Hi Again...

[planningguy]

Tracy,

I really hope it does work out. I know that none of it sounds good, but West Nile and Lupus are at least better in terms of prognosis.

It's funny to hear all the talk of Star Wars costumes. My boys have both been jedi multiple years in a row. My wife is pretty handy with a sewing machine so she's done at least two sets of "jedi robes." This year my middle one wants to be Yoda. Still trying to figure out how to do the ears

Take care,

Robert

 

[awieleba]

Hi Tracy & robert,

well, my kids want me to be princess lea! I looked for a costume and all the lea ones are tight white jump suits........ok......not going to happen. with my stomach muscle problems, this would really scare the kids!
My son's want baby Grace to go as yoda! There is a baby lea costume, but they want yoda baby costume. Well, I wanted all this time for a for a girl and I thought how cute would she be as minnie mouse or little cat. BUT, I want my boy's to be happy, so my little girl is going to be Yoda! Will the sacrifices never end that we have to make! My husband will be a sith with black robe. This beats the fact that my son Jack has went as spider man every year. IT will fun. They do a hay ride/parade in the sub before tick or treating and then my friend is having kids back to her house for a party and even hired a magician who will do a spookey themed show!

Tracy, how is the oxygen?

 

[planningguy]

Wow you will have a bigger challenge with the ears than I will. Trying to find something that a baby girl will not want to rip off her head in the first 30 seconds

Robert

 

[crystalkk]

Tracy,

Are you feeling any better being on the oxygen?

 

[mtngirl]

Hey...sorry I've not answered more quickly. I've been in Denver all week getting the tests done that the pulmonary doc ordered.

Anyway, I had an echocardiogram and chest CT w/contrast on Tuesday. I woke up yesterday with shortness of breath and nausea...not unusual for me lately but I actually got sick and started to freak out. So, I tried the pulmonary doc to try to get test results, etc. and was told that he would be unreachable for a week. WHAT? So, I called my PCP and he wanted me to go to his cardiologist due to shortness of breath, etc. Cardio was able to get the test results which showed I have a hole in my heart which could be causing some of my symptoms I guess.

I am quite the case! I have everyone baffled. Anyway, the cardio felt that I did not need to be on the oxygen (it didn't make me feel any better) so I'm off that for now. I will not go back to the pulmonary doc I saw. I have an appt. at National Jewish in a couple weeks with an overnight sleep study etc. I'm seeing a doc that is supposed to be one of the best breathing docs in the country...Dr. Good.

I still feel that this could all be neuromuscular but the docs are not convinced. Sooooo frustrating....I feel like I'm fading. We are considering a move to Denver as all of my family is there and where we live is sooooo remote. I am two hours from a hospital.

I will keep you all in my prayers and will keep you posted. Maybe my story can help someone else...it's strange for sure.

Tracy

 

[crystalkk]

Tracy,

I feel so bad for what you are going through. Are they going to fix the whole in your heart.
When my symptoms first started they tested me to see if I had a whole in my heart.

 

[planningguy]

Tracy,

You are going through a lot. I hope they dig their way to the bottom of it.

Robert

 

[CindyM]

I hope they find some answers for you soon, Tracy!

 

[rose]

Tracy, I'm so sorry that new problems keep cropping up! Have they discussed a repair to your heart? Is it possible that it has always been there and has recently started to worsen? It certainly could explain your breathing difficulties.

. ... Back when my daughter was an infant she was very sick much of the time. We brought her to the best doctors, they looked for all of these exotic immune problems... we drove he down to Duke and she was seen by excellent doctors there too, and we got nowhere. Then, when her pediatrician retired, we took her to a brand new guy, fairly young, just into practice for a little while. And his first questions when he saw her were about tests that were never run, that to him seemed a glaring omission. Long story short, after four years of searching for the obscure, it turned out she had a fairly common congenital kidney defect that was easily repaired with surgery, and it had been overlooked by specialists at the University of Pittsburgh Medical Center and Duke. Two of the very best institutions in the country. What I'm trying to say, is that if you've had this problem with your heart, it could explain more than you're able to connect right now.

That's great that you have another appointment to see a different pulmonary specialist, the one you've been seeing was well meaning, but his questionable choice of oxygen, and being unreachable is not a good combination.

