Discussions By Condition: Muscle conditions

No diagnosis after 9 mos escalating symptoms

Posted In: Muscle conditions 6 Replies
  • Posted By: mforbes1974
  • January 11, 2007
  • 03:57 AM

I am new here, and came upon this site while doing research for lupus, RA, scleroderma, lyme, etc. Its hard to decide where to start! I will start with my med. history.
32 yr old female with history of depression/anxiety. I take antidepressants, and occasional xanax for anxiety attacks. I was diagnosed with CFS after a bout with mono @age 14 that I never really recovered from and they had no other diagnosis. I learned how to deal with the fatigue, and just accepted that as a part of my life; who I was. I have a history of frequent UTIs as well as blood in my urine. I hemmorrhaged after the birth of my 2nd child and almost died. They released me from the hospital after less than 2 days. I had almost made it home when I began hemorraghing again. By the time I got home, I started to go into shock and spiked a fever of 103. my mother called the doc and they didnt even readmit me, just told my mom to get fever down. Later I was put on antibiotics to get the "infection" under control. I continued to run a low grade fever for months after. Diagnosed with reflux into my kidneys later on by a urologist after several tests to explain blood in urine, this is a lifelong condition, only treatment at the time was to be put on antibiotics for life. I declined. The UTIs werent as frequent, and when I would have one I could feel it and drink alot of cran juice.After a routine pap 3 yrs ago, theyd found some abnormal cells, and did biopsy, etc. No cancer thank God! But I had endimetriosis, uterine polyps and had abblation to remove the uterine lining, had a tubal before that. After that I started to have nightsweats all the time, but again they could find no reason for this symptom, after thyroid testing. Still have nightsweats off and on. Had an ulcer in my early 20's and was diagnosed w/ GERD, have been treated w, prilosec or prevacid ever since. The only trauma I have ever sustained was five yrs ago as a passenger in a car wreck. The car struck us going about 50mph while we were turning. This caused neck injury from whiplash, as well as back pain. Saw a chiropractor briefly, but didnt help much. After living with the pain for awhile, my GP put me on painkillers, which I currently take, while checking in with him every 3mos. I've had migraines since my late teens, which I also take med for only at the onset of the migraine.
Last Feb. I started to have increased pain in my left wrist. While I'd had pain before, I just assumed it was due to strain, I used to be a waitress and bartender, so have put alot of exertion on my wrists and hands. I also thought it could be just another side effect of the car accident. At this time, my GP diagnosed tendonitis and referred me to orthopoedics. While waiting for the referral appointment, in march ,my left ankle gave out, twisted inward, and I broke my foot when I fell. I had never broken anything before. I was seen in the ER for the fracture and sprained ankle, and referred again to the same ortho clinic with an earlier appt. Some ppl thought this was funny that I should break my foot while doing nothing but walking from one room to another, I just found it odd. Just to be sure they did bone density testig, and said it looked ok. When I went in for the wrist, they did x-rays, and nerve testing and ruled out carpal tunnel. Seeing as again there was no cause, I didn't return. I kept my GP apprised of any new symptoms.
My health started to take a more serious turn for the worse in may. I had a red spot on my right calf, and the red was radiating outward. It looked like a bug bite or maybe spider. I dismissed it since it didnt hurt. It didnt go away for a couple weeks though, and I developed a rather large rash on my left shoulder and arm after attending an afternoon baseball game on a very hot and sunny day in June. The rash was also there for weeks, and nothing I applied to it seemed to help. I started doing research on rashes, skin probs, etc. Thats when I first came across lyme disease. While I wasn't sure if I'd had a tic bite, it was very possible, since I was attending my sons baseball games quite often and deer tics are very prevalent in this area. By the time I saw my GP the rash was gone, but he tested me for lyme any, way. The test was neg and he said we should retest in 6 mos to be sure. Since then I have had more GI problems, chest pains above my heart near my collarbone, severe headaches(usually involve my neck as well and are extremely painful),scalp