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Tired and confused


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#1 northendpoet

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Posted 26 September 2009 - 12:04 PM

I'm confused, tired, achey, and scared a lot. I've always been healthy until this spring when I suddenly developed gastroparesis. And high blood pressure. I have old spinal injuries that I've lived fine with for years thanks to yoga, stretching, walking and ibuprofen. But when everything else hit, then my back felt like it was welded to my hips and shoulders. Then random joint pain - one day knee, three days elbow. And extreme fatigue. So-tired-I-want-to-cry fatigue. Honestly, some of this started early last year, but I just ignored it and put it all down to menopause. Couldn't ignore it when the stomach stuff started in May. After some other tests, the GI doctor said I also have 'watermelon stomach'. And now chest pain.

I got referred to a rheumatologist who ran tests for autoimmune disorders and all were negative except the C reactive protein. But in looking those tests up, it appears they are not definitive. I'm scared I have scleroderma. I'm scared that whatever it is, it continues to progress and the doctors actually say to me, "don't worry." I would like to know what's going on with my body, and what I can do to help it function better again.

Any thoughts? I don't know where else to turn for input.

Thank you.
Northend Poet

#2 Shelley Ensz

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Posted 26 September 2009 - 12:22 PM

Dear Northend,

Welcome to Sclero Forums. I'm sorry you are sick and have concerns about possible scleroderma. What treatments have you had for watermelon stomach, so far? The anemia from that alone could make you feel truly awful, all around. So I'm wondering if you're getting adequate treatment and follow-up care for it?
Warm Hugs,

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International Scleroderma Network (ISN)
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#3 northendpoet

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Posted 26 September 2009 - 01:04 PM

Shelley,

No treatment for the watermelon stomach. I'm not anemic, and the GI doctor said they won't do the treatment unless or until I bleed or become anemic. I assume it's because the procedure carries some risk, as any procedure does. However, I'm not the "wait until it blows" kind of gal.
So, I am a little concerned and frustrated with the situation.

Do you know, if the ANA and anti SC-70 are negative, does that rule out scleroderma? The rhuemotologist said it does but added that "it doesn't mean you couldn't have something like that in 5 years..." I don't know what that means. Can it take years to have a positive test? Can it be positive and then negative depending on current symptoms???

I have a cousin with lupus who had negative blood tests for years, was told to quit stressing, and was given Xanax and antidepressants. She ended up in cardiac arrest at age 37 and THEN got a lupus diagnosis confirmed. I don't want to go there.

I feel like some kind of autoimmune process is going on, and I just don't know where else to look for solutions. I've done 2x weekly acupuncture since June and it has helped. Unfortunately, my insurance doesn't cover it. Yesterday I consulted with a naturopath. (That wasn't what I thought it would be.) She wants to see me 2x weekly for 10 weeks, but I can't afford it because my insurance doesn't cover her, either.

Would love to know more about what to beleive, how to feel better again.

Northend Poet
Northend Poet

#4 sandra

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Posted 26 September 2009 - 07:29 PM

Hello,
And welcome you're on the best site for support right here! I have read your concerns and I too have Watermelon Stomach the bleeding & anemic. I was relieved to hear "no bleeding" that's a good thing trust me & even better not anemic. You have had a Doctors opinion, if it were me I would get another opinion, from a Specialist just to settle my own concerns, and maybe get a clear "explanation" or "diagnosis." I understand you're new with these symptoms.

You might feel a little better knowing that people can have Watermelon Stomach all their lives and not even know it, so No bleeding lines, is good news, otherwise that's when a Doctor will treat it. I call it a dormant stage that can stay that way for life and may never develop. I will keep my fingers crossed for you, mine is bleeding and I am Anemic, and it can be controlled, and I have accepted it, and living my life with it. Please try to stay calm and think about getting another opinion, and if you still have concerns , get a third opinion, I am a little bit extreme , I had 5 opinions! But that's what it took for me to fully believe and begin to understand the diagnosis. I read all the negative articles on the net and scared myself and my husband half to death! People don't write the positive things- it wouldn't make for good reading would it?

