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Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 8/29/2008 12:59 PM (GMT -7)   
Hello, I just found this group. I'm so glad I did. I hate to "complain" but there will be some of that so be warned!

I have been married for 25 years. we have 6 children, 1 grand-daughter and another on the way. My husband has Aortic valve insufficiency and will need surgery at some point. He also has bipolar well controlled at this point with medication. my 18 year old son has potentially fatal form of epilepsy, where his brain does not reset after seizures and must be put into a coma each time. it is not 100% that he will come out of the coma each time so it is very scary. so far he's had to be in the Neuro ICU every March for the last 3 years. Drs see nothing special that it is always march??

now me.
I have been having health issues for many years. For the last 5 years pain in my lower back and hips has been intense. My kids have to tie my shoes for me!

I went to the dr. since my ANA and sed rates were high they sent me to a Rheumy. She was nasty to me. maybe you just bump your hips and bruised them? And they hurt for years?? maybe you keep doing it? grrrrrrrrrrrr

The xray showed nothing but she would not do an MRI - She said it wasn't worth the expense. (I'm on medicaid) after a few more years of suffering and more and more symptoms kept popping up, I went to a new Dr. she ran the MRI - guess what! I have Myelofibrosis. this is a disease of the bone marrow. the marrow dies and you can not make enough blood cells. this is a fatal disease when it is primary. the prognosis is 3 - 11 years after diagnosis.

One ray of twisted hope is that this disease is secondary to an autoimmune disease. it is very rare, but can be associated with Lupus. Lupus matches all of my symptoms that are not related to the myelofibrosis.

I am waiting now for another set of blood tests to confirm. I have the malar rash, severe fatigue, pain in joints, possibly pericarditis, and fevers. my blood tests from 6 months ago showed an extremely high ana, and crp. sed rate is elevated and so on. Also my mother has rheumatoid arthritis - lupus overlap.

I had a flare or maybe 2 flares right after each other. I have been in bed most of the time since May. I am just now feeling better as I have been put on my 1st course of prednisone. no bad effects yet. this is day 7 of the 15 day course. The only symptoms I have now are heart pounding on light activity and that gets me tired (not the horrible fatigue though). and my hips still hurt. so this is me. I want just to lay my head on a shoulder of someone who understands.

thank you all for being here.

M

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/29/2008 2:36 PM (GMT -7)   
Hi M. Although I can't relate to your having something as awful as myelofibrosis, nor do I have sick family members, I do relate to everything else, including a doctor who didn't listen, being in diagnosis limbo, and needing a sympathetic shoulder. I'm happy you found this forum and hope you get the support and understanding that you need here. Be sure to let us know the results of your recent labs when you get them.

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/29/2008 5:05 PM (GMT -7)   
Hello M,
 
We're glad you found us too.  Sounds like you have way too much on your plate.  I'm sorry you're dealing with so much. 
 
Don't you want to go back to that first rheumy and slap her with a negligance lawsuit!  Holy mackeral that is brutal.  I'm so glad you found a rheumy who took you seriously.  Let's hope that your treatment will work quickly and your lupus diagnosis will come soon too.
 
Please keep us posted on your blood work.  If you have any questions or just need to vent, we're here for you,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/29/2008 5:31 PM (GMT -7)   
Hi M. Welcome and ((((Hugs)))). I'm so sorry to hear all that you are dealing with not only with yourself, but your family's health too. You will find many understanding and supportive people here who will give you a shoulder to lean on or cry on.

Sadly, your experience with your first rheumy probably sounds all too familiar to a lot of us. Thank goodness you eventually went to another doc. I had an old rheumy who had me convinced several times that my symptoms were "all in my head".

I'm glad the prednisone is helping. Prednisone is the med that finally gave me some relief and gave me back some sort of quality of life. I don't like some of the side effects and am trying to taper down to the lowest dose possible. I hope your taper goes well.

I'm glad you found our forum. It's so nice to have a place to come to where people really understand and relate to what you are going through. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 8/29/2008 6:19 PM (GMT -7)   
cry thank you all for your kind words of support. just what I needed. I will indeed keep you all up on my info. It is enough tonight that I had virtual hugs!

M.

Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 8/30/2008 4:38 PM (GMT -7)   
question - as I think I mentioned, I am on my first course of prednisone. 60 mg / 5 days, 40 mg / 5 days, then 20 mg / 5 days. I am now on day 3 of the 40. After 4 days on 60 mg I felt good but now I am on day 3 of the 40 and pain is creeping back into my hands. :< of course this happens on the holiday weekend. I didn't want to be on a high dose. anyone with "backing off" experience advice?

also, I read in the "rules" that you were not supposed to use your name so I have used my initial, but I am Marie
Myelofibrosis, possible Lupus, testing as of 8/08


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/30/2008 5:05 PM (GMT -7)   
Marie, as far as using your name, it's completely fine to use your first name - a lot of people here do that. We just discourage people from using their entire first and last names for your own protection from spammers, etc.

I think what you are experiencing on your prednisone taper is fairly normal. The higher doses help you feel good, but as you taper, symptoms gradually rear their ugly head again. My advice to you is to call your rheumy if your symptoms start getting too bad again. Tell your doc what dose you felt good at and how you are feeling as you taper. The doc can then decide if any changes need to be made to your taper. Tapering can be very tricky. There's nothing easy about dealing with this disease. Keep us posted on how things are going.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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