8 years and counting! No diagnosis or any ideas for that matter!!!!!!

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jj27
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 7/25/2010 7:54 AM (GMT -7)   
I have been telling my doctor of joint and muscle pain, rashes, IBS, muscle weakness, fatigue, headaches and many other syptoms for 8 years now. All they do is treat with pain meds and once in a while an antibiotic. It is not helping. I am getting worse!!!!!!!
 
A few months back my PCP sent me to a rhuemy, the rhuemy noticed that my ASO Titer was very high (1372) and put me on Sulfa for 6 months. My ASO Titer went down to 400. One month after I stopped taking the Sulfa, it was back at 800, then 3 weeks later its back over 1200.
 
Over the last 8 years, I have been shuffled around to over 20 doctors and specialists, none of which are concerned with what's going on with my body. I feel like they dismiss my complaints because there are so many! Along with the ASO Titer being over 1200, I also have a high C-Reactive Protein reading too, it is 9.0 with normal range 0.0-4.9.
 
Six years ago when I was having a really bad rash on my leg, obe doctor did a biopsy. The biopsy came back as Leukocytoclastic vasculitis (LV) and possible Henoch-Schönlein purpura (HSP). All of the doctors dismiss the HSP, mainly because they say my rash goes away too quickly. The only way my rash (or Vasculitis) goes away is with a very strong dose of Prednisone. Then within 1-2 months, it comes back.Then I take more Prednisone. It's a cycle and if one doctor would stick withit, they may find out what's wrong. I am lucky if a doctor will keep me as a patient for more than 6 months before shipping me to another doctor!!!!!

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/25/2010 8:15 AM (GMT -7)   
Dear jj27, welcome to our family! I am sorry you are suffering without people wanting to help, but please know that you have come to the right place....at least for kind and caring people who will listen when you need them too. If you read my previous post you will know that....I too am waiting and feeling pushed around. Mine has not been going on anywhere close to how long yours has, but please know I understand the frustration! I do not have ideas for you and I am sorry. Hopefully someone will answer soon with some for you, but I just wanted to say welcome and please keep us updated! We do care!

Take care of you!
Beckey

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 7/25/2010 11:17 AM (GMT -7)   
Have you been to a GI to see if it could be Crohn's?

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 7/25/2010 12:25 PM (GMT -7)   
I suggest sitting down with a pen and some paper and think about what was going on in your life when these problems started, and the 6 months to a year before. Did something change like moving into a new place, start a new job, get married, have a child, have a flooded basement or leaky roof, take a big vacation to another state or another country, so on and so forth.

Also think about how they started. Did all the symptoms appear at once or did they come on one by one over the course of a few days, weeks, months, years? What was the first symptom you noticed, the 2nd, 3rd and so on?

Write all of these things down no matter how trivial they may seem. This may provide valuable clues to you and/or your doctor(s) about what is going on, how it started and help get to an accurate DX.

Then start keeping track of the here and now. What do you eat, drink, medications you take (both RX and OTC), what do you do, etc just before your symptoms appear or become worse. The goal here is to find patterns and triggers. When you just think about things you may not see anything important but if you keep a written record of it then things start to become clear and can provide valuable clues as to what is wrong and how to effectively treat it.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.


jj27
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 7/25/2010 4:29 PM (GMT -7)   
I've been to 3 GI's. Crohns was ruled out. I have so many things wrong, that I think the doctors get overwhelmed and pass me to the next one.

I have also sat down and did what Jim 1969 recommended. Every time I go to the doctors, the list is longer. I feel like the doctor think its all in my head. Luckily my current doctor has given me some pain meds. I know they are bad for you, but they do make it tolerable. Theymake me a little itchy too....but I'll take that over the intense pain.

My conditions all came on over night. I have 2 herniated lumbar discs and was in a great deal of pain for a few years. The pain from that went away, overnight, and then I stopped sleeping. I went 5 days without sleep. Finally I got 2 hours of sleep and been an insomniac since. The lower back pain comes in the form of spasms and stays for month or years. Then goes away for a few months and comes back......I have always thought the lower back pain of recent was from the lumbar discs, but I got to thinking about the pain. It is different....it is a dull pain that I can't really pinpoint. It can range from a 5-10 out of a scale of 10.