Stay comfortable and find a trusting Doctor that will care for you.
You have a caring group with us here, 24 hours a day, we support each other, stay calm, and let us know how you are doing.
Keep in touch,

#5 Sheryl

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Posted 27 September 2009 - 01:31 AM

Welcome to our ISN forums Northendpoet.
You have come to the right place to learn and ask your questions. Many doctors today don't seem to what to make a diagnosis in our charts for some reason. It can take a few years for symptoms to fall into place enough for you to be given a name for your illness. Some doctor's have only seen a couple severe cases in their lives or none at all. So, they are on a fact finding hunt the same as yourself. Doctor's just want to deal with the issues at hand sometimes and don't see the overall picture until enough symptoms fall into place. Keep working out and using your energy to strengthen your body. Fatigue is something we are all dealing with on a daily, weekly or monthly basis. Keep learning and you will have a heads up when symptoms start to arise. Many people here in the forum have negative results and still have Scleroderma or Lupus. Sometimes positive results are when a person is in a big flare up of some sort. So don't worry about results. Go with how you are feeling. Write things down and when you have appointments you can bring up these symptoms to your physician. I am off to play a bit of tennis this morning. Catch you later today.
Strength and Warmth,
Sheryl

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#6 Snowbird

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Posted 27 September 2009 - 04:16 AM

Hi Northend Poet

Sorry to hear you are having a hard time...I agree with the others too.

To answer your question, I was told that Blood work alone cannot diagnose scleroderma...a person also needs to have active symptoms present as well. For example, with Limited CREST Scleroderma, one would need blood work plus at least 2 of these symptoms (C, Calcinosis, R, Raynaud's Phenomenon, E, Esophogeal Dismotility, S, Sterodactyly, T, telangiectasias)...hope this helps answer your question. But...just to confuse things some more, people can have these symptoms although the blood work may never show positive...my rheumatologist told me that once it shows, it shows which means they have something to go on to help put the puzzle pieces together down the road (if there are any symptoms). So, I'm not certain but I think that means it doesn't matter if the blood results go up and down in activity because it is there. Also...sometimes nothing ever progresses further than it is because no 2 people are alike...and that can happen too, which is a good thing.

So, in a nut shell, it sounds to me like your rheumatologist is just saying that he can't diagnose you with anything yet because he does not have enough symptoms to put the puzzle together. It is important to treat any symptom (no matter what is causing it)...and it can take many years to put 2 and 2 together to figure that out. I think if the bloodwork shows, then it just gives them a better idea of what to look for.

It's important to have a good doctor that you are comfortable with and trust no matter what is wrong... :)

Take care and hope you keep us updated.
Sending good wishes your way!

#7 debonair susie

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Posted 29 September 2009 - 06:04 AM

Hi northendpoet,

I am SO glad you have come here for support and information, both of which should give you greater comfort.

Yet, I am sorry you are having the symptoms and pain you are.

You spoke of high blood pressure - are you being treated for it? If not, it would be prudent for you to ask about
BP medication. Hopefully, you are also able to get something to help with your pain. When in pain, it's difficult
to get the proper rest we need.

Please take care and keep us posted on how you are doing?
In the meantime, here are some {{{Soft and Gentle Hugs}}} to tide you over.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#8 Penny

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Posted 30 September 2009 - 02:14 AM

Hello there, NorthEndPoet,

First off I want to welcome you here... if you are looking for people that care and are willing to stand by you as you walk through the maze of testing and offer a shoulder on the bad days then you have come to the right place.

Gastroparesis in itself can be a major challenge since so many of the symptoms can be contradictory (symptoms can be : weight loss or weight gain, diarrhea or constipation... in other words both ends of the extreme) and having a stomach that does not digest foods means often that it does not digest medications as well, making it that much harder to control conditions. This does not mean that it cannot be done... but alternate ways of treating conditions need to be looked into.

There are patches on the market for blood pressure medications, and I have even heard that there are supositories available (which I am looking into since I have non-emotional labile hypertension and am allergic to adhesives so patches are out).

If you have not yet been to a tertiary hospital (John Hopkins, Mayo or another specialty hospital) then you might want to discuss with your doctor going to one to have your stomach issues evaluated fully and a treatment plan instigated as well as having the specialized testing needed to get to the bottom of your total body health.

