Dr. Appt update

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/29/2008 6:59 PM (GMT -7)   
Well I had my appt. with my internist today. she thinks that I have either Lupus cns with vasculitus or MS. so she is scheduling a brain MRI to see. she is referring me to the only good rheumy in our area, a neurologist and a hemotologist for the myelofibrosis and is sending him info on the lupus -myelofibrosis connection. She said she refused to let me hang in diagnosis limbo!!! so at least that is something. she also told me that I could adjust the prednisone to what ever I need.

I can say for a fact that the prednisone cured my unintentional weight loss shakehead oh well, if I get skinny but can't get out of bed, what good is that!

This is me staying positive!
scool
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues (family history - mother RA/Lupus maternal gma - lupus). rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/29/2008 7:08 PM (GMT -7)   
Thanks for the update Mawmaw.

Sorry you have another dx to worry about. Its hard to know whether to be glad that the doctor is taking things seriously or worried about what dx may result. But, its good to know you are on the path to proper management of whatever is causing so much trouble.

I hope its something that can be treated. Is the myelofibrosis anything like MS? How does it affect your body?

Let us know how long till your appointments with the neuro and the hemo. Ok?

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/29/2008 7:37 PM (GMT -7)   
Myelofibrosis is where the bone marrow dies and is replaced by fibrous tissue. I have no marrow left in my hips and pelvis. the hips pelvis and sternum are the bones where the marrow produces all of your blood cells. the liver and spleen can also produce blood cells but they become enlarged and damaged because the blood pressure to the organs is increased. so as a primary disease it has a poor prognosis. (average of 3-5 years after dx) But as a secondary condition to an autoimmune disease (which is extremely rare) it is resolved when the primary autoimmune disease is controlled. Johns Hopkins has a white paper on this and they have found 9 people with autoimmune myelofibrosis.

What makes mine likely to be the autoimmune version is that I have a very high white blood cell count and I am not anemic plus wth primary myelofibrosis the red blood cells are immature and mis-shapen and stick together. I do not have that issue (yay)

What I think made me feel better about this appointment though, is that she is not going to brush me off. And she answered my questions to my satisfaction. I am relieved even with the worry of what if this or that, just because I know we're going to get to the bottom of this and treat it. The not knowing, and fear of what damage is being done while we wait for the next symptom was far worse!

Thanks for your concern Rosie!
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues (family history - mother RA/Lupus maternal gma - lupus). rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/30/2008 7:26 AM (GMT -7)   
I'm glad for you that you have a doc who is determined to get to the bottom of things and not leave you out ther hanging. I don't think a lot of docs know how hard it is on us to be in diagnosis limbo. I was in limbo land for a few years and there were times I even started to doubt myself and question whether it was all in my head....I was driving myself crazy.

Keep us updated on what you find out. 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



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/30/2008 9:09 AM (GMT -7)   
Hi Marie,
 
The diagnosis limbo really is frustrating. Cry-inducing frustrating... 
 
Myelofibrosis is something I'm not familiar with.  Thanks for sharing with us what it is. I hope your doctors get to the bottom of all this very quickly. The great thing about the MRI is that the lesions for MS are very specific.  There won't be any "humming and hawwing" what is going on in the brain. 
 
Let us know the results!
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


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/30/2008 10:00 AM (GMT -7)   
spinningmawmaw said...
Well I had my appt. with my internist today. she thinks that I have either Lupus cns with vasculitus or MS. so she is scheduling a brain MRI to see. she is referring me to the only good rheumy in our area, a neurologist and a hemotologist for the myelofibrosis and is sending him info on the lupus -myelofibrosis connection. She said she refused to let me hang in diagnosis limbo!!! so at least that is something. she also told me that I could adjust the prednisone to what ever I need.

I can say for a fact that the prednisone cured my unintentional weight loss shakehead oh well, if I get skinny but can't get out of bed, what good is that!

This is me staying positive!
scool

She sounds like a really good doctor.  so glad you found her.  She doesn't want to leave you in limbo, tells you to increase the prednisone as you need it, and she is getting closer to a definite diagnoses.
Please let us know how this turns out.  I don't know much about MS, but know that it hits some people really hard.
Hester

Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/30/2008 12:59 PM (GMT -7)   
Hi mawmaw,

Oh my! Thanks for that great explanation of Myelofibrosis. How scary! And you are one of such a very small group. I'll bet you end up educating some of your doctors!

Yes . . . it is always great to be able to name the 'thing' that is attacking your body. I agree that the worry about what it might be is worse than the dx. At least with a dx, you have something specific to target with research, meds, and treatment plan.

I hope you'll keep us posted.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/30/2008 8:06 PM (GMT -7)   
Hi all, I got a call from my dr today. I go at 9:00 am tomorrow for the brain MRI. She also got me an appt with the best rheumy in our area, but it isn't until February! but that's because he's good so - whatchagonado? I was kind of taken back by the promptness of the MRI - the last time it took me a month to get in for one. so I guess she is thinking "important"!

On the positive side, one my best friend's husband is a neurologist. He's a stoke specialist, but he saved our son's life when he started having seizures. (his brain does not reset after seizures and we spend a week in neuro ICU) anyway, He is one of the best neuro-s in the area. If it is MS, either he can treat me or get me into the best ms dr we have quickly.

This is me staying positive!
scool <=== I like this guy - this is the new me!
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/30/2008 8:10 PM (GMT -7)   
Hey Mawmaw,

Glad the MRI is right away. February? That IS a long way off. Bet worth it, if this guy is good. Make sure to call the office and let them know that you'd like to be on the "cancellation list". If another patient cancels their appointment, you might be able to get in a lot sooner. They love to able to fill those spots. Tell them that you'll drop what your doing to get in there.

Yes . . . I like your new photo too!! This is me: blush My name is AlwaysRosie, because my cheeks are always rosie !!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/30/2008 9:38 PM (GMT -7)   
awww I like that! speaking of names, I have a cat. when he was born I tried to name him Crookshanks (because I'm a big Harry Potter nut) but everytime I walked by the cage his mommy and litter mates were in, he put his paws out and curled his little toes to me asking me to hold him. all I could say was "isn't he precious" so his name is Precious. and he is. since I first got really sick in May, he has been literally on me all the time. my husband says his ears go back if anyone makes noise while I am sleeping. He protects me! in fact my husband was pretty sure I was just being lazy at first, but one day he came home from work and all 4 of our cats were laying on or right next to me, and they bristled when he tried to get near me. He finally said - you ARE really sick aren't you? duh. he's a little slow on the uptake, but he's pretty precious too.

rambling on prednisone!
scool
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2008 6:00 AM (GMT -7)   
Its funny with the hubbies, how at some point, a light bulb just goes on.

My dogs are sensitive to my well-being too. I have fallen many times . . . but twice, I hit my head when I fell . . . and my two dogs came and laid on the floor with me and surrounded my head. They just laid there, very still and protected me. They've also guided me out of the woods when it fell dark. I was so grateful for their help another time when I was hopelessly lost and they brought me right to the car . . . taking a different route, they crossed over the woods (off the path) and guided me to a roadway. We followed the road right to the car!!! I had walked 9 miles that day trying to get out of that woods . . . . when I finally realized that my dog was trying to pull me in another direction. I wish I had followed her way earlier.

I'm glad your cats are so "Precious" and such a blessing.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/1/2008 7:16 AM (GMT -7)   
Hey Mawmaw,
I am glad that you are getting the MRI, and to see the rheumy too.  I hope it isn't MS, but if it is at least you have an answer.  February is a long way off.  Maybe you will be able to get one of those slots where someone else has canceled.
 
My prayers are with you
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 10/6/2008 2:20 PM (GMT -7)   
well, I called the Dr today and the results of the Brain MRI came back with no abnormalities. which is great! but I don't know what the next step is now. so I felt my spirits lifted, but quickly deflated. I hate limbo! I may have to wait 'til Feb when I get to see the Rheumy.

The good news is that I finally got down to 5 mg prednisone. I don't feel any worse than I did on 15. (no better either tho)

scool scool scool scool scool scool scool trying to stay positive!!!!
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/7/2008 4:48 AM (GMT -7)   
It is hard to stay positive waiting on something that could shatter your world.  How does one stay positive and create a plan for the worst possible scenario?  I don't know.  but I know it is not easy.
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 11:07 PM (GMT -7)
There are a total of 2,733,365 posts in 301,110 threads.
View Active Threads


Who's Online
This forum has 151249 registered members. Please welcome our newest member, John's Mom.
209 Guest(s), 8 Registered Member(s) are currently online.  Details
Mews2much, bluelyme, msOuchie, roisin86, ChickNorris, John's Mom, (Seashell), julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer