normal for me and I need to just suck it up and get used to it.

Do you have the results of your lab tests? The information can be helpful. When the doctor's office says you are "perfectly normal" what do they mean? You could be at the very edge of their normal range, and that may not be the place that works for your body.

When I first got sick with thyroid, they told me I was "perfectly normal". But I had a high TSH, within .5 of the top of the range, and I had a .8 FT4, which was the absolute BOTTOM of the range. They didn't care that I had ALL the classic symptoms of thyroid disease, what I felt didn't matter.

The problem with docs is, even if labs show you are progressing towards greater sickness, they won't intervene until you are seriously ill and damaged.

Best,

beachbirdie

[GlutenFreeManna]

Have you tried eliminating other foods besides just gluten? Soy makes me very fatigued. I can not get out of bed most days if I eat soy and I get sick more often too. If you are having joint pain a lot of people also find eliminating nightshades helps. I also agree with the previous poster about getting the test results and reading them for yourself. My thyroid is borderline hypothyroid. It's not yet enough that they will diagnose me or give me pills but I believe it's what makes it harder for me to exercise. I have been trying to exercise for longer than 30 mintues a day for about 6 months now. My dr wants me doing an hour a day to lose weight. I worked my way up to 30 minutes of walking. If I do longer than that though I'll be exhausted and unable to workout for the rest of the week. Anyway, my point is if I had not looked at the numbers for myself I would have just been listening to the dr telling me that I was "normal", instead of knowing that I am borderline. I've been tested for years though and been able to see the steady increase of my TSH.

[lynnelise]

The RF, SED rate, and Creatine Kinase are all in low/middle of the range. As for thyroid my TSH is 2.14 (range .45-4.5). Last year it was 3 so that has improved.

My doctor pretty much told me that there is nothing else she can do but send me to the rheumatologist, though she admits that he probably won't help either. She said I probably have something simmering issue that will eventually show up in bloodwork but that could take YEARS!!! Or I have OA. Personally, I don't think OA would explain the fatigue, rashes, lack of stamina, constant sore throat, or swollen lymph nodes.

GFM: I don't eat much soy. I'm sure I get traces of it in the few processed foods I eat. I have soy milk in coffee once a week because I have a slight coffee allergy that is worse with real milk. I don't notice feeling any better or worse after the soy milk.

I guess I need an elimination diet to see if that would help. Honestly I'm so down I'm starting to wonder if the 2 years on the gluten free diet have been worth it. My stomach has improved but nothing else. I know I'm just being irrational right now though.

[GlutenFreeManna]

The RF, SED rate, and Creatine Kinase are all in low/middle of the range. As for thyroid my TSH is 2.14 (range .45-4.5). Last year it was 3 so that has improved.

My doctor pretty much told me that there is nothing else she can do but send me to the rheumatologist, though she admits that he probably won't help either. She said I probably have something simmering issue that will eventually show up in bloodwork but that could take YEARS!!! Or I have OA. Personally, I don't think OA would explain the fatigue, rashes, lack of stamina, constant sore throat, or swollen lymph nodes.

GFM: I don't eat much soy. I'm sure I get traces of it in the few processed foods I eat. I have soy milk in coffee once a week because I have a slight coffee allergy that is worse with real milk. I don't notice feeling any better or worse after the soy milk.

I guess I need an elimination diet to see if that would help. Honestly I'm so down I'm starting to wonder if the 2 years on the gluten free diet have been worth it. My stomach has improved but nothing else. I know I'm just being irrational right now though.

Wait, you have a coffee allergy but you still drink it? What?!? Why don't you try cutting out coffee? I know the caffiene is very addictive and hard to give up but this is your health we're talking about.

And about soy, unless you are making everything from scratch or you are living outside the US you would be surprised where it shows up. I have had to look for it in everything from tuna to tea to chocolate to lunch meat.

[Takala]

I read your previous post.

You really do have something going on there.

Did you have anyone test you for lyme disease ?

Are you taking birth control pills or lots of over the counter anti inflammatory meds, such as naprosen or ibuprofen (aleve or advil) ? The artificial progesterone and those otc meds in large amounts can cause physical depression and it's like getting hit with a truck every am.

You may have to get rid of soy, and please stop drinking it ! Use coconut milk.

Exercise. That's crazy you are trying to do that every day. You need to go to an every other day schedule. You should have these soft days where you just walk for maybe 10 minutes and then stretch or yoga gently.

I have not had good luck with rheumatologists at all. I was diagnosed with arthritis and cervical stenosis back in early 1980's. For a while I had a competent doctor who acknowledged that "yes, this person in spite of her age/gender has this form of arthritis which is giving her hell." I was also just not good on strong doses of anti inflammatories, because of my kidneys. I cannot take enough Tylenol, either, for it to to anything except make my liver unhappy, so why bother. Then we moved to another state and picked up an HMO for awhile for insurance, I had more symptoms/complications which I expected to be at least acknowledged and dealt with on an ongoing basis, as I had the earlier diagnosis from several docs in the previous state - nope, I have never met such stupid, malicious *****s in all of my life, including the ones who were not keen to treat lung infections that were giving me asthma attacks. Hey, docs, people with sjogren's don't get over colds as easily as a normal person, and don't tell me I don't have it. I thought going to a rheumatologist (and good luck getting THAT appt, who says there is no rationing in the US) would at least force them to acknowledge that I had my disease - nope. I don't know why they have you fill out patient questionaires as nobody bothers to ever read your patient history. I came close to taking a magic marker and actually making a little arrow graffiti on the one x ray which showed abnormalities on my c spine, which I'd had for over 20 years and writing "HEY DOC SEE ANYTHING HERE?" when I had the copy of it. I also switched out of the HMO after the last fiasco, and the next non HMO, PPO "rheumatologist" whose office assured me on the phone was familiar with this, was even worse and told me I couldn't possibly have it because "my knee was not swollen." I was a defective model because I, alas, cannot make certain body parts puff up and stiffen on cue. Oh, and diet and arthritis are not linked. Most of us have heard that one a lot.