lesions(past 6 mos), more recently lesions on my chest, arms, wrists, hands, and fingers, Rash or hives on my knees sometimes accompanies swelling, My hands and fingers have become extremely swollen and painful most of the time with hyperflexibility in some of the fingers, or joints locking up at other times. I started to have Raynauds in my hands at first, but now in knees as well. A week or two ago I started to have sharp stabbing pains in my hands, followed by the feet, ankles and knees. My elbows don't usually hurt, but there is always swelling on the right one...looks like an RA nodule. Every time I start to feel better I seem to relapse with new symptoms and feel worse. There is swelling in my lower back with palpable masses on both sides. I can now feel something similar in the middle of my ribs left side and under ribs right side. I run a low grade fever most of the time and when I don't, will sometimes run lower than norm body temp. I have vasculitis and diagnosed high choesterol through labs. My reg labs also showed low co2 levels, but not sure what that means or what effect it causes. My o2 level is usually off the charts, as high as can be. I've had some kind of attack where my heart beat superfast, I couldnt breathe, felt cold all over and started to lose conciousness. When the EMTs came, they said my o2 saturation was almost 100%, so weren't sure why I couldn't breathe. I declined to go to the hospital at the time and slept for about 15 hours after that. I have had one similar experience a month ago, and did go to the ER. Thats when they diagnosed the Raynauds. Other than that they referred me back to my reg doc without any testing. Have occasional dizzy spells and ringing in the ears. saw a Rheumatologist after that who thought it might be lupus, but said definitely RA. He ran immuniuty testing, (ANA antibodies etc.) At the time of my 1st appointment with him, there was no eye involvement, but in the past week, I've started to have sharp pains in my eyes as well as blurry vision, and sometimes see wavy lines with lack of depth perception. All the tests at that time came back negative when I got them yesterday, but the blood was drawn a month ago!!! I was not having a flare-up at the time. Doesn't that make a difference? This time my lyme titer was equivocal, which is neither pos or neg, and I know should be followed up with a western blot test. Anyway, the Rheumatologist I saw was awful! He had not made a good impression the day I met him a month ago, and to say it went badly yesterday at follow-up would be a severe understatement!! I was nervous enough and desperate to have a diagnosis of some sort, but he glanced at the test and merely dismissed everything! He was very rude to me, uncaring of my feelings and wouldnt even let me tell him about all the new symptoms I have now which were not there at testing time! I have watched all those medical shows, where diagnosis is sooooo hard to make and how frustrating that can be, but I didn't realize how bad it would make me feel until it happened to me. In essence he was telling me there wasnt anything wrong with me along the auto-immune guidelines. I don't understand how I can now present with almost every symptom of lupus, and then be told I don't have it based solely on a lab thats 5 weeks old, not to mention that these test are not always accurate in everyone. In the past month I have started to document EVERYTHING, pictures and all. He was not interested.I ended up having a massive panick attack and leaving his office sobbing. Needless to say, I won't be returning. I am in desperate need of finding rheumotologist/immunologist, that will communicate with me and not talk down to me. I have done sooo much research, I am very informed about my health/illness, this was one of the things that didnt go right at our 1st meeting, he didnt like me asking any questions.
For now I am on the search for a new specialist. Unfortunately, I live in Southern IL, and there aren't but 2 rheumatologists in the whole area. It looks as if I am going to travel out of state and pay out of pocket to get any answers. As of today, I'm considering seeing someone in Cape Girardeau MO. If anyone has had similar problems obtaining a diagnosis with autoimmune disorders please share any info that you think may be helpful to me. I am trying to stay strong but its really hard to not get depressed when theres no hope in sight.
Thanx......:o

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6 Replies:

  • Could be Multiple Sclerosis - You will need and MRI and evoked potential testing especially. Good luck and dont stop until you get a diag.
