I was misdiagnosed

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January
New Member


Date Joined Jan 2010
Total Posts : 12
   Posted 4/21/2010 2:20 PM (GMT -7)   
Hello everyone...It's been awhile
 

Back in Dec. - January I joined this group being diagnosed, with fibromyalgia and chronic fatigue syndrome.

 My doctor (Internal medicine) was giving me Glutathione/ATP injections which are an immune builder and a building block of ATP (adenosine triphosphate) the energy store in every muscle. These shots are the mainstay of treatment for chronic fatigue syndrome, auto immune, and fibromyalgia patients.

I was also taking vicodin for the pain and Skelaxin for a muscle relaxer for the tightness and tension. I was very concerned about being on Vicodin because by reading on Healingwell no one else was on the same type of medication I was on so I started asking questions. I had pain in my knees, chest, rib cage, ankles, places that was not common for fibromyalgia and the pain was still present with the vicodin. I was now up to 7.5mg and all the dr. could say is "I needed it for pain management"

 

February came around and I decided to see a Rheumatology doctor that specializes in Fibro and other types of health issues. First thing he said was "Let's get the word fibro out of your head and start fresh. Fibromyalgia is when you have had all testing and then this is ruled".

I have had no other testing other than a few blood tests from the first doctor guessing this was my problem.

After the first visit I was put on Ultram to help with the pain and within a few days was calling me with a positive testing of Ankylosing Spondylitis! OMGosh! My uncle has this and he is a mess, with a hunch back, curve in the spin, walks with a cane at the age of 47 and looks like he's 80, my friend on face book has this and he was begging for help several weeks ago because his insurance had cut him off from his medication, Remicade and he was dying in pain, now I have this also!

I was also very low with my vitamin D level because the muscle weakness and the bowl problems, which made the 1st doctor again think it was fibro.

 

It's now April 21st.

Ultram was not working for me along with the other medication could prescribe. The pain is unbearable and had to send me to a pain management.   one of the best in Houston. He did put me back on vicodin to give me some relief for now until we can get me on a plan of action. I started physical therapy with shock treatments that feels like a massaging motion taking place on my back and it is heaven!   has been talking about putting in a morphine pump as an option to get off pills that won't harm your organs.  Yes, there is TNF blockers such as Remicaide, Embrel, and Hermira, I may have the spelling wrong but they have a risk of cancer and I have a high risk of cancer in my family so we are going to stay away from that for now. I'm just 44 yrs old and I have lost both sisters to cancer and they were 54 and 53 and my mother and grandmother to cancer also.

 

 

 

Just wanted to update everyone and if you were diagnosed with fibro, make sure all testing is done. said "sometimes there is another problem and don't stop until all testing is completed before you are told its fibromyalgia.

 

hugs:  Jan

 

Jan, I just took the names of the doctors out of your post.  Not sure if they would want them all over the Internet.

Post Edited By Moderator (Sherrine) : 4/22/2010 8:23:05 AM (GMT-6)


confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 4/21/2010 2:48 PM (GMT -7)   
I was also dx with fibro for many years before getting a dx of AS. I would suggest anyone who has any autoimmune family members to be tested for the gene HLA-B27. Even if blood test do not sho inflammation it is possible. I am still in the process of determining if it is both or just AS and just started a TNF.

If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.


confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 4/21/2010 2:55 PM (GMT -7)   
January, email me and I will tell you of a great support forum for AS.
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.


WhiteChocChip
Regular Member


Date Joined Jun 2009
Total Posts : 439
   Posted 4/21/2010 3:36 PM (GMT -7)   
yeah ... before my diagnosis of Fibro I thought I had AS, given that it runs in the family. The first thing I asked for was the HLAB-27 test. I hear doing a lot of yoga can help keep your back mobile.

