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#1 jenee

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Posted 09 January 2009 - 01:33 PM

Hi Guys,

I just called your call center and talked to a wonderful lady who suggested I get involved, and share my story. She also made me laugh, thank you :) !!!

I have many questions and am confused!!

My previous history I was healthy and I am 34, I had a thecoma tumor ,which involved my ovary and fallopian tube, removed in May of 2007. My recovery was fast and I was back up to speed by July 2007.

Anyhow, about a year ago, end of October 2007, is when I developed Raynaud's. People remarked on my hands so being weirdly cold, I didn't know what to think, and I tried to ignore it. Before that I was very cold hardy and used to joke it was because I was born in a blizzard in St. Paul, Minnesota.

Then I noticed extreme exercise intolerance (I used to walk on an average of 40 miles a week at rate of 15 minute miles an hour!) My legs felt heavy and hard to move, and my walking speed was decreasing no matter how hard I pushed myself. I have had my legs collapse etc. while running and stuff. I was also getting out of breath much quicker than I normally would. Other people noticed my huffiness and remarked on it. I was embarrassed. I am involved in dog sports or was involved I should say. So I did lot of running etc.

While being active in dog sports is when I discovered my hands were becoming useless, they were stiff and I was dropping my dogs leash without even noticing, that was embarrassing, too.

I would get extremely tired after a walk to the point I would sometimes come back and fall asleep. One thing I did notice is I was yawning and getting sleepy while walking. I thought that was weird.

Also during this time my hands were swelling up and the cold problem in my hands was getting worse. I was having severe cold attacks and developing sores on my fingertips, little cuts would get infected, it was a mess. I still didn't know what was going on. I still don't. :)

Eventually, it got to the point I had a major Raynaud's attack that was so painful I think it took about 45 minutes for my hands to warm up. Well anyhow, my husband said this wasn't normal and said you need to go to a doctor.

So, I find myself getting the next available appointment a week after the event with a physician's assistant (PA). She was the only who could see me, and unfortunately since I was healthy before this, I did not have a regular doctor.

I arrive there and notice my resting pulse rate is 120 which was weird for me, my normal heart rate was 60ish.

So, she does basic tests, and sends me on my way. There are some abnormalities with my electrolytes ( low sodium, low co2 and low normal potassium), an abnormal free T3, but she says that doesn't mean anything since these things fluctuate. I am like okay. She says I think this has to do with your old tumor, which by the way guys is extremely rare, and she sends me back to my NP who diagnosed, or I should say found the tumor in a checkup.

Anyhow, I go to my NP office the next day. I called her to tell her what was going on and she was extremely concerned. So, I arrive there and my blood pressure was high 148/96, I usually have extremely low blood pressure ( 100/60) and my pulse was extremely rapid 140 ish, I was not doing anything extremely physical. I was mildly rushed. :)

She asked me if there was any heart problems in my family, I go, not that I know of. (To be quite frank I knew none of my families medical history.) She said it looked like a heart problem since my ankles were swollen too.

She agrees to check to see if the tumor is back and pleas with me to find a doctor, that she knew this PA, and I need to find someone else with more expertise. Now, people this was weird for me. :) I had no clue what she was talking about.

Anyhow, I get the ultrasound done, and all is normal. My bladder was really active and same with my bowel. As a matter of fact the tech spent some time viewing my bowels, along with my kidneys. My kidneys were good (the tumor had caused moderate hydronephrosis.) So, I was glad to know my kidney recovered itself.

I go back to the PA who says she didn't get the ultrasound report, and stuff, and says well I can't help you. I was floored and probably desperate to as well. So, I told her well my NP GYN thinks its cardiac related, so she does an EKG and a chest x-ray.

The EKG comes up as abnormal, but nothing serious, I frankly think it was operator error since it was done by a Medical Assistant. So I get sent to a cardio doctor who does a exam and heart ultrasound, all is normal.

All this occurred in the end of February.

Anyhow, in the mean time I was trying to find a Internal medicine doctor it took me until the end of July to get one. She comments on my hands being Raynaud's, does not do the nailfold test, and says I livedo reticularis in my legs and arms, hands etc.

She does a complete neurological exam and finds some weakness in my pelvic area and some sensory loss in my feet. She also comments that my femoral pulse (the one at your ankle), I think ,was very weak and hard for her to find.

So, she sends me to the hospital for a ankle-brachial index (ABI) test which was normal. She also tests for Vit b12, folate, ck, aldolase, cbc, kidney, liver etc. All was normal except a high platelate count and a low normal b12 ( 300).

