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Got my test results


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#1 Penny

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Posted 23 March 2009 - 09:55 AM

Hi everyone,

Well, I am back from the doctor's office and am giving up.

My rheumatologist says that the ANA was negative (taking into consideration my family history of Lupus on both sides the ANA was elevated at 1:300 but that was a "false positive".)

She did not schedule the lymph node biopsy because "it is not autoimmune related" and told me good luck and call if I ever need her but she doubts I will.

I wanted to thank everyone for the support they have given me in the time I have been here, but I have come to the conclusion that it must be all in my head. I keep getting elevated test results that are not high enough to be considered anything from endocrinologists, nephrologists and now the rheumatologist.

To add insult to injury, my Workman's Comp called asking when I can schedule the amputation of my foot, but since I can't keep any medications down I cannot be cleared for surgery and they think I am just being stubborn and they are threatening to discontinue all treatment because I am being 'non-compliant'.

I just give up. I am crazy, a hypochondriac, whatever. I don't have it in me to fight anymore and have no clue what to do even if I wanted to fight anymore. My internist said he would call the referral line at John Hopkins, but he has not done so and I doubt he ever will, and they will not see me without him referring me.

Penny

#2 Jeannie McClelland

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Posted 23 March 2009 - 02:42 PM

Oh Penny, you are in such good company here! We're all a little bit crazy.

I think I would refer the Workmen's Comp people to the doctor who won't clear you for surgery and then if they still are making noises about stopping treatment, whisper the magic words 'abandonment of care' and 'legal action' in their shell-like ears!

As far as the referral to Johns Hopkins goes, I'd put the request in writing to your internist, reminding him that he said he would call, and send it certified, proof of delivery required. Once you have the confirmation of delivery, start phoning every other day. The squeaky wheel gets greased! :lol:

I'm sending you lots of virtual hugs.
Jeannie McClelland
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#3 Penny

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Posted 23 March 2009 - 09:39 PM

Just a note...

I called an oncologist and begged and cried and made a royal pain of myself on the phone blubbering and they will see me on Friday.

Usually they insist that a doctor refer you, even though my insurance does not insist on a referral but I am getting nowhere with doctors and need to have those lymph nodes checked (more have popped up, hard and painless and I have now discovered one on the other side), so through the magic of sobbing and begging I got them to agree to see me.

I have to get all my doctors' notes and records for the past 6 months to take with me or they won't see me and that might be a challenge, but I am going to do my best.

Jeannie,

I am going to start squeaking like a mouse after a double expresso and try to get him to do what he said he was going to do.

Thank you so much for the hugs. :D

As for Workman's comp, I am going to call my lawyer in the morning and let him take care of it. After all, that is what he is supposed to be there for and I just do not have it in me to fight with them right now.

Warm hugs,

Penny

#4 JANQ

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Posted 24 March 2009 - 01:02 AM

Hi Penny:

It is time for a big huge ((((Hug)))!!

The Penny that we all know and love here doesn't give up!! You have been one of the most uplifting, supportive members, and I think we won't allow you to be discouraged!! It is our turn to cheer for Penny!

This road is so up and down, and we all know that if you find a doctor who isn't listening, it is time to change. (Yes, I've learned!) Symptoms are not all in your head!!

I found a wonderful internist who ordered the tests that were strongly indicative of autoimmune. She had the Reflexive Antinuclear Antibody Profile run on me which indicated a positive ANA, and an elevated dsDNA Autoantibody of 23, anything greater than or equal to 10 is positive. Did your rheumatologist run this profile for you? Also, in my White Blood Cell Differential Count, my EOS (eosinophils) was 16.7, normal range 0-5. She told me these were high positives and along with my symptoms indicated Lupus or another autoimmune disease. I believe that you can ask for specific tests, if anybody knows differently, please correct me. Please try to find a doctor who will listen to you, run the tests that you need, but also remember that the tests can never diagnose alone, whether positive or negative, the doctors have to be listening to the one person who knows his or her symptoms and body the best.

Good for you, Penny, on taking the initiative to call an oncologist on your own!! And for having your lawyer work for you regarding your Worker's Comp. I am going to be sending big wishes your way that both of these issues work out on your behalf!!