Thanks for all of your suggestions so far. I am writing them all down and am in hopes of finding a pattern I can take to my doctor. If they don't want too or can't figure out what is wrong with me.....WE will!!!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/26/2010 7:36 AM (GMT -7)   
It sure makes things hard when one doctor gives up and sends you off
to yet another doctor, this has happened to me a lot over the past few years,
and my current neurologist has stopped looking at all mine and so I'm
having to look for another neurologist...this can be ever so frustrating
but you will eventually get that one doctor that will be able to help...
but then you also have to ask yourself is it worth finding out...cause by
that point you'd have a dx but then sometimes the treatments could be
Harsher than what your already doing and even then is it second guessing...
Sure wish I had a better answer for you....something that oh you have...
Prayers and well wishes to you...
(((((((((((((((((((((((((((((((jj27)))))))))))))))))))))))))))))))))))))
healing hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 7/26/2010 8:39 AM (GMT -7)   
Sorry to hear that jj , thats very tough no knowing , I had that happen to me for a few months and its so frustrating because you don't even know the things you should be doing to help your condition because no one can name it . Darn , 8 years is a long time to deal with that , but it speaks to your strength in hanging tough , good job ! I truly hope they can find an answer for you soon , good luck friend . Mikel

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/26/2010 9:10 AM (GMT -7)   
Dear jj,

All of your symptoms match the list of symptoms for Lyme disease and co-infections. I am not a doctor and cannot diagnose you, but would like to provide you with some information that may be helpful. The following is a list of symptoms that have been associated with Lyme disease (from www.anapsid.org/lyme/symptoms/tbi-symptoms.html). Not everyone will experience the same set of symptoms, because Lyme can attack any system in the body, but does different things to different people. Please get tested for Lyme if you have not already been tested! If you were tested and the doctor said your test was negative, please be aware that the current blood tests have a very high rate of false negatives. If you wish to pursue this possibility, you should probably find a Lyme-Literate doctor (aka LLMD in the Lyme community); the Lyme forum here on Healing Well can help you with that.

Good luck!
JoAnn

"short list" of possible Lyme symptoms:

Bladder dysfunction
Burning or stabbing sensations
Cardiac impairment
Change in bowel function
Chest pain
Confusion
Depression
Difficulty thinking
Difficulty with concentration and reading
Difficulty with speech, writing
Difficulty finding words; name blocking
Disorientation: getting lost, going to wrong places
Disturbed sleep: too much, too little, fractionated, early awakening
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
Exaggerated symptoms or worse hangover from alcohol
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Facial paralysis (Bell's palsy)
Fatigue, tiredness, poor stamina
Forgetfulness
Headache
Heart block
Heart murmur
Heart palpitations
Heart valve prolapse
Increased motion sickness
Irritability
Irritable bladder
Joint pain or swelling
Lightheadedness
Mood swings
Muscle pain or cramps
Neck creaks & cracks
Neck stiffness, pain
Numbness
Pelvic pain
Poor attention
Poor balance
Poor short-term memory
Problem absorbing new information
Pulse skips
Rib soreness
Sexual dysfunction or loss of libido
Shooting pains
Shortness of breath; cough
Skin hypersensitivity
Sore throat
Stiffness of the joints or back
Swollen glands
Testicular pain
Tingling
Tremor
Twitching of the face or other muscles
Unavoidable need to sit or lay down
Unexplained breast pain
Unexplained fevers, sweats, chills or flushing
Unexplained hair loss
Unexplained menstrual irregularity'
Unexplained milk production
Unexplained weight loss or gain
Upset Stomach or abdominal pain
Vertigo
Wooziness
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/26/2010 9:18 AM (GMT -7)   
P.S. Lyme disease is becoming a serious problem in this country, it is the number one tick-borne illness in the USA. But it is still "under the radar" as far as most doctors are concerned. They simply don't consider it as a possibility because most of them think it's rare. It is NOT rare anymore! And you can catch it in your own backyard.

tinyurl.com/czdxku
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 7/26/2010 10:52:02 AM (GMT-6)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/26/2010 9:28 AM (GMT -7)   
P.P.S. Stage III or Chronic Lyme usually requires many many months of antibiotics to make any sort of impact. Most doctors are unwilling to use antibiotics on a long-term basis, which is why you need an LLMD.
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


circusnomad
New Member


Date Joined Jul 2010
Total Posts : 2
   Posted 7/28/2010 10:32 PM (GMT -7)   
have you been tested for Celiac disease?
i had a combination of symptoms that were leading me in all sorts of directions. it was only until a migraine that lasted a total of 9 days that i got any answers.
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