Discussions By Condition: I cannot get a diagnosis.

Sick since Nov 2006, still no answers....

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: stacky
  • February 13, 2008
  • 00:39 AM

Hey All, Im posting because my frustration is starting to build up again and I just need to vent. I am 28 years old and all of this started in Nov 2006 with what i thought was a common cold. I had $30,000 in insurance claims last year and no one can tell me whats wrong still. Here is a list of my current symptoms, things have definitely improved a little since early last year but lots of risidual symptoms still happening:

swelling in left ring finger approx every 2 weeks for the last 8-9 months, it swells for 3-4 days at a time to the point of not being able to bend my finger and is very painfull. It swells in the area between the nuckle and the middle bone part (in the cushy part). The swelling has since started spreading up my arm into my other hand and feet now. I can feel the stiffness everywhere sometimes.

a few times a week my breathing gets very shallow, feels like im not even breathing sometimes, everything feels really "slow" in my body if that makes sents. Lasts for a couple of hours sometimes.


Light headed
muscle pain
pain/burning sensation in my rib area (sometimes)
Fatigue
nausia (occassional)
weight gain
distended stomach (look a few months preg)
dizzy and headaches when I attemp to excersize
irratable


Here are the things I know:

have hiatal hernia
have endometriosis (diagnosed via lap nov 2007)
low DHEAS level
had strep infection that went undiagnosed for about 5 months, found in blood test.
out of breath with the smallest amount of exursion.
abnormal treadmill test, heartbeart freaks out a little when running, recovers fast per the doctor.
Tomorrow I have a pulminary breathing test.
buldging disk in neck (C6-C7 i think)
3 years of infertility (probably endo) or just being sick)


I am currently seeing a rheumatologist who has seen my hand swelling, she simply gave me naproxin and said "take 1000 mg a day and lets see if we can control the swelling, come back in 2 months". GRRRR! This is my life lady...can we do some work here???!!!

let me know if anyone has any fresh ideas or thoughts, im at a loss at this point. I have had lots of tests done. Brain MRI, neck MRI, abdominal cat scan, ect, ect, ect....I just want to feel 28 again!:(


