Discussions By Condition: I cannot get a diagnosis.

I need help...from anyone who has time

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: FixMEdoc
  • January 30, 2007
  • 08:26 AM

I have a great deal of symptoms and am wondering if, at least some, aren't connected to one another. I have been to Drs. occasionally, when one symptom gets bothersome enough, and they either do bloodwork, and say "No Worries...Everything is fine...Eat less carbs...Eat more protein...change your excersize habits....and so on", or take a stab and treat me for whatever seems should be the most likely cause. This has caused me a lot of frustration, and has made me very reluctant to bring things to the attention of a Dr. because I hate to be perceived as being in need of attention in some way, and when I'm told, "Don't worry...You look fine," they might as well say, "You're really making something out of nothing...now be a good girl, and go home."

Okay...to start...when I was in my teen years, I started feeling exhausted all of the time. For the next few years, I'd bring it up when I'd see a Dr. for something, and get bloodwork and one of the replies mentioned above. Two years ago, after years of this horribly overwhelming, and constant, exhaution, I went to a Dr. and said, "Look at me. There is something wrong. I can not stay awake. I can sleep for days on end. I can not drive a car 3 miles without dozing off..repeatedly. There is nothing wrong with my diet, my thyroid, my sugar level, so there's no need for bloodwork. You have got to help me." At that point, he was ready to hand me off to someone else :) and sent me to a sleep specialist where I had a 24 hour sleep evaluation. Every 2 hours, they allow you to lie down(and if they see you start to doze off between they come and get you on your feet) for 20 min. to see how fast you fall asleep each time. I averaged less than 2 min., with one time being 45 seconds. I was diagnosed with Narcolepsy and put on Aderall, and am now on the maximum legal dose, which gives me, generally around 8-10 awake hours per day.

Also, about 2 years ago, I started having this discomfort in my upper right abdominal quadrant(actually, that was what I'd seen the Dr. who sent me for sleep study for). A G.I. Dr. did and ultra-sound of my gallbladder, said everything looked fine, but put me on belladonna for my "gallbladder pain" anyway. Last year, I was putting on make up, and all of the sudden I had this excrutiating pain in the same area, that I could not find relief sitting, standing, lying...I went to the ER, was given several doses of Demoral(which hardly phased the pain..this was like giving birth pain). After several hours, the pain just stopped, very suddenly. The ER Dr. said he didn't know...maybe a gallstone.

In November, I said to my husband(jokingly) that I thought I might have arthritis because my shoulders, wrists, and fingers would hurt intermittently and then my toe joint started really hurting bad. A day or two later, my daughter noticed that my toes were turning purple, while I was standing one day. I didn't worry about it, but it started happening every day, and then was almost constant when I'm sitting or standing. At this same time, I got these itchy bumps on the bottom and ends of my toes that itched like crazy at night. They disappear as quickly as they come, but there is still visible scarring when they "go". Plus, I started to lose sensation in my toes, then feet and my calves started also turning purple. My legs and feet get horrible cramps, day and night, but more at night.

I also have a lot of pain in my hips now.

Then, my vision got bad, very quickly, and I've lost a lot of depth perception..night vision is horrible. I'd always had 20/20.

Right after Christmas, I sat down at the computer, maybe 5-10 min. When I went to get up, I fell right back in the floor. I thought that I'd somehow tripped, but when I went to pull myself up, I realized that I could not feel my legs or feet at all, like they were asleep. I pulled myself up, supported by the chair and table, and my feeling gradually came back, but I had no "pins and needles" sensation, like when a part "falls asleep". This also happens to my hands and arms at night now.

Near the end of December, I started having horrible night sweats, waking several times during the night, drenched. This had never happened to me before.

About the same time, I started getting very fevered, or my skin was very hot on my thighs, torso and neck in the evening. I was having trouble getting out of bed at all.