I am not saying that your stomach issues are the only thing you need to look into, but you need to be able to take in calories and nutrients in order to have the strength needed to deal with everything else so it is often a good first step.

There are also diets that are specific to gastroparesis, foods to avoid since they are harder to digest and move along and ways to aid digestion so that what you do eat works for you and not against you.

#9 northendpoet

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Posted 30 September 2009 - 04:38 AM

Penny,

Thanks for the info and the support. The gastroparesis has gone from so painful that I can see how people with it could become food aversive (hard to eat or drink when it makes pain!), to a much milder and easy to control condition. First round my labs were off (really low protein and slightly low sodium), probably because of diarrhea for weeks. At the same time I had my first bout of diverticulitis. I think (now) that was probably because of bacteria from the food not moving. These days I drink 1-2 protein drinks per day that have 30 grams of protein in them. And I eat every hour or two - yogurt, creamed spinach, protein bars, fruit, lots of pasta, etc. My weight is almost back to normal. I have to be careful not to each too much, or too late at night. And I can always tell you exactly where my food is. And I'm hoping that at some point I'll never burp again. The burping got old months ago! I know frat boys who guzzle beer and don't burp this much! I get crazy, random pains all over my abdomen but they don't interfere with my job or my functioning, they're very transitory. When I think of what it was like the first 2 months, I'm very grateful for my stomach today.

I would love to go to the Mayo clinic and see if I could get better diagnosis and a doctor who might actually talk to me and give me information. So far everything I've learned I've learned in books and medical search engines. Also, since my daughter moved to Rochester last spring, I'd have a double reason to be there. But it would mean telling her more. I finally told my little sister yesterday what I think this is all about. Didn't want to worry anyone needlessly or be hovered over or treated like I'm sick. I just want answers, a plan and then get on with my life. I feel like the deal with finding the right diagnosis is mostly this: how much do I continue to save for retirement, how much more focus might put on spending and enjoying that money now?

Does it just take a referral from my primary care physician and a plane ticket to get into an MD at the Mayo Clinic? I don't think the gastroparesis is severe enough to warrant the referral, but combined with the watermelon stomach, fatigue, and joint pain, maybe they'd send me to, who? another rhuemotologist? Too bad there are no 'autoimmunologists'. I imagine someday there will be.

I'll look forward to any info you have. And thank you again, everyone, for the support and the understanding. Feels good.

Northend Poet
Northend Poet

#10 Penny

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Posted 30 September 2009 - 01:48 PM

Northend Poet,

The easiest way to get into the Mayo is for your Primary Care physician to refer you there through the physicians referral system they have (that way they can have a copy of your tests and medical records and review them before they see you) but you can also try contacting them yourself because they will take patients on a case by case basis. When you go to a tertiary hospital they tend to have a team of Dr's waiting and they test you from top to bottom with Rheumatologists, Endocrinologists, Immunologists, Cardiologists, Gastrointerologists, Neurologists... lets just say that if there is an 'ologist' there you will probably see them.

Gastroparesis is actually not a rare condition, but it is probably one of those misdiagnosed and under-diagnosed conditions when it comes to abdominal issues, which is sad when it takes a very simple test (the gastric emptying test) to find it. The problem is that once the condition is found most Dr's have no idea what to do about it. There are medications out there, but they can be very hard on the body and there are proceedures such as botox injections to the stomach and gastric pacemakers that can be tried. Some Dr's may brush off gastroparesis as a 'mild' condition that people just have to deal with, but it is a condition that does need investigation and tertiary hospitals (such as the Mayo) actually see many gastroparesis patients and their Dr's are tops in the feild.

When it comes to deciding how much to share with family and when to tell your family, that is a personal decision and I fully understand the feeling that you do not want them hovering over you and worrying about you. You might want to give small hints and maybe a little 'light' information (such as 'I have been having some stomach issues and you remember my old back issues, well, they just want to make sure everything is okay') so that they are not left totally out of the loop yet at the same time you do not feel crowded with good intentions.