Thanks,
Stacky

Reply Flag this Discussion

12 Replies:

  • Has any one explained the low DHEA??I did a little search on Pub Med just now and saw one article where it is linked to Sjogren's. I didn't do an extensive search, however, so it may be linked to other conditions as well.An endocrinologist should be able to explain the low DHEA. It sounds like you may have been to one already. Maybe you need another opinion- someone who can explain it...Has the rheumatologist checked for Sjogren's? It doesn't sound like you have it, though, since you didn't mention dry eyes and mouth, but perhaps if you do your own search on Pub Med, you will find another disease besides Sjogren's that matches your symptoms. Here's the link:http://www.ncbi.nlm.nih.gov/PubMed/I typed in "low DHEA", but you might want to check other things out, too.Good Luck.I hope you get answers soon.
    Anonymous 42789 Replies
    • February 13, 2008
    • 02:48 AM
    • 0
    Flag this Response
  • does part of it sound like this:http://www.webmd.com/a-to-z-guides/understanding-pleurisy-basics
    Monsterlove 2921 Replies
    • February 13, 2008
    • 09:25 AM
    • 0
    Flag this Response
  • Has any one explained the low DHEA??I did a little search on Pub Med just now and saw one article where it is linked to Sjogren's. I didn't do an extensive search, however, so it may be linked to other conditions as well.An endocrinologist should be able to explain the low DHEA. It sounds like you may have been to one already. Maybe you need another opinion- someone who can explain it...Has the rheumatologist checked for Sjogren's? It doesn't sound like you have it, though, since you didn't mention dry eyes and mouth, but perhaps if you do your own search on Pub Med, you will find another disease besides Sjogren's that matches your symptoms. Here's the link: http://www.ncbi.nlm.nih.gov/PubMed/ I typed in "low DHEA", but you might want to check other things out, too. Good Luck.I hope you get answers soon. Thanks for the reply. I am seeing a natropathic doc who just said low DHEAS can mean fatigue. One thing I forgot to mention before is that I have osteopenia also. I had a heel scan that showed it and I was only two points away from having osterperosis...and im 28 years old. I looked at the pleurocy thing and other ideas and nothing seems to fit perfect with what im experiencing. One though that i has was that maybe my liver and kidney functions should be looked at? Does anyone know if those areas could generate swelling issues and my other symptoms? I have had 1 test for lyme and I do camp alot every summer but the test was negative. Im pretty sure it was the non-preffered lyme test though and cant seem to get doctors to look more into that area. Thanks everyone.
    stacky 52 Replies
    • February 13, 2008
    • 06:44 PM
    • 0
    Flag this Response
  • Low DHEA can indicate pre-Cushing's Syndrome, and it's also associated with autoimmune diseases.
    aquila 1263 Replies
    • February 13, 2008
    • 08:26 PM
    • 0
    Flag this Response
  • Low DHEA can indicate pre-Cushing's Syndrome, and it's also associated with autoimmune diseases. Interesting, thanks for that info. My values back about 6 months ago were borderline low, when they were checked about 3 weeks ago it was at 60 and the normal range is 70-360 i think. Seems like its falling. they have me taking 15 mg of DHEA per day but I havent noticed a whole lot yet. Are their lab tests to diagnose the syndoms you mentioned below or is it based off of symptoms?
    stacky 52 Replies
    • February 13, 2008
    • 11:35 PM
    • 0
    Flag this Response
  • i dont know if this may be your problem or not but it is something to consider. You could have Chronic fatigue syndrome (also called chronic fatigue immunity dysfunction syndrome in some places). below is a part cut and pasted from my CFS story and it's symptoms which is on anothe site. I get 67 different symptoms with this condition.. in my symptom list.. you can see that swelling is one of the issues Ive had with CFS "23/ bone pain (only in the past when I had the FM) 24/ all over body pain (hurt laying on the bed cause of touching it.. with the FM) 25/ strange body sensations (like ants all crawling over me.. and also of like spiders biting me..so much I'd yelp with it at times) 26/ pain inside my body which would change places and like pressure or pushing (only with the FM) 27/ joint pain (back with the FM.but the muscle and bone pain was more of an issue) 28/ eye pain like behind my eyes (only with the FM) 29/ headaches (esp when ive over excerted myself) 30/ sore throat 31/ swelling of my toes of both feet and pain there (I couldnt wear shoes for two weeks..doctor said I had chillbanes and gave me medication, problem comes in with some CFS relapses) 32/ swelling right hand (2006 problem.. no pain involved with it) " It is common to get infections of all kinds with CFS too. I was at doctors day before yesterday for a reincurring Staph (Ive had Strep too) infection in my leg. Doctor told me they are going to have to do surgery on my leg to remove the area which the infection keeps coming from. For more on CFIDS and the various issues it can cause http://wwcoco.com/cfids/bernesx.html
    taniaaust1 2267 Replies
    • February 14, 2008
    • 00:16 AM
    • 0
    Flag this Response
  • pain/burning sensation in my rib area (sometimes) That symptom could be some "Costochondritis" going on... Look up Costochondritis for that symptom to see if the pain fits.
    taniaaust1 2267 Replies
    • February 14, 2008
    • 00:32 AM
    • 0
    Flag this Response