I finally decided that I'd bite the bullet and see a Dr....again(with a little encouragement). I explained what was going on...they checked my blood pressure- 90/60, he noticed that my pulse was weak in my feet. He told me that he'd probably need to refer me to a neurologist, but would run some bloodwork first.

Since they told me that they'd call w/ results, after a week, I called to see if I could find out if anything. He'd been on vacation, since after my appointment, and the he'd need to deliver the results himself. I coaxed out of the nurse, that my white blood cell count was low....3.2, and everything else looked fine. She said we definitely need to find out what's going on.

After another week and a half, my husband called the Dr. to see if we could find out what our next step was. He never returned our call, so he took me to the ER, where they informed me that my white blood cell count was up to 5.4(possibly due to the bladder infection that they also discovered while I was there)....and suggested I follow up with a regular physician.

I am at my wits end. I'm 27 years old and am not overweight(110-115 lbs.). I have had to leave a career that I'd worked very hard to establish, and as a result, have had to send my 3 girls to live with my ex-husband, as I was the sole provider for our family and my husband was a stay at home caretaker(which worked great for us...until I couldn't work and he doesn't have the experience to jump into a lucritive career). I've lost everything, and am living in government funded apartments, in the worst part of town, and have not seen my babies since Christmas Eve. If this illness doesn't kill me, the heartache that is causing me surely will.

I know that this is long...but I'm desparate, and grasping at straws here. I thank(profusely) anyone that has taken the time to read this, and anyone that might have some insight. God Bless All ~

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11 Replies:

