New and Tired of being sick and tired.

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AngieE
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 10/20/2006 6:43 AM (GMT -7)   
Hello all
I'm new and have been through roughly 20k of testing already. Between the endless MRIs,MRAs, CTs,blood work, and EMGs, I'm a complete wreck. Let me start from the beginning.
A few months ago, I started noticing slight weakness in my legs. Nothing major. Then out of the blue, my lower back area started really hurting, my head felt like somebody was trying to sqeeze my insides out my head.(pressure), was shaking and freezing. The next day, the brain fog was still there, now experiencing some numbness that only last for a few seconds on face especially. And now, middle of my back and neck are also hurting. With the middle back pain, my entire body goes weak.
Also, I've been getting like muscle spasms in my chest and feels like somebody is pressing a finger in my throat. My diaphram also seems to be spasming (shortness of breath).
The worst however, which is better now.. At nights I was going numb on whatever body part I was laying on. If I were laying on my right side, the entire right side would fall asleep. If on my left,then the left side. If on my back, the back side (including my throat). I would wake up several times almost ready to pass out and gasping for air from this.
So, went to neurologist who is seemingly baffled. Now after months of testing, getting blood work done for auto-immune diseases. WTH didn't they check for this sooner?
I also don't have any pains in my hands. Sometimes in my knees, mostly in my left shoulder. But was told that in some cases RA can start in the back? All my MRI show my spine is fine,brain is fine,neck is fine.. UGH!!!!!
My question; Do any of these symptoms sound remotely familiar??
OH.. Went to er with first attack..They are mindless drones in there. I was however running a low grade fever of 101.

Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 10/20/2006 10:25 AM (GMT -7)   
Hello Angie,
Sorry for your health problems recent months. Relax it's not the end. For any disease there is an anti-disease - respectively "cure".
Yes Angie mantioned by you symptoms sounds absolutely familiar to me. First I want to tell you -  get away from docs who talks like that - "But was told that in some cases RA can start in the back" because they approaches to the diagnosis with prejudice wich often results in wrong diagnosis which results in wrong treatment and this is the bigest evil. RA besides it has speciffic exams and pattern of symptoms it is also a diagnosis of exclusions. *Universally* all the autoimmune diseases are diagnoses of exclusions which will say that anything else should be rulled out and after months, even years of suffering with all other possible diagnoses excluded, then eventually a diagnosis of autoimmune disease should be established and treated as it should b e.
Back pain is uncommon in RA. RA primary symptoms are usually swelling of fingers and large joints but not back. Pay attention, I'm stressing on the word "swelling".
My condition was very similar to yours. Now I'm diagnosed with reiter's syndrome, and my arthritis is almost unnoticable now. knock knock knock. I had the knee weakness, had the nubmness during sleep of the parts of the body which I slept on. Have the low-grade fever (still have it). I had overlooked uro-genital infection for months and may be for years before my first extra-genital symptoms appeared. The infection was cured for 2 weeks with antibiotics and the things started slowly to get better.
Do you have relatives with RA or ankylosing spondylitis or relatives just suffering from *unexplained* back aches sometimes? Have you been tested for lyme disease? Have you been noticing a thick bite or some rashes on you? Where do you live? How old are you? Have you had new sexual partner recently or sporadic sexual intercourses without condom? Do you have aches in the tendons (you can define tendon pain as pain not comming directly inside of the joint but a tender spots around the joint.)?


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain

Post Edited (Marius123) : 10/20/2006 4:40:36 PM (GMT-6)


AngieE
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 10/21/2006 5:44 AM (GMT -7)   
Well, I've been married for almost 10 years. So unless he's been a very bad boy.. I don't think I have any STDs. There was one night I woke up with literally the top of my neck all the way to my tailbone on my spine was aching, throbbing and felt swollen. I feel like I'm going insane. They did the blood work on me for the auto-immune last monday and my appt isnt for 3 weeks!! Now if they had found something, would they have called me back into the office?

AngieE
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 10/21/2006 6:03 AM (GMT -7)   
P.S. I saw that you had 'unexplained' kidney pains. I've had that ever since I had my gallbladder removed some two years ago. I've gone in to see if I had kidney infections, only to be told I had none. And yes, at first I was treated for lyme believe it or not. The blood work however said I didn't have it.

Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 10/21/2006 1:54 PM (GMT -7)   
about my kidney pain: the docs says that it's a part of my reiter's syndrome symptoms, I have some slight urogenital and abdomen symptoms in addition to the joints and eyes.
There is no certain blood tests for autoimmune diseases. This is the reason that I told you the followoing:
"*Universally* most ot the autoimmune diseases are diagnoses of exclusions which will say that anything else should be rulled out and after months, even years of suffering with all other possible diagnoses excluded, then eventually a diagnosis of autoimmune disease should be established and treated as it should be."