  • blaze, please stop sprouting such nonsense.. and be willing to go and research CFS to clear up your naive thinking. If one has lyme.. one has lyme. One cant then get a CFS diagnoses as both illnesses cause similar symptoms and lyme can be MISTAKEN for CFS if missed. Just cause your doctor wrongly diagnosed you in the beginning and you then found out you had lyme. Dont mean that everyone with CFS has lyme. from Dr Myhill talking about lyme "Some people may go into remission after the early stage, even if it is left untreated, and maybe just forget about it. The illness, however, can recur in its chronic late form weeks, months or maybe even years later. It's the late stage of the disease that all too often goes undiagnosed in the UK as standard NHS tests are usually negative by this time and it's often the symptoms of this chronic stage that can be misdiagnosed as ME/CFS. " okay so that happened to you, you were misdiagnosed, please get over this and stop your nonsense. They ARE NOT the same disease.
    taniaaust1 2267 Replies
    • February 17, 2008
    • 11:20 AM
    • 0
    Flag this Response
  • taniaaust1 says" from Dr Myhill talking about lyme"Some people may go into remission after the early stage, even if it is left untreated, and maybe just forget about it. The illness, however, can recur in its chronic late form weeks, months or maybe even years later. It's the late stage of the disease that all too often goes undiagnosed in the UK as standard NHS tests are usually negative by this time and it's often the symptoms of this chronic stage that can be misdiagnosed as ME/CFS. """"chronic stage that can be misdiagnosed as ME/CFS"""" PROVES BLAZE TO BE CORRECT!! SO PLEASE STOP BASHING BLAZE!!!! Do some searches, MS, ALS and more have been LINKED TO LYME & COINFECTIONS.http://www.immunesupport.com/library/showarticle.cfm/ID/3579 When there are clinical signs, e.g., rash, aseptic meningitis, optic neuritis, arthritis, an appropriate differential diagnosis must be pursued. On a clinical basis, **"chronic fatigue syndrome" or "fibromyalgia" cannot be readily distinguished from chronic Lyme Disease. ""Indeed, accumulating experience suggests that Lyme Disease may be a frequent cause of fibromyalgia or chronic fatigue (8,12). ""**""Other microbes have been proposed as causative agents of multisymptom disorders that are being termed chronic fatigue and fibromyalgia"", especially more recently recognized mycoplasma species such as M.fermentans and M.genitalium, but definitive proof of cause and effect has not yet been established (6, 23). There has been an attempt to separate "late" Lyme Disease from "chronic" Lyme Disease, the former being manifested by objective signs of arthritis or neurological disease (32). Some have denied the existence of chronic disease, inferring that these patients suffer from psychiatric disorders; some have used the term "chronic" to mean post-treatment disease ("post-Lyme"), assuming that the infection has been treated, and the remaining symptoms are in the same realm as those patients who have "fibromyalgia" or "chronic fatigue" (27, 30). These assertions are speculative and remain unproven. ""That chronic Lyme Disease actually exists, and is likely the most common form of the disease, is supported by epidemiologic studies demonstrating that 30-50-% of treated and untreated patients go on to develop a multisymptom disorder typical of, and indistinguishable from, fibromyalgia and chronic fatigue"" (1, 28). As with other multisymptom disorders, chronic Lyme Disease is a clinical syndrome consisting of fatigue, arthralgias and myalgias,and other nervous system dysfunction(7). http://www.ilads.org/files/ILADS_Guidelines.pdf"The clinical features of chronic Lyme disease can be indistinguishable from fibromyalgia and chronic fatigue syndrome. These illnesses must be closely scrutinized for the possibility of etiological Borrelia burgdorferi infection."Fibromyalgia"The outcome of treating fibromyalgia secondary to Lyme disease with nonantibiotic regimens has been poor. The most encouraging clinical trial showed success in only one of 15 patients and only modest improvement in 6 of 15 individuals with fibromyalgia despite 2 years of treatment.Antibiotic therapy has been much more effective than supportive therapy in symptomatic patients with fibromyalgia secondary to Lyme disease.Fibromyalgia treatment alone without antibiotics raises the risk of conversion to refractory chronic Lyme disease and/or exacerbation of an undiagnosed persistent infection and is not recommended. Increasingly, clinicians do not feel comfortable treating fibromyalgia in Lyme disease without antibiotics."ALSO NOTE: There are Coinfections with lyme that have different symptoms than lyme. They must be tested differently. Just because a person has a lyme test and its neg , doesn't mean its true. Go to www.lymenet.org for more accurate info.I am not a dr, just some one else who has suffered with undx'd lyme for 20 yrs. Then 10 yrs ago, thought to have had MS and ended up with a fibro dx.10 yrs of useless antidepressant meds did nothing for my fibro! ABX treatment really does work.Best wishes~~JERSEY LYMIE
    Anonymous 42789 Replies
    • February 19, 2008
    • 11:56 AM
    • 0
    Flag this Response
  • Look up Addison's Disease also. This matchs a lot of your symptoms.
    Larkenn 20 Replies
    • February 23, 2008
    • 04:54 AM
    • 0
    Flag this Response