  • Sorry to hear about your troubles...there are a few questions I'd like to ask. Have you had mono? Sometimes Epstein Barr virus stays inside you and can cause Chronic Fatigue. Do you live an a lyme infested area? Lyme can cause some of your symptoms as well. How is your digestion? Do you have any trouble with gas/bloating, diarrhea, constipation, nausea/vomiting? Are you currently taking any medications? Do you take supplements? Are you on birth control? Do you have a history of antibiotic use? In Chinese medicine some of your symtoms seem related to a Liver imbalance. But there is more going on, and I need more info to say. From a Western standpoint it sounds autoimmune. Please check out this website and take their questionnaire: www.wholeapproach.com. This will tell you if you may have candida concerns. We all need to demand more from our Doctors. Demand to see and get copies of all the blood work they have done. You have a right to know what they have tested you for. Stay informed and do research...mostly, don't let a doctor just shrug this off. Find one who will listen to you. I also suggest trying an alternative approach. If you are on a limited budget (yes, sounds like you are) - do you live near a large city? Sometimes you can find alternative practitioners who offer sliding scale fees. Please check this out and consider acupuncture or some other form of complimentary medicine. Hope this helps.DOM
    acuann 3080 Replies
    • January 30, 2007
    • 03:34 PM
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  • I can't figure out if I have the ability to send you an email or not, so I hope that this makes it to you. YES! I had mono....and now that I think about it, it was the same year I remember feeling the exhaustion. As far as digestion, I have been diagnosed with IBS. I take 40mg of Prozac per day and 80mg of Aderall- Just started taking a multi-vitamin again and vitamin C Birth Control- I have had the Mirena IUD for 3 1/2 years Antibiotics- YES! Not as frequently in the past couple of years, but for about 6 years I got chronic upper repiratory infections(about every 2 mos.) My liver enzymes show that they are Okay As far as a limited budget, I am, but my father will pay for whatever medical treatment I might need. I find it ironic that when I'm so sick, I can't work, and, for the first time ever, am w/o medical insurance. I REALLY hope this makes it to you! If anyone else can give me tips on how to send an email, I would be so appreciative:)
    FixMEdoc 53 Replies
    • January 30, 2007
    • 05:49 PM
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  • Have the doctors ruled out ciliac's disease, diabities type 2, and fibromyalgia? Those are the ones that come to my mind at the moment that can cause at least some of those symptoms, if not more, and are frequently missed by doctors.
    jackrorabbit 113 Replies
    • January 30, 2007
    • 07:17 PM
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  • Hi, acuann here. Adderall and prozac should NOT be taken together.Here is the scoop on the meds you are taking:Drug-Drug Interactionshttp://www.drugs.com/xq/cfm/pageID_1150/int_1/list_1/values_drugid%3Dd04035%26drugid%3Dd00236%26/OpText_Prozac/dr_%2CAdderall%2CProzac/qx/images/s1.jpgfluoxetine and amphetamine-dextroamphetamine (major Drug-Drug) Description: GENERALLY AVOID:Several case reports suggest that patients treated with serotonin reuptake inhibitors (SRIs) may exhibit an increased sensitivity to sympathomimetic agents. The mechanism of interaction is unclear. The reaction has been reported when fluoxetine was used concomitantly with phentermine, amphetamine, or phenylpropanolamine. Additionally, some sympathomimetic agents (e.g., amphetamines) may possess serotonergic activity and should generally not be administered with SRIs because of the additive risk of serotonin syndrome, which is a rare but serious and potentially fatal condition thought to result from hyperstimulation of brainstem 5-HT1A receptors. The interaction occurred in a patient treated with dexamphetamine approximately 2 weeks after the addition of venlafaxine. The medications were discontinued and the patient was given cyproheptadine for suspected serotonin syndrome, whereupon symptoms promptly resolved. A second episode occurred when dexamphetamine was subsequently resumed and citalopram added. The patient improved following cessation of citalopram on his own, and residual symptoms were successfully treated with cyproheptadine. MANAGEMENT:In general, amphetamines should not be combined with serotonin reuptake inhibitors. Close monitoring for enhanced sympathomimetic effects is recommended if these agents must be used together. Patients should also be monitored for signs and symptoms of excessive serotonergic activity such as CNS irritability, altered consciousness, confusion, myoclonus, ataxia, abdominal cramping, hyperpyrexia, shivering, pupillary dilation, diaphoresis, hypertension, and tachycardia.The above is from www.drugs.com. This is alot of info, but you get the general idea. Please find a doctor who will listen to you and work with you to wean off of these meds. I believe they will seriously harm you if they haven't already! Also, please visit this website www.acufinder.com and take their questionnaire. This website has lots of info on Candida overload, which I suspect you have. Doctors don't think this is an issue, but I see it a lot in my practice. The website sells candida cleanses, but I haven't tried them and can't vouch for them. The best candida cleanse I have found is called Threelac, and you can google this for more info. I hope this helps you and good luck!DOM
    acuann 3080 Replies
    • January 30, 2007
    • 07:28 PM
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  • I had NO IDEA! The same Dr. perscribes both: 1 for Narcolepsy and 1 for Hypnogaugic Hallucinations and sleep paralysis(I also suffer from depression and anxiety disorder, which I'm not symptomatic of on SSRI, but severly affacted by, otherwise). The problem is, w/o the amphetamine, I get maybe 2 hours of "awake" time per day & sleep paralysis and hypnogaugic hallucinations are severe. I do suffer many of the symptoms, but many were present before the meds were taken together(with the exception of, when I'm relaxed, the uncontrollable muscle twitches, some small, and some affecting several muscle groups conjunctively). About Candida....would that not make me presidposed to typical vaginal "yeast infections"? I have only had 1(when pregnant and on an anti-biotic)....or, does Candida in your system make you more resilient to typical symptoms? Also, I checked my heart rate a moment ago....128 BPM You don't know how much your advice has given me hope, that the possibility of finding some direction is possible. I was about ready to just check into a mental health institution, because I know, if there is nothing seriously wrong with me....well, then I'm just down right in need of some serious mental evaluation and treatment. It's so aggravating to be the type of person that is too proud, in the first place, to seek help for a problem, only to be treated like a silly little elementary school child, whining from a mysterious tummy ache that needs some mommy TLC. I just want to find out what is wrong, what I can do to improve my quality of life, and move forward. Thank you so much, Again!
    