Keep fighting, Penny! We are here for you!!

(((Warm and gentle hugs!!)))

Janet

#5 Shelley Ensz

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Posted 24 March 2009 - 01:19 AM

Hi Penny,

I have to admit, I've lost track of everything that is going on with your health care. But I'm glad you are marshaling your forces again and have enlisted your lawyer and another doctor to help.

Why don't you call Johns Hopkins yourself and just ask if you can get an appointment? I know Mayo Clinic accepts self-referrals, when insurance does not require it. In fact, they often have people just show up and sit in the lobby, waiting for the next available opening. Sometimes they wait a few days but at least they get seen eventually. I don't know if Hopkins works that way or not, but it would at least be worth a call.

If you can't take medications orally, for any reason at all, have you suggested they be given to you by I.V.?
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 RememberingToSmile

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Posted 24 March 2009 - 02:15 AM

When my primary doctor and I decided to contact Hopkins, she told me she would fax all the information to them, but to go ahead and do it myself, too. That way there would be less of a chance that all the doctor/lab reports would be lost or misplaced...

Good luck and stay strong. RTS

#7 Peggy

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Posted 24 March 2009 - 05:21 AM

I know how frustrating it can be to try and be "heard". It took me a year of going from doctor to doctor, specialist after specialist, until I finally got in front of a neurologist who took me seriously, believed in what he was seeing and was so insistent on "putting the puzzle pieces together". That's all it takes... to get in front of just one person who will take you seriously. At one point in time my own general doctor said I should probably see a psychiatrist! Now I have 6 different autoimmune diseases and am a real mess. All I knew was that I wasn't going to give up because I knew something was wrong. You are your own best advocate and you just have to stay in the fight. Eventually someone will be able to help you! Please, please don't give up.

Warm hugs,

Peggy

#8 debonair susie

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Posted 24 March 2009 - 10:09 AM

Now THAT'S the Penny I know and love!

When I read your opening post, I nearly dropped the false teeth...that I don't have! For "Our Ppbb" to say what "she" said and not come out of the henhouse fighting like our "Little Redheaded Jeannie" (also loved by many here!)... I really thought "someone" had commandeered your computer!!!

Atta Girl, Penny...I am so glad you are shaking things up and on your way to getting the answers you long for...and so deserve!

Keep us posted, okay?
Special Hugs,

Susie Kraft
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#9 Sweet

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Posted 25 March 2009 - 04:57 AM

Hi Penny,

My heart went out to you when I read your first post, and I was going to beg you to NOT give up. I read down further and was elated you were going to fight fight fight. You go girl! Sometimes it takes us pushing and putting pressure on the medical community until they finally work hard enough for us. Please don't give up, take one day at a time and push forward!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Penny

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Posted 25 March 2009 - 07:41 AM

Hi, everyone and thank you all so much for the hugs and support!!!!!

I just finished the "battle of the records" and came out on the winning team! I say winning team, because for a while there I thought I would have to cancel my oncologist appointment because they were refusing to give me my medical records (the Internist I am soon to replace) and without the records the oncologist would not see me. I got off the phone and was ready to head back to my pitty party for another cookie when I thought about all of you behind me and called back for one more try.

They would not send me my records, or fax them to me. But after spouting HIPAA regulations and explaining to the office manager why they were needed by Friday they agreed to fax them straight to the oncologist's office!

Unfortunately, the response about the referral call to John Hopkins was the same old "the doctor will do that today" answer I always get and other than dialing the phone for him and pressing it to his ear there is not much I can do. (I might just do that soon).

RememberingToSmile- I had written John Hopkins a detailed e-mail and their response was (cut and pasted from the response) "Good Afternoon,

Thank you for contacting Johns Hopkins for your medical needs. Due to the complexity of your medical needs, please have your Primary Care physician refer you through our Hopkins Access Line. This is a Physician to Physician line that will work out the protocal to have you come to Johns Hopkins. The telephone number is (not posting the number on an open forum)". I will soon have a new Primary that will hopefully do that.