    Anonymous 42789 Replies
    • February 25, 2007
    • 03:44 AM
    • 0
    Flag this Response
  • I am new here, and came upon this site while doing research for lupus, RA, scleroderma, lyme, etc. Its hard to decide where to start! I will start with my med. history. 32 yr old female with history of depression/anxiety. I take antidepressants, and occasional xanax for anxiety attacks. I was diagnosed with CFS after a bout with mono @age 14 that I never really recovered from and they had no other diagnosis. I learned how to deal with the fatigue, and just accepted that as a part of my life; who I was. I have a history of frequent UTIs as well as blood in my urine. I hemmorrhaged after the birth of my 2nd child and almost died. They released me from the hospital after less than 2 days. I had almost made it home when I began hemorraghing again. By the time I got home, I started to go into shock and spiked a fever of 103. my mother called the doc and they didnt even readmit me, just told my mom to get fever down. Later I was put on antibiotics to get the "infection" under control. I continued to run a low grade fever for months after. Diagnosed with reflux into my kidneys later on by a urologist after several tests to explain blood in urine, this is a lifelong condition, only treatment at the time was to be put on antibiotics for life. I declined. The UTIs werent as frequent, and when I would have one I could feel it and drink alot of cran juice.After a routine pap 3 yrs ago, theyd found some abnormal cells, and did biopsy, etc. No cancer thank God! But I had endimetriosis, uterine polyps and had abblation to remove the uterine lining, had a tubal before that. After that I started to have nightsweats all the time, but again they could find no reason for this symptom, after thyroid testing. Still have nightsweats off and on. Had an ulcer in my early 20's and was diagnosed w/ GERD, have been treated w, prilosec or prevacid ever since. The only trauma I have ever sustained was five yrs ago as a passenger in a car wreck. The car struck us going about 50mph while we were turning. This caused neck injury from whiplash, as well as back pain. Saw a chiropractor briefly, but didnt help much. After living with the pain for awhile, my GP put me on painkillers, which I currently take, while checking in with him every 3mos. I've had migraines since my late teens, which I also take med for only at the onset of the migraine. Last Feb. I started to have increased pain in my left wrist. While I'd had pain before, I just assumed it was due to strain, I used to be a waitress and bartender, so have put alot of exertion on my wrists and hands. I also thought it could be just another side effect of the car accident. At this time, my GP diagnosed tendonitis and referred me to orthopoedics. While waiting for the referral appointment, in march ,my left ankle gave out, twisted inward, and I broke my foot when I fell. I had never broken anything before. I was seen in the ER for the fracture and sprained ankle, and referred again to the same ortho clinic with an earlier appt. Some ppl thought this was funny that I should break my foot while doing nothing but walking from one room to another, I just found it odd. Just to be sure they did bone density testig, and said it looked ok. When I went in for the wrist, they did x-rays, and nerve testing and ruled out carpal tunnel. Seeing as again there was no cause, I didn't return. I kept my GP apprised of any new symptoms. My health started to take a more serious turn for the worse in may. I had a red spot on my right calf, and the red was radiating outward. It looked like a bug bite or maybe spider. I dismissed it since it didnt hurt. It didnt go away for a couple weeks though, and I developed a rather large rash on my left shoulder and arm after attending an afternoon baseball game on a very hot and sunny day in June. The rash was also there for weeks, and nothing I applied to it seemed to help. I started doing research on rashes, skin probs, etc. Thats when I first came across lyme disease. While I wasn't sure if I'd had a tic bite, it was very possible, since I was attending my sons baseball games quite often and deer tics are very prevalent in this area. By the time I saw my GP the rash was gone, but he tested me for lyme any, way. The test was neg and he said we should retest in 6 mos to be sure. Since then I have had more GI problems, chest pains above my heart near my collarbone, severe headaches(usually involve my neck as well and are extremely painful),scalp lesions(past 6 mos), more recently lesions on my chest, arms, wrists, hands, and fingers, Rash or hives on my knees sometimes accompanies swelling, My hands and fingers have become extremely swollen and painful most of the time with hyperflexibility in some of the fingers, or joints locking up at other times. I started to have Raynauds in my hands at first, but now in knees as well. A week or two ago I started to have sharp stabbing pains in my hands, followed by the feet, ankles and knees. My elbows don't usually hurt, but there is always swelling on the right one...looks like an RA nodule. Every time I start to feel better I seem to relapse with new symptoms and feel worse. There is swelling in my lower back with palpable masses on both sides. I can now feel something similar in the middle of my ribs left side and under ribs right side. I run a low grade fever most of the time and when I don't, will sometimes run lower than norm body temp. I have vasculitis and diagnosed high choesterol through labs. My reg labs also showed low co2 levels, but not sure what that means or what effect it causes. My o2 level is usually off the charts, as high as can be. I've had some kind of attack where my heart beat superfast, I couldnt breathe, felt cold all over and started to lose conciousness. When the EMTs came, they said my o2 saturation was