  • Thanks for all of the responses. I have checked into addisons and Costochondritis on the net. Addisons could be what I have, although it mentions weight loss and I have actually gained weight, Im not sure if that is one of the "key" characteristics or not. When I have the burning rib sensations its like my skin is burning or tingling near my rib area or its in the muscles or something. When this happens it usually happens and wakes me out of my sleep along with a pulsating sensating up and down my spine and into the base of my neck. Its almost like an attack of some sort when it does happen and occurs about 1-3 times per month, I remember so well right now since it happened at 2 am this morning. Its a scary feeling, I also notice my muscles on my left side (same side as hand swelling goes really weak) my fingers actually take weird shape, they tend to "cup" or collaps tightly against my hand w/o me trying to do that. all of this is accompanied by nausia overall "sick" feeling. Thanks for all the wonderful responses. I would like to be tested further for lyme but doctors dont seem to interested in that. My pulminary breathing test was good last week and the orthopedic center gave me a shot in my swollen finger of cortisone (VERY painful). The swelling is gone but the muscles up and down my arm and finger are still weak and feel weird. Like they did before, now just w/o the swelling. Thanks for all the feedback, keep it coming if you have anything to add:) ~Stacky
    stacky 52 Replies
    • February 23, 2008
    • 02:45 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Is that you blaze.. hiding under "unregistered"? blaze stated .. "Chronic Fatigue Syndrome is Lyme" It's THAT STATEMENT which really bothered me, as it's untrue and misleading people about both the illnesses. No where in that stuff you just cut and pasted was that statement backed up. """chronic stage that can be misdiagnosed as ME/CFS"""" PROVES BLAZE TO BE CORRECT!! " the word you are missing reading is "chronic stage that can be MISDIAGNOSED as ME/CFS" note the word MISDIAGNOSED. That article never said they are the same thing.. in fact the word MISDIAGNOSED makes it clear they are separate illnesses and not the same illness as blaze is telling people. "When there are clinical signs, e.g., rash, aseptic meningitis, optic neuritis, arthritis, an appropriate differential diagnosis must be pursued. On a clinical basis, **"chronic fatigue syndrome" or "fibromyalgia" cannot be readily distinguished from chronic Lyme Disease. ""Indeed, accumulating experience suggests that Lyme Disease may be a frequent cause of fibromyalgia or chronic fatigue (8,12). ""**" yes... it's true that the symptoms can be the same and Ive actually told many at this site that on occassions. This isnt new info to me at all. And Lyme disease id myself personally think, may end up causing CFS just as much as some other illnesses do eg 10% of severe EBV cases develops into CFS and this is the same with some other viruses etc too (right now i cant think off my head what the others were to name them),which have a rate of about 10% of people with them, end up developing CFS. The point im trying to make is just cause CFS can develop from an illness, it dont mean that CFS and that illness is the same thing eg EBV (which often has been the trigger for many with CFS) ISNT CFS.. and hence also CFS and lyme aint the same thing. "some have used the term "chronic" to mean post-treatment disease ("post-Lyme"), assuming that the infection has been treated, and the remaining symptoms are in the same realm as those patients who have "fibromyalgia" or "chronic fatigue" (27, 30). These assertions are speculative and remain unproven" Note that it said THESE ASSERTIONS ARE SPECULATIVE AND REMAIN UNPROVEN. (i cant currently get my head about what it's saying due to the CFS, but do note that last statement, im not sure what part it's refering to may not be true thou). " ""That chronic Lyme Disease actually exists, and is likely the most common form of the disease, is supported by epidemiologic studies demonstrating that 30-50-% of treated and untreated patients go on to develop a multisymptom disorder typical of, and indistinguishable from, fibromyalgia and chronic fatigue"" (1, 28)" nods yeah.. it says the same kind of symptoms as i said before.. i already knew this.. but it dont say it is the SAME ILLNESS. Just that they can appear the same symptom wise. This is percisely why lyme needs to be discounted before a CFS diagnoses. This is also why I often suggest for people with CFS symptoms to go and see a CFS specialist. A CFS specialist will test for ALL the things which cause symptoms like CFS. This needs to be done, all other things need to be ruled out, before a CFS diagnoses is made. Nothing you just posted disputed what im trying to say about them not being the same illness. And i know for a fact that if one has lyme.. doctors WILL NOT diagnose with CFS cause of the symptom similarity. One cant distinguish CFS from lyme if one has lyme! so hence how on earth would one know that person also has CFS? Antibiotic therapy has been much more effective than supportive therapy in symptomatic patients with fibromyalgia secondary to Lyme disease." and to the other stuff in that post.. of cause if one has fibro as well as lyme, the fibro symptoms are not going to clear up unless the lyme is treated. That's just common sense. (not all fibro patients thou have lyme). That article as far as i understood it was refering to treating THOSE fibro patients who do have the lyme and with fibro cause of having lyme.. with antibiotics. i dont know why you cut and pasted the fibro stuff. But that isnt saying that all fibro patients have lyme either (if that is what you were trying to suggest by posting it). It's refering to fibro as a SECONDARY condition to lyme ..eg if you get lyme.. you may have the fibro. and is refering to hence treating those who have both lyme and fibro with antibotics.. which is all common sense. It dont say that all fibro people have lyme. (sorry to the original poster for this big discussion)
    taniaaust1 2267 Replies
    • February 23, 2008
    • 03:50 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.