..What if you just go out to Denver on a temporary basis? Just stay nearby family and the medical facilities until you've got a diagnosis? Moving may be what you ultimately decide on, but even the thought of moving is stressful, so you'd be tackling yet another challenge, while still having so many unanswered questions.

Please keep letting us know how you're getting on. big hugs! :smile:

 

[mtngirl]

Hey Rose...thanks for your reply. You always show a lot of insight.

I'm starting to wonder about the heart thing. The body is so complicated and maybe this hole is causing physiological problems that are manifesting in a weird way (whoa, I sounded smarter in that sentence than I am...ha ha). But seriously, one never knows.

Does anyone know if breathing issues can be an early sign of MND? I have weakness in my left hand and arm but not clinical. Would it be atypical to be having breathing probs this early on? My reflexes are crazy and I twitch all the time.

Yes, the moving thing is complicated. I have two young kids in school and my husband runs a ski area. Commuting would be hard for him but not out of the question. Then there's the discouraging thought of trying to sell a house in this market. One thing we've considered is staying w/family and having the kids go to school w/their cousins until things become more clear for us. I feel better when my family is around to help with my kids, etc.

I will have another echocardiogram in two weeks to see how large the hole is. Also, I'm supposed to do a "real" sleep study overnight in a sleep center to see what is happening when I sleep.

Happy weekend!

Tracy

 

[brendapals]

Tracy,
I'm definitely not an expert on anything at this point, but I do know that since my diagnosed on 6/3/08, nothing has really changed for me. I told my hubby tonight that my speech seemed more slurred in the last week, but it may be from total exhaustion. We have 3 boys and 2 farms, and all of it is very busy.
My shortness of breath has increased somewhat also in the last week. I have used bipap at night for about 4 yrs now for moderate to severe sleep apnea. I even had another sleep study done back in April, thinking maybe my speech was messed up because of that.
Just a clue for the sleep study, if they put the "gunk" in your hair to attach the elctrode thingys, the best way to get the "gunk" out is dishwashing liquid.
Keep us posted, and know that you will find lots of support here,
It's a great bunch,
brenda

 

[mtngirl]

Hi guys,

Just an update on my ever-complex illness. The heart thing didn't pan out...I had a more in depth echocardiogram and the hole is much too small to be causing my problems.

Something of interest though is that my ANA has come back positive twice now (speckled pattern) with two anti-DNA readings that were positive. I think this would be quite indicative of lupus. My rhemie doesn't seem convinced...I will be seen at National Jewish tomorrow by another pulmonary doc.

Anyway, does anyone have any experience with lupus? Has anyone on this forum ever found out they have lupus?

This is all so confusing and I'm still playing the waiting game...

Sending out good wishes to you all.

Tracy

 

[awieleba]

tracy,

yhis could be promising, so to speak. I had a + ana speckled smooth. but no anti + dna...bummer. kinda sad I would be hoping for lupus! Have you ever had a rash? I have also been having alot of breathing problems-sob. I would write more but gotto go put baby to bed and finish my sons b-day invites to his big 7th laser tag b-day party....

 

[rose]

Tracy, I believe that a false negative is more prevalent than false positive. Heck, my doctors treated me with major immunosuppressants for a year with NO raised ANA's in the hopes of it being inflammatory. So, yes, I think that its a good thing, relatively speaking.... please keep us posted. I was just thinking about you yesterday, wondering how you were.

 

[mtngirl]

Thanks you guys. I think about all of you every day and I'm so thankful for the support. I'll update you after tomorrow's appt.

Rose, just curious...what immunosuppresant did they put you on? My rheumy prescribed a NSAID for me (basically strong ibuprofen).

I have been in limbo for so long I think I'm just afraid that the docs will not diagnose and treat me. That's what happens when you've been told "I don't know" for so long (I know I'm not the only one). Like all of us, I have known that something was wrong with my body for awhile now and it would give me peace to know what it is.

Anyway, April that Laser tag party sounds like a blast. I haven't had any rashes recently but I do have psoriasis and that flares up from time to time.

This autoimmune thing makes sense to me...I've read if you have one you're likely to get another. Also, my mom has Sjogren's, sister Fibro, grandmother MG and grandfather MS. I would say that autoimmune runs in my family.

Hope you all have a restful night...

Tracy