There are blood works that gives a picture about a "possibility" of autoimmune disease but there in no 100% confirming test nor a 100% ruling out test for autoimmune disease. That's why when a pain and inflamation is present the docs first looks for sure provable things which are infections, hernia, spine injury, that's why they make CT, MRI scans, blood and microbiological tests for infections and blood tests for autoimmune diseases which only gives some "support" to the diagnoses. And when they can't find a "logical" reason for the inflamation then they starts to think about the possibility of autoimmune disease. That's why they first made you all those tests you mentioned and they haven't made you AI diseases tests earlier;) That means that when the docs don't know what is wrong with you, then they put you diagnosis of "autoimmune disease". The only blood tests that indicates "possibility" of autoimmune disease are - positive ANA and/or RF, but again not sure. Even healthy people may have those positive.
 
So answering your question: My opinion is that the reason that they do not call you is that they did not find something that requires immediate treatment, so don't wait for a call if it's an "autoimmune disease" because AI disease does not require immediate treatment! On the other hand is that the diagnosis of autoimmune disease takes months even years spending of 'ruling out' other diseases (of course excluding diabetes, hipothyroidism and some others AI diseases that have blood work provable diagnosis, but I think you don't have the symptoms for them).
 
You did not answer to many of my questions on my previous post.
I have one in addition: Why you had your gallblader removed?

My advice is to take some immune support products and rest at home while waiting for the docs, and when you get better on your own (which I realy wish to you) the docs will continue to throw their hands in surpise if occasionally they don't see anything wrong on your blood tests and still don't know what is wrong with you.

Good luck, listen to the docs, keep in touch what the docs say, how you feel and what you take.

Marius


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain

Post Edited (Marius123) : 10/21/2006 3:54:11 PM (GMT-6)


AngieE
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 10/23/2006 5:28 AM (GMT -7)   
For my gallbladder; I had symtoms for almost 12 years. Classic gallbladder symptoms. Went to 4 different doctors all said i was having muscle spasms!! Gave me some heavy muscle relaxers and sent me away. We moved here to TN 2 years ago, then I started having the 'symptoms' almost everyday. Finally found a doc here who didn't even hardly examine me..Just listened to my symptoms and said you have gallbladder disease. The next day I was jaundice. They made me go to the hospital, stuck me on antibiotics, and did some testing. I had 8 gallstones the size of bb's. That night they took out my gallbladder. And never was so happy they did. That pain was horrible.
I'm just scared they are going to say 'well, we don't know whats wrong with you..good luck, see ya later' and let me suffer through this. I've actually gotten a little bit better over the course of the last month.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/23/2006 11:02 AM (GMT -7)   
Hey, AngieE:
Just wanted to wish you good luck and hope you'll find something out really soon!
Take care and Hugs yeah

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 10/24/2006 6:54 AM (GMT -7)   
hi Angie,
so, so sorry for what you're going through.  sad for so many, myself included, it took years & years and years before a proper diagnoses.  and what's worse? when they run all nasty diseases past ya! don't let it drive you crazy. tongue and just the same....being left with NO ANSWER or explanation to what's going on is just as worse, even more.  especially when you know something's wrong, you aren't the way you once were, and it's not in your head.  it's puzzling!  not only to you...but to the physicians as well.  no doctor likes a difficult, unclear case.  it's easy to diagnose & treat a text book case of anything...but so many times that is just NOT the case.
i'll give a little explanation of autoimmune disease processes which might be easier to grasp.
true there is no definitive blood test to diagnose an autoimmune disease; but docs look at your CRP, ANA, SedRate, Rheumatoid factor, and various IgGs IgMs etc....also, muscle enzymes too.  these help build a map to guide them on what to do next.
many times, if a person responds to an immunomodulator like Imuran, Plaquenil or some steroid...that also serves as a BIG CLUE that an autoimmune disease is present!  if a person responds to Enbrel or Humira?...the docs actuallu use medication response as a way of diagnosing.  cool eh?
 
safe to say, the majority of autoimmune diseases act similarly.  they are complex, and not easily understood (whether they are viral mediated or bacterial triggered or what!) eyes and they do or could effect the entire body.
for some reason not fully understood, the immune system which normally defends the body against pathogens, mistakenly starts to attack your bodies NORMAL cells & tissues! these include the lining of the joints & connective tissues (ligaments & tendons...even veins too) some autoimmune diseases also effect the tissues of the liver, heart & lungs and skin.
once triggered....tissue cells can grow abnormally, causing inflammation & swelling & pain.
i do hope this helped. or at least provided some clarity.
my best advise is to: keep regularly scheduled doc appts, find a good rheumatologist, a consult with an infectious disease doc, have a good primary doc too! and keep all bloodwork appts.
sometimes it might takes months for values to manifest in bloodwork, and they may be inconsistent too....but no Dr. will make a diagnoses based on just one thing....they look at labs, tests, physical findings, and what you tell them about how you feel effects your daily life.
this takes time, i'm sorry to say.  but you've got a lot of support here! you hang in there!
take good care.  erin 
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions; Intra-articular knee injections; Imuran; Mesalamine; Prednisone; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 

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