almost 100%, so weren't sure why I couldn't breathe. I declined to go to the hospital at the time and slept for about 15 hours after that. I have had one similar experience a month ago, and did go to the ER. Thats when they diagnosed the Raynauds. Other than that they referred me back to my reg doc without any testing. Have occasional dizzy spells and ringing in the ears. saw a Rheumatologist after that who thought it might be lupus, but said definitely RA. He ran immuniuty testing, (ANA antibodies etc.) At the time of my 1st appointment with him, there was no eye involvement, but in the past week, I've started to have sharp pains in my eyes as well as blurry vision, and sometimes see wavy lines with lack of depth perception. All the tests at that time came back negative when I got them yesterday, but the blood was drawn a month ago!!! I was not having a flare-up at the time. Doesn't that make a difference? This time my lyme titer was equivocal, which is neither pos or neg, and I know should be followed up with a western blot test. Anyway, the Rheumatologist I saw was awful! He had not made a good impression the day I met him a month ago, and to say it went badly yesterday at follow-up would be a severe understatement!! I was nervous enough and desperate to have a diagnosis of some sort, but he glanced at the test and merely dismissed everything! He was very rude to me, uncaring of my feelings and wouldnt even let me tell him about all the new symptoms I have now which were not there at testing time! I have watched all those medical shows, where diagnosis is sooooo hard to make and how frustrating that can be, but I didn't realize how bad it would make me feel until it happened to me. In essence he was telling me there wasnt anything wrong with me along the auto-immune guidelines. I don't understand how I can now present with almost every symptom of lupus, and then be told I don't have it based solely on a lab thats 5 weeks old, not to mention that these test are not always accurate in everyone. In the past month I have started to document EVERYTHING, pictures and all. He was not interested.I ended up having a massive panick attack and leaving his office sobbing. Needless to say, I won't be returning. I am in desperate need of finding rheumotologist/immunologist, that will communicate with me and not talk down to me. I have done sooo much research, I am very informed about my health/illness, this was one of the things that didnt go right at our 1st meeting, he didnt like me asking any questions. For now I am on the search for a new specialist. Unfortunately, I live in Southern IL, and there aren't but 2 rheumatologists in the whole area. It looks as if I am going to travel out of state and pay out of pocket to get any answers. As of today, I'm considering seeing someone in Cape Girardeau MO. If anyone has had similar problems obtaining a diagnosis with autoimmune disorders please share any info that you think may be helpful to me. I am trying to stay strong but its really hard to not get depressed when theres no hope in sight.Thanx......:o Did the Doctor do a spinal tap along with the blood test for testing of Lyme, I had the same thing happen to me allmost to the tee, They had me on kolonipin for panic attacks, and it was not untill I had right facial paralysis, then they did the spinal tap & confirmed it was late stage lyme, you may have allready had it and got bit again then getting a worse form of it. Ask for a spinal tap asap, it was not untill I was in the fetal position shaken in pain with half a face for me & I live in a high risk area. I wish you the best:)
    digger29 2 Replies
    • February 25, 2007
    • 03:07 PM
    • 0
    Flag this Response
  • If you have to travel out of state anyway, why not go to Mayo?
    Anonymous 42789 Replies
    • February 25, 2007
    • 07:18 PM
    • 0
    Flag this Response
  • I have had a scalp condition for 4 1/2 years no diagnosis yet--- it is acne -like and never seem to heal. The only time they completely healed was after taking Zithromax ( an antibiotic for a sinus infection) They cam back and I tend to pick them off--which is probably making them worse.
    Anonymous 42789 Replies Flag this Response
  • So sorry to hear what you are going through:( ...if i were you, i would try to find another doctor-if that is possible. all your symptoms do not necessarily mean they are all related. there might be more than one thing going on. since i have an uncaring doctor also...i always leave the appointment feeling hurt...and without answers...and sometimes i do not want to go back to him, but i have no insurance and don't have a choice. i have trouble walking and muscle heaviness and pain in my legs and I am still undiagnosed after several years. if the doctor said you had RA...did he test for it or give you the results of the test?...my mother had RA and it took many yrars to get a diagnosismbecause the RA test did not get positive until later!!!...also... i looked up C02 on the web and found this from www.med-help.net "Carbon dioxide (CO2) is the gas that we exhale when we breathe. People with lung problems may have a high CO2 level. Too little or too much CO2 affects the pH (or acidity) of the body, which is a reflection of the acid-base balance in your cells. Common causes of abnormal C02: acid-base disorders (an imbalance of acid and base in the body)Relevant information can be found at http://www.wrongdiagnosis.com/c/carbon_monoxide_poisoning/intro.htm
    jjoanne 7 Replies Flag this Response
  • I would go to Mayo Clinic in Minnesota. It sounds like it may be either Lyme Disease or Lupus. It is not MS, as there are no rashes or red spots with MS.Don't buy into the Docs telling you its Chronic Fatigue Syndrome or Fibromyalgia. There IS a cause to your symptoms!
    ChrisFloridaPT 29 Replies Flag this Response
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