I also in July had a bout of nausea, vomiting, diarrhea, with a severe migraine, and low fever which lasted a week . I thought it was food poisoning.

In the end of November the same thing happened except this time my stools were black with diarrhea.

On December 8 to the18th, I was running a low grade fever of 100.4 and after that it has been anywhere from 99.4 to 99.7. So, I still have a low grade fever.

Then I go to a rheumatologist about the Raynaud's. She pulls out a small loop thing with a light pours some gel on my fingertips, looks at them and then tells me it is secondary Raynaud's. That there is capillary abnormalities. She then tests me for APS, Lupus, Screlo, and RA plus some vascular problems. Oh, she also stated she had primary Raynaud's and that her nailfold is completely normal.

Her exam was very quick and not thorough; she focused on my hands and feet.

So, I go back and all the tests are negative except the Anticardiolipin IgM was inclusive, which she says is negative as well. That if it were APS the numbers would be extremely high.

She agrees to retest since as her report states: She does have evidence of capillary loop paucity and capillary loop dropout. She also has 1-2 small periungual hemorrhages in her left hand involving the third and fourth digits. Her report also states she might have mild livedo reticularis in the palms of her hands.

Anyhow, she prescribed Nifepidine for the Raynauds and I have a follow up in 6 months. Oh, she did remark to me how I have no skin changes and scleroderma patients almost always have skin changes by now.

I am so sorry for this long post, and I am sure it is very hard to read since it is hard for my fingers to type this, and I am sure I left something out. I really need to write everything down in an organized manner.

Anyhow, I will ask questions in a bit. I will really like Janey's help. :)

My hands are tired.

Sincerely,

Jen

#2 Shelley Ensz

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Posted 09 January 2009 - 01:58 PM

Dear Jen,

It was great talking to you this afternoon, and I'm glad I made you laugh. I really needed a belly laugh myself!

I'm glad you quit lurking, finally, and started posting. You can relax now, you've found a good place for information and support and lots of us will be able to relate to what you are going through.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#3 jenee

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Posted 09 January 2009 - 03:12 PM

Hi Shelley,

I didn't get your name and wondered if you were the founder of this site. Anyhow, thank you for the warm welcome.

Oh, I looked through my post and besides the numerous grammatical errors, (sorry about that guys) I did leave out some info I would like to share. Oh I figured out how to use spell check as well.

One thing I never knew was my family's medical history, and while going through this process, I have made several phone calls to relatives to get it.

I discovered my Maternal Grandmother had Rheumatoid Arthritis with mild heart disease, my mother's sister has UCTD with Raynauds and Angina, and my fathers sister had Lupus with seizures she passed away sadly due to heart failure at 55. My fathers father died at 50 from a Pulmonary Embolism. Also, heart disease does run on both sides of the family. My fathers brother has a pacemaker and another one of his brother just had stints put in his arteries.

So heart disease does run on both sides of the family along with rheumatic problems.

I also wanted to add for symptoms, that I also have swallowing problems mainly in the form of liquids going down the wrong way. Also, I have heartburn I really never thought much of it since I imagine everyone probably has heartburn.

I am also hoping to talk to Janey about good doctors in this area, since we are both from the same town.
I am not quite sure if my last line about Janey made sense since my grammar was horrible throughout my first post.

Thank you and I am going peruse this site :)

#4 Sheryl

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Posted 09 January 2009 - 03:30 PM

Gretalclyde welcome to the Sclero Forums. I'm glad you found us and I hope many people will chime in, answering any questions you may have.

Also welcome to everyone who has become a member in the past few weeks that I haven't given a welcome to. I have been busy soaking up the sun here in Florida and working behind the scenes and not making many replies. I hope everyone is finding their way around this great site.

Gretalclyde there are many medicines that can control your itching problems when they become unbearable for you. Ask your doctor for what might work best for you if you need help. Sometimes the creams and lotions just aren't enough.
Strength and Warmth,
Sheryl

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#5 Snowbird

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Posted 09 January 2009 - 04:27 PM

Hi Jen

Just wanted to say hello too.....you've come to the right site to ask all your questions and to find good understanding and moral support. Ask away, I think you will find that there's always someone here that can help.

Sounds like you have alot of things going on and that Janey might be able to help you with a scleroderma specialist too, at least I think that's what you meant....so I'm assuming your current rheumatologist is not a sclero specialist? If you are not fully satisfied with your doctors care, then I would not hesitate to get another opinion if it were me, especially with so much in your family history. Hope you let us know what you decide and how it goes.
Sending good wishes your way!

#6 Jeannie McClelland

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Posted 09 January 2009 - 06:06 PM

Hi Jen,


First of all, welcome to the Forums. You'll find a lot of us who think laughter is by far the best medicine!