Most rheumatologists, since the invention and marketing of the anti TNF biological drugs given by infusions/ injections are just looking for women with the classic rheumatoid arthritis symptoms, so they can start sticking them with $$$$ immune system altering injections once a month, and to **** with the rest of us. Being this screwed up anyway, and by studying the results of people on the arthritis boards who went the Full Monty with the otc and then pharma drug routine, vs. the eccentric Diet and Healthy Eating routine, I concluded that if I wanted to get even sicker and live a shorter lifespan, make a lot of ER trips for gastric bleeding, and end up addicted to several different kinds of anti depressants and painkillers that didn't work anyway, using the Classic American Medical System was the way to go.

I did get part of my life back, when I finally got dosed with the right form of antibiotic to kill this chronic infection I had. But I accept that I have auto immune disease(s) and that I am not going to have normal person stamina. And I work hard enough at this, that a lot of days I can pass for normal, and people don't see the crash days when I recover from the faking the normal. Now I am getting symptoms of my thyroid going out of whack, yet I "test" normal, so who knows how may years I get stuck with this, until it's awful enough to show up on The Sacred Bloodwork, and will I croak first, or get another disease complication. Gee, grandmother and mother had thyroid problems, could there be a family connection? Oh, that's right, nobody reads those patient histories.

I see the researchers are right now contemplating if they can develop some sort of similar use of these types of anti TNF, immune system altering biological drugs so celiacs can just eat gluten again, and I want to laugh that they think insurance is going to pay $24,000 a year to "fix" us to eat grain we are not meant to, when they can't even diagnose and acknowledge us in the first place.

[lynnelise]

Wait, you have a coffee allergy but you still drink it? What?!? Why don't you try cutting out coffee? I know the caffiene is very addictive and hard to give up but this is your health we're talking about.

And about soy, unless you are making everything from scratch or you are living outside the US you would be surprised where it shows up. I have had to look for it in everything from tuna to tea to chocolate to lunch meat.

The allergy is very mild and the only symptoms are that my gums and mouth will tingle...if I drink cold coffee or coffee with regular milk. No reactions to hot coffee with soy. The allergist says it is fine to indulge on occassion so I go to Starbucks once a week and have a coffee. That's all the coffee I drink.

I probably do get a lot more soy than I think. I will do a trial without it and see if it helps.

[lynnelise]

Takala: Thanks for your response. I hate that you've had such trouble too! I'm so frustrated with doctors! I have not been tested for lyme disease. It has been mentioned but I was told it was a difficult process and that unless I knew for sure I had been bitten it wouldn't be of help.

I quit taking birth control two and a half years ago because I was having two periods a month. That still hasn't straightened out completely but they say that is "normal" too. I do not take NSAIDs unless I am having a lot of discomfort because I am prone to gastritis. Tylenol doesn't help much so I don't take it either.

I know exactly what you mean by crash days! It's so hard for me to do anything really active but sometimes I have things I just really want to do! I always pay for it later. My last vacation involved a lot of walking around...got home and broke out with shingles two days later!

I don't have much hope regarding the rheumatologist. There is only one in my area and my aunt sees him. She has RA. She seems to like him ok but says he kind of rushes you through. I'm sure he won't want to take much time to hear my situation considering. My regular doctor told me that she feels sure my issue is autoimmune and probably rheumatologic but that I will just have to suffer through and see if/when my bloodwork provides a diagnoses.

[GlutenFreeManna]

The allergy is very mild and the only symptoms are that my gums and mouth will tingle...if I drink cold coffee or coffee with regular milk. No reactions to hot coffee with soy. The allergist says it is fine to indulge on occassion so I go to Starbucks once a week and have a coffee. That's all the coffee I drink.

I probably do get a lot more soy than I think. I will do a trial without it and see if it helps.

Once a week is not an occaisional indulgence. That's pretty regular for something that you are allergic to. Your immediate reaction may be very mild (or not at all if masked by heat and soy) but the coffee may also be taxing your immune system for the rest of the week and causing all this fatigue. If a doctor told you that it's okay to indulge in some gluten every once in a while would you think it was okay to get pizza every week as a treat? I don't think anyone here would think that was okay (it takes some of us a week to get over a glutening) and that they could be healthy living like that. Maybe I am over-reacting a little because MY allergist told me the opposite--that "mild" allergies can get more serious with time if I keep eating the things I'm allergic to. And that's exactly what happened to me with milk (it started mild and developed into an anaphylactic response) so I feel like alarms are going off and I want to warn you. I'm not trying to be harsh but I can't think of any other way to tell you this except bluntly--you should try dropping it for a few months to see if you improve.