Shelley- no one has ever offered me the blood pressure, heart rate and thyroid medication by IV at home, I will have to ask about it, but since I am allergic to adhesives (like tape) I am not sure if it would be an option on a daily basis. It is still worth asking about though and I thank you for the suggestion.

I just wanted to let everyone know just how much your undying support means to me and the strength it gives me to fight on for some answers!

Warm tearful hugs to everyone, good tears, not bad ones!

Penny

#11 Shelley Ensz

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Posted 25 March 2009 - 08:26 AM

Hi Penny,

Congratulations on the progress you are making with your medical care! You are setting a good example for us to all be more proactive in seeing that our medical needs are met.

Okay, here we go again: I'm not a doctor, I have no medical training at all, just enough to be dangerous in the front line at the pharmacy. :blink:
Since you can't tolerate swallowing those meds, have your doctors worked with you on alternative approaches? For example, there is a Resperate machine that has passed clinical trials for lowering blood pressure; it works as a breathing coach and shows excellent results. I'm not sure, but it might also help with heart rate (at least it would seem so). I also use hibiscus tea, prescribed by my doctor, for lowering my blood pressure, and it works better than the blood pressure medications that I was on. You would have to consult your doctor for advice on that. It's certainly not as easy as taking a pill (I need to brew mine for 30 minutes and take it 3 times a day) but there are no side effects, well, other than lowering blood pressure and acting as a gentle diuretic. It has also passed clinical trials. (Both of these items are still waiting for me to add to our main site, so trust me guys, it is okay for me to mention them here.)

For thyroid, I happen to take Armour thyroid. An interesting thing about it is that I take a small tab, 3 times a day, and I melt them underneath my tongue, which makes for better absorption. And I really like it because it has a very pleasant flavor so it is like a candy for me and I always look forward to it (with my fancy dancy specially brewed hibiscus tea).

Perhaps none of these ideas will work, if so, I'm sorry, but I'm just trying to think outside the box to see if you can regain status as a "compliant patient" as long as you meet the end goals, of properly containing your blood pressure, heart rate, and thyroid status.

If your doctors aren't willing to work with you on this, you can try to see an internist who is a D.O. (doctor of osteopathy). They are fully licensed medical doctors in the U.S. but have additional training in how to also use more natural healing modalities.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 Cher

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Posted 25 March 2009 - 10:40 AM

Hi Penny,

I am sorry you have had a rough time lately. I am glad that you are cutting through some red tape though. I know how hard it is when a doctor brushes you aside and you are made to feel like this is all in your head. Don't give up! Warm thoughts and hugs.

Cher

#13 Kamlesh

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Posted 26 March 2009 - 05:57 PM

Peggy,

I agree with statement “Never give up”.

I had severe acid reflux until last year. The first surgeon said I must be out of my mind to consider surgery. I will be on feeding tube rest of my life with surgery. Second surgeon had similar opinion. Finally, third surgeon, after going through series of tests, agreed to perform surgery. I am so much better.

So, never give up.
Kind regards,

Kamlesh


#14 luvbnmom3

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Posted 27 March 2009 - 06:06 AM

Hi! I was excited to scroll down & learn that you were taking the bull by the horns again! I know how it is when you feel like you've said everything you could say & nobody is listening & taking action...so then you feel like throwing in the towel. Good for you getting back up on your feet & taking them back on!

I enjoyed reading others' comments to you, everyone here provides such wonderful support, from humor to encouragement! Hang in there, I'm anxious to hear how it goes today.

Oh, something I thought I would mention. Rumor has it that when you see a doctor in one area, more often than not they are of the same beliefs as the other doctors in that same area - aware of the same things, at the same level (for the most part). That is why when getting a second opinion, you go as far away as you can...lol! Maybe not that far, but I hear stories all the time where it is always someone far away. One lady had a brain tumor & was told by 3 local doctors (all different offices) that it was inoperable, even if they did try to remove it, she was gaurenteed to lose her sense of smell & likely her vision. She did some research & found a surgeon, one state over, who has done this surgery a number of times with great success. She called & sure enough, they said, no problem! that was a few years ago & she sees great & can smell great! Hang tough!