I had much the same experience that you did and was eventually diagnosed with systemic sclerosis sine scleroderma. I've got pulmonary hypertension, pulmonary fibrosis, GI stuff, and sicca syndrome. (Itch? Whoo baby... Dry skin? Hah, I carry my own snow storm with me...)

It seems like getting an accurate diagnosis involves presenting with a constellation of symptoms consistent with the disease in question AND presenting them to a rheumatologist who specializes in autoimmune diseases.

Once you do get a diagnosis, then treatment (and education) can begin. Be persistent!! I was initially diagnosed with asthma (wrongo!) and told that if I got rid of my dogs and used a steroid inhaler, I'd be just fine. Uh huh.

You have to be your own best advocate and it sounds like you are capable of that - good for you! We're here to listen, to help, to support, and, my personal favorite, give you the odd laugh. :lol:

Best wishes,
Jeannie McClelland
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#7 jenee

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Posted 09 January 2009 - 08:06 PM

Hi Sheryl,

Thanks for the hello. I don't think I mentioned the itching, but yes I do have that, mainly on my neck, chest, back, face and head and a little bit on my arms. My legs itch the least thankfully. The itching on my neck, head, and face is the worst for me.

What I have found is using no poo shampoo has helped the itching with my head but nothing for the rest of my body. I will be honest I haven't even mentioned that to a doctor because well it seems minor, I don't know.

What do you use for the itching? Where do you guys mainly itch? Is this a precursor to the skin involvement?

Like I said I have no skin involvement except for a small patch on my index finger that is hard, and thick, this patch runs along the outer side of my finger next to my thumb.

When the rheumatologist mentioned the hardened skin etc, being a part of sclero, I said what about this patch here, she looked at it and said I don't know looks like dry skin.

I think the itching may be dry skin I don't know, do you guys have any ideas?

I also have developed red blood spots on my chest about 10 or so and some on my face, but not many.
I have just four on my face within the past few months, One being on my nose which is biggish and I don't like it at all, but I can cover it with makup sort of , the other on my chin ( a very tiny one) and two on my inner lip. The inner lips ones are just a few weeks old. I have not mentioned that to a doctor because I felt it would be weird, but maybe I should. Or should I wait til there are more?

I also get very dry lips.

Anyhow, these are the sort of questions I have and would love help on it.



Jen

#8 Cheryle

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Posted 10 January 2009 - 01:54 AM

Jen,
I'm getting the 'red' spots too. Telangiectasia is what they're called . I'm surprised that Rhumey didn't see those and identify them, but I think she has already convinced herself you didn't have sclero.
Cheryle

#9 LisaBulman

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Posted 10 January 2009 - 02:15 AM

Hi Jen,

Welcome to the forums! I read your first sentence and just knew you spoke to Shelley! Isn't she great?!
You have come to the right place for information, support and friendship. Is your doctor a specialist in sclero? If not you need to find one! Getting a correct diagnosis can be stressful and take a very long time.

Hang in there....we are all here to help you in the meantime.

Hugs,
Lisa
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#10 jenee

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Posted 10 January 2009 - 07:42 AM

Hi Snowbird,

Yes, that is what I meant, I was hoping Janey knew of doctors who are sclero specialists or just a really good experienced rheumatologist.

The spots are mainly on my upper chest and the rheumatologist did not examine my whole body just my hands and feet, and she did a range of motion test for my joints with my clothes on.

I will say the liverdo reticularis she said she saw on my palms looks like pictures of the Telangiectasia I have seen on the internet, but I don't know....

As far as doctors go I thought the rheumatologist was fine, she is pretty young and probably does not have the experience I need. I need a rheumatologist with experience with this who listens to me kinda like my IM primary doctor.

I wish my IM primary doctor had more experience with rheumatoid problems but she doesn't her specialty is neurology.

My IM primary doctor is good, she listens to me and if I make a suggestion she goes with it, so I think that is a good thing. I am happy with her,she isn't perfect, she can be oddly enough a little to thorough.

Oh, also I am an artist, I paint pet portraits it is nice to see other artists here.

Jen

#11 janey

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Posted 10 January 2009 - 07:59 AM

Jen,
Sorry I'm so late in coming to this thread. I had my IVIg treatments this week, so I'm just now recovering and reading this week's posts.

Welcome to the forums! It sounds like you have been through a lot and have already made several discoveries relative to what's going on with your health. Of course, that important - what do I have? - still seems to be missing. From your comment, we live in the same town. So let's talk. I do not know of any scleroderma specialist here, but I do have a rheumatologist that knows quite a bit about it and diagnosed me on the first visit. Ill send you a private message with his name and my email address. Look forward to talking to you soon.

Big Hugs,
Janey
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#12 canon

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Posted 10 January 2009 - 07:36 PM

Welcome Jen,

So glad janey can help you get started with a good rheumatologist. Sorry you have gone and are going through so much. Hang in there!! Will keep you in my thoughts. I have the red spots too and they are unsightly but basically harmless if it is telangiectasia and on your skin. Get yourself some good lotion for your itchy skin.

With gentle thoughts,

Judy
A happy heart is good medicine.

#13 jefa

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Posted 10 January 2009 - 11:24 PM

Welcome, Jen. I am pleased that you have found us and hope the forum will prove to be as much of a boon to you as it has been to each of us. Also glad you had a chance to talk to Shelley. She is a beautiful person in every sense of the word.
Warm wishes,
Jefa

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#14 MaryFanPhilly

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Posted 11 January 2009 - 04:30 AM

Hello Jen and welcome to the board!

In reading your post I didn't see anything about your rheumatologist running an ANA test? That is the test which would most likely determine if there's an autoimmune at work. That said, my primary ran it twice and it came back negative-- it wasn't until I went to a different lab that it came out positive. My diagnosis was delayed for months because of it.

Your onset of symptoms sounds very much like how mine began, although I did have skin changes pretty early on. But EVERY single case is different, we're like snowflakes, no two alike! Your rheumatologist should certainly be aware of that and alert to every little thing; and DO mention the small red spots. Mention everything, you never know what might be a clue in the mystery.
Unfortunately we must be our own advocates in medical care and take charge. Ask questions, write them down and take them with you to your appointments, and seek second or even third opinions if you aren't satisfied.

You'll hear lots of stories and get lots of advice on this board, it's great.

Lots of luck,

Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#15 Nina

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Posted 11 January 2009 - 11:12 AM

Hi Jen ~ So glad you have found our wonderful forums...
I can understand completely what you are telling us. I have experienced much the same. What you are doing is so important, I let years go by listening to doctors who only made me feel like I was a "nut case."
I've been very fortunate to not have some of the advanced issues that many of our members have. For whatever reason, my symptoms seem to cycle and never really amount to much. UNFORTUNATELY, I do have a condition that many do not, "Watermelon Stomach." Now if some doctor told you that, wouldn't you think he was joking, or just making a rude comment? Well, I didn't pay much attention to this information at the time (probably back in 1994). I had so many other things going on at the time... who knows why we do the things we do. At any rate, no doctor (3 different rheumatologists, 2 different gastro. doctors, two different Primary Care doctors) diagnosed any condition other than "Fibromyalgia" and "depression." ~ I wonder why I was depressed?
This went on for many years until I began suffering from extreme fatigue. At some point I was diagnosed with "anemia" ~ told to start taking iron supplemens. That didn't work so well, so I went back to the gastro doctor; at which point I was told that the "Watermelon Stomach" had gotten worse and that my stomach was full of blood vessels that were weeping. I started having what is called APC treatments (the blood vessels were cartorized). Long story short: We ALL have different stories, we all have different degrees of symptoms, BUT we all are here to help and support each other.
What more could we possibly ask for?
I'm sure we will talk more later ~
Much love,
Nina (DE)

#16 jenee

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Posted 11 January 2009 - 11:29 AM

Hi Maureen and everyone,

Yes, I had an ANA test along with other tests including the SCL70 antibody those were negative. I am actually reassured to hear that you had problems getting a positive ANA but did get one eventually. I know from my readings that is common, just frustrating.

I am sorry about your skin involvement being worse and hopes that improves. I also have Dr. Maureen Mayes book and I have found that to be very informative.

Janey has been a great help the rheumatologist she mentioned is actually in the same office as the one I saw. The rheumatologist I saw just seems so young.

I actually went to the rheumatologist on my own initiative, my primary doctor, moves pretty slowly. I told Janey I wasn't sure if that is doctor Faux Pas, going to a doctor on my own I mean. There was also a communication error, which I assumes happens, with my primary Dr which I will explain below.

I had called my primary dr office and spoke to someone there not sure who and left a message for the Dr. asking to her to call me about a possible referral ( I meant referral letter) to a rheumatologist since I thought this was the best thing to do and also because some rheumys do require a referral letter.

Anyhow, she never called back but turned out scheduled me for an appointment with a rheumatologist with UNM one who does specialize in dermatology and Internal Medicine. I had no clue she scheduled an actual appointment. I received this letter about my appointment after visiting the rheumatologist at lovelace that I had called and arrange an appointment for since she did not need a referral letter and was able to see me pretty quickly like about a week wait.

I did ask Janey if she has heard about this rheumatologist and I am waiting back for her reply. I am hoping she has heard of him. Anyhow, I feel it is best to keep the appointment with him since my primary did refer me to him. I don't want to offend her since I had a request and she is pretty good about listening to me and I feel that is important.

Umm... guys has this ever happened to you? How do I make sure communication problems like this do not occur? This to me feels like a kinda sticky situation.

Anyhow, the appointment with UNM rheumatologist isn't until the end of April. I hoping that the rheumatologist at UNM will get a postive ANA as well since labs do differ and they use different labs.

Until then I need to do some more research.

I am also going call the rheumatologist I saw at lovelace and ask to be switched to the rheumatologist that Janey recommended for my 6 month follow up appointment. I think that should work?

What do guys think?

Thank you so much everyone for taking the time to listen to me and for responding to my questions.

Sincerely,

Jen

#17 jenee

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Posted 11 January 2009 - 02:17 PM

Opps, I meant HI Mary, was thinking about the sclero book.

Hi Nina,

I know what you mean about the nut comment, maybe we are being just ultra self conscious. I do know when I asked the rheumatologist some questions she seemed to looking at me like I was growing horns on my head, but was polite and helpful as I suppose she could be.

When I called Shelley the first thing I believe she said, was sclero, and autoimmune diseases in general can take up to an average of 6 years to be diagnosed. That can be a hard pill to swallow.

I believe the hardest thing for me is learning to be patient and probably for others as well.

Anyhow, thanks for the hi and sharing part of your story.

Sincerely,

Jen

#18 Jeannie McClelland

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Posted 12 January 2009 - 10:35 AM

Hi Gretalclyde,

I ended up making most of my specialist appointments without asking my general practitioner. Some of them are OK with it, some aren't. My insurance does not require referrals, so I figured out what the ****~ I felt I needed to see doctors that I could work with and whose opinion I felt I could trust.

My general practitioner had convinced himself that I had asthma, when none of the tests he ordered indicated that was the case. A nurse practitioner in the practice wanted to set me up with an appointment with a pulmonologist, but his specialty was . . . asthma. I said no, but she made the appointment anyway and sent my medical records without my agreement. Sigh~ Control issues, here.

Once I went to the 'Center of Excellence' that diagnosed me, I did take their recommendations on all the other specialists I have ended up needing. They knew who worked well with them and who knew more about sclero as it applied to their particular specialities.

And yes, I guess it was close to 6 years from initial symptoms to diagnosis. That was the hardest part. You'll hear over and over what a relief it is to finally get the diagnosis. When I saw my rheumatologist the day I got the diagnosis, I said "before you tell me, look at this." and handed him a slip of paper on which I'd written "SSc sine Sc with PH and ILD". He said "yes, I'm sorry" and I scared him half out of his socks by bursting out laughing. Man, what a major relief!

So hang in there, take care of yourself, and remember if your general practitioner gives you any hassle over making your own decisions, he's 'hired help'. We listen to our plumber's recommendations, but we make our own decisions!

Best wishes and warm hugs.

Jeannie
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#19 Amanda Thorpe

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Posted 12 January 2009 - 11:12 AM

Jeannie, you crack me up...hired help...love it. :lol: Isn't it such a shame that we get so desperate for a diagnosis that any diagnosis is better than no diagnosis. I knew what sclreo looked like and did to a person when the rheumatologist gave me the diagnosis nevertheless I was relieved to have a name for my illness. Naming it means it can be contented with, treated, investigated and lived with.

Gretalclyde I hope you soon get a firm diagnosis, with sclero a diagnosis should be base on symptoms as well as blood work and tests rather than any one in isolation. You can have SSc and a negative ANA as I do and did at diagnosis.

When it comes to dealing with the doctors remember you're acting in your own best interest, if that's a doctoring faux pas too bad...:angry:...with some doctors you'd be better off with a plummer! :lol:

Take care and keep going.

Amanda
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#20 jenee

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Posted 12 January 2009 - 12:35 PM

Hi Guys, Jeanie and ohboy,

Thank you guys so much for reminding me that I hire the doctors, I needed that! Jeannie, the plumber bit to me was funny :)

I can't believe they said you had asthma when none of the signs pointed to asthma but glad it was figured out. I wish we had a center of excellence here.

Ohboy, thank you for sharing your story of a negative ana at time of diagnosis, and yea you are right some doctors you would be better off with a plummer or the cable guy :)

Guys I really appreciate the advice and support you have given me here, thanks!!

Sincerely,

Jen