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 4/21/2010 7:23 PM (GMT -7)   
I'm sorry you got this diagnosis, January, and about all the pain you're going through. I don't know anything about AS, but my dad had ALS and no doctor around here really understood the disease or what kind of help he needed....luckily, he didn't suffer long. Probably, being in a large metro area, you won't have that problem. Good luck to you. And thank you for taking the time to alert people here not to stop seeking answers.
Debbie
   
    Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes -?- keloid scar tissue from back burn, arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraine headaches, skin cancer twice on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 4/22/2010 7:29 AM (GMT -7)   
I'm so sorry this has happened to you.  We do tell people to have testing to rule out other illnesses and there is a link on Fibro 101 that is called What Else Could It Be just for this very reason.  Many times we are "slapped" with this diagnosis and it isn't accurate!  You went through medications, injections, etc. for something you didn't have.  But, I'm glad you got a second opinion and now you are on the right track.
 
My brother-in-law was diagnosed with ankylosing spondylitis years ago.  He was a golf pro at the time.  But he received treatment and was given special exercises and he has done very well with this illness!  He still plays golf for enjoyment and is retired now.  You wouldn't know he had anything wrong with him.  So, I'll be praying that this will happen with you, too, now that you are getting the proper treatment.  Let us know how you are doing!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 4/22/2010 8:26 AM (GMT -7)   
Way back when I first had pain I I felt something else was going on and searched for answers. I did come across AS and mentioned it to the dr at the time and was told no way it was that. The problem with drs is alot of them do not listen and think AS is a man's disease if they even know of it at all. I never mentioned it again, because of the way the first dr treated me. The important thing is to remember to listen to your own body and keep a diary of symptoms. If you think it is more then get a second opinion, if one will not run the test then try another. I had been to many drs and rhuemys, spine specialist and more and was finally dx by a podiatrist when my feet were so bad i couldn't walk. I have damage that could have been prevented had I got a dx sooner.
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.


January
New Member


Date Joined Jan 2010
Total Posts : 12
   Posted 4/22/2010 9:06 AM (GMT -7)   
Thanks for all of your replies and Sherrine's as well, I have an appointment tomorrow to discuss what's next as far as a treatment plan. I can't keep hurting and eating vicodin. I have broght myself down to 3 a day but now I am chasing the pain. I just don't like taking that but I'm at my wits end and today I have given in. I'm starting back up to 4 or 5 for now until I can get on track. Dr.'s orders are every 4 hours but I'm being hard headed.

I don't know what I should expect as far as a "beginning treatment" for AS. I'm trying to stay away from the TNF blockers right now but the doctor did say something about cut and burn a pain nerve in my back and shooting some epidural solution up into the spin to help.
From talking with others in the waiting room this is a good thing…..idk… I will know a little more tomorrow but I need some help. I’m so tired of the hurting already and I’m just getting started with all of this. I’m glad winter is over, that has helped some.
Love to all ♥
Jan

MV_VHYC24
Regular Member


Date Joined Oct 2010
Total Posts : 28
   Posted 10/29/2010 11:01 PM (GMT -7)   
January & other,
 
reading the description of AS symptoms, I have begun to wonder if that is what I have been experiencing for the last 9 months. I had three injections in my SI joints to relieve extreme pain.  spent three days in the hospital since I couldn't walk without extreme back spasms & pain down my right leg.  In August, I was back in the hospital with extreme pain down both legs, couldn't walk, couldn't use the bathroom..ER drugged me and sent me home (in pain still...8) and I spent the next five days in bed.  I still have pain down my legs, I was told it was sciatica...and today my neck is so painful..I can't stand it.    The meds don't help.  I was popping 4-6 Vicodin a day, without any reduction in pain until I was put on MS contin & dilaudid for break through pain that doesn't respond to the MS contin.
 
I will inquire about AS at my next fibro appt.
 
Thanks,
Court
Dx:Fibromyalgia, Hashimoto's, Sjogren syndrome, +ANA (Speckled), Spondylolisthesis, Scoliosis, Migraines, Anxiety/Depression, Ovarian Cysts, Spinal stenosis, L4/5 herniated discs, Sexual Dysfunction
Meds:Cymbalta, Zanaflex, Synthyriod, MS Contin, Savella, Advair

**Children seldom misquote you. They more often repeat word for word what you shouldn't have [/purple
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