Great lesson! bloods results

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

Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 2/18/2008 12:31 PM (GMT -7)   
I had a GREAt one and a half hour lesson tis afternoon from an older man, I can hear men better, he taught me how to use my swanky expensive photo printer.
I think i 'have it' this time.
Now the bloods, they are all absolutely normal, every bloody (scuse pun) one of em.
What the hell is going on that I'm so tired, exhausted, muscles wasting, choking on bits of food, can't put one foot ahead of the other, in so much frigin AGONY, can't breathe right if exhausted, cant speak, get hoarse, douse the eyes with fluid, teeth falling out, can't wear shoes, only fluffy slippers, can't wear anything but baby soft clothes next to skin, have firey hands and feet, knees, elbows and calf muscles.
Now how the hell are they gonna sort all this if the bloods are fine when I get to London. Docs seem to DEPEND on bloods, cos, they do here.
Folks I aint a fake here, You simply cannot fake all this, including the jigging jerking, dystonia and chorea etc.
Has anyone else been in this position.
xx Ann
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


Quack
Regular Member


Date Joined Feb 2008
Total Posts : 29
   Posted 2/18/2008 1:46 PM (GMT -7)   
my blood test show positive ANA and high sed rate...they still think it's all in my head? So I really don't know what to say....I just keep waiting to see if I have any changes in another test...MRI etd..sorry can't help...but you are not alone..
if my sed rate drops and my ana drops...my Dr somehow thinks I'm getting better and not to worry??
quack

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 2/18/2008 1:53 PM (GMT -7)   
Wow Ann,
   Did they run a full panel of blood tests or just certain ones? It would be odd for you to feel so badly and every single test come back normal. I'm sorry your not getting the answers and treatment you need to feel better.
   Hopefully, the doctor in London will know more about what to do and order the right tests to get some answers for you. Hang in there, I know you are so frustrated and have every right to be. Take care and keep us updated. You are in my thoughts and prayers.
                                                          Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 2/18/2008 2:01 PM (GMT -7)   
They are not all usually fine!!!
My ANA has been 1/800 a few times. My prolactin has been raised so has my ESR, CK, but the muscle wasting is OBVIOUS, you'd be blind if you didnt notice.
Even the docs can see THAT!
But the bloods have never been completely off the richter scale and never conclusive enough.
THAT is why it all such a mystery.
I really do feel absolutely crapE, sorry about language, all the time, without a let-up. Except I have a great sense of humour - like a clown!
xxAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/18/2008 2:05 PM (GMT -7)   
My blood work has been normal all along. Even when the inflammation was so bad that you could see it. It depends on the doctor on if they rely on blood work as the end all be all or if they look at other factors. When I get really bad the only blood test that shows abnormal is my liver function. Even then that is a low abnormal. Heck my white cell count is occassionally a tiny bit high but when that happens most doctors ignore it. We found out the hard way with me it means I have a serious underlying infection that if left untreated will become so bad I have a 50/50 shot of hospitalization. So blood work does not always reflect how things really are because normally that kind of infection skyrockets your white cell count. For me it is so little above the high end of normal that it was missed every single time until I got so ill and my rheumy began looking for when I became ill. Now I have ALL my blood work sent to her. She doesn't do ANA tests anymore on me. It is a waste of time.

Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 2/18/2008 2:49 PM (GMT -7)   
you're right Redrose.
I have proved them WRONG twice before.
9 weeks after crohns surgery I was back in hosp complaining of awful pain and all the gastro said "bloods are fine, bloods are fine" I told him things were NOT fine and asked for a 'follow through' of barium which showed the CROHNS had RETURNED at the join of the surgery.
Second time was last in hospital when diarrea went awol and bloods fine bloods fine until they did biopsy under scope and found crohns more active than usual and I was put on a high dose of steroids.
I am STILL on steroids but am coming down off em and wouldnt be on too high a dose now.
xx for that Redrose and although you hate to hear it, I am convinced if docs looked at all the other indications they'd see that bloods are like with you.
They rely SO heavily on the bloods. I weary of them and all this sickness.
x ann
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 2/19/2008 3:01 AM (GMT -7)   

Hi Ann.  Hopefully in London the docs will do lots of other fancy tests like EMGs (which check for multiple muscle conditions), CT scans and/or muscle biopsies.  My brain is completely wigged out, but the best my neurologist can do is say "It's from the Lupus."  Anyway, there is lots more fun waiting for you if your neurologist cares to explore.  On a serious note, I'm sorry that you're having such a rough time.  I'm sending you lots of positive energy.  (((HUGS))))  Love, Butterflake 


Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna
 


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 2/19/2008 7:55 AM (GMT -7)   
Ann
I am sorry that you are hurting so badly and are getting no answers to your problems.
You mentioned in your post that your hands and feets and knees feel firey. That is a worrisome symptom to me. I was diagnosed with RSD 5 years ago from a car crash and what I was left with was burning in my left leg which also travels to my left foot and up to my shoulders. It is a very intense pain but the biggest complaint I have with RSD is the burning pain. I am not saying that you have RSD, I am not a doctor and I am not suggesting anything, but RSD is silent, there is no blood work or tests that show that you have it, other then discoloration and swelling in the area where you have it. Temperature change is another indication as well as bone loss. All I can tell you is what I know about burning firey pain. My leg is wasting away even with exercise. And the pain is intense. Sometimes I don't know what is worse, the pain from the Lupus or the pain from RSD. Whatever it is that is ailing you, I hope your doctor can figure it out and get you some relief.
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 2/19/2008 9:26 AM (GMT -7)   
What is RSD?
My bones are actually very good!
No swelling either.
I am absolutely miserable today. Very depressed.
xAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 2/19/2008 10:30 AM (GMT -7)   
Sorry life is so rough for you Ann. You're in my thoughts and prayers.

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


kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 2/19/2008 1:42 PM (GMT -7)   
Ann,
I am having the same issue with labs. It just makes me want to scream. So I understand the extreme frustration. I had positive labs in 2005 but normal since and I feel worse than I did when the labs were positive. Before becoming ill I was the type of person who lived by the Motto "If I want to do something I will figure it out and I will do it" I never set still I was always doing something from home remodeling by myself to carpentry and I am not a strong looking person I am 5'7" and 135lb so I don't look like I could do the things I have done. My illness is like my life a contradiction. I am now stuck doing as little as possible my house is always a mess, I have to ask for help to carry things I would have thought were light before, and I can't remodel my house or build anything anymore. I don't have the energy. But my labs are normal. I hope the London Docs can look past the labs and look at the whole picture. Good Luck!
-Kasey
Dx: Mixed connective tissue disease '05, sjogren's '05, GERD '05, insulin resistance '01, ADD '01, major depression '98, polycystic ovarian syndrome '97 Hypoglycemia '07 hypothyroid '07

adderall, prozac, synthyroid, multivitamin


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 2/19/2008 2:08 PM (GMT -7)   
Oh Kasey! I really really do understand. You say you have major depression, is that because of how bad you feel?
Does the Prozac help?
I have major depression too. I sort of gaff my way through this. Underneath I am dying with the depression, big time.
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


kncb95
Regular Member


Date Joined Jun 2007
Total Posts : 40
   Posted 2/20/2008 6:31 AM (GMT -7)   
The prozac helps a little. But I am so sensitive to medication they would like to give me more but my body freaks out. The reason is my previous Psych. doc had me on wellbutrin XR for years and it worked great but when diagnosed with sjogren's and MCTD my Rheumy wanted me to see him for pain and he added to my wellbutrin cymbalta. 2 days of taking both together my body went crazy with choreas(involentary movements). Due to this I now can only take prozac every other depression med even wellbutrin causes me to have involentary movements. I think wellbutrin is the best depression med I ever took I would love to be able to take it again. Of course with you having a movement disorder I would make sure anyone giving you depression meds is very aware of that so they can be careful in the choices of medication.
-Kasey
Dx: Mixed connective tissue disease '05, sjogren's '05, GERD '05, insulin resistance '01, ADD '01, major depression '98, polycystic ovarian syndrome '97 Hypoglycemia '07 hypothyroid '07

adderall, prozac, synthyroid, multivitamin


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 2/20/2008 6:43 AM (GMT -7)   
THAT is an amazing factor to take note of. THAnk you SO much for mentioning the chorea when on the meds.
That gives me real hope.
Thanks so much
xxxxxAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 2/21/2008 5:23 AM (GMT -7)   

HI Ann. RSD is short form for Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome. It is a painful neurological disease whose hallmark is "pain out of proportion to the injury: ( ie a sprain or fracture). It is unexplained persistant pain.

My leg and foot is always freezing and changes color, goes from normal color to purple.

I had never heard of it before neither until I ended up with it and I wish that I had never heard of it now that I have.

I hope whatever is wrong with you that you can get some releif. My heart goes out to you, hang tight and don't give up.

Connie


 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 1:46 AM (GMT -7)
There are a total of 2,732,866 posts in 301,064 threads.
View Active Threads


Who's Online
This forum has 151217 registered members. Please welcome our newest member, antknight.
220 Guest(s), 1 Registered Member(s) are currently online.  Details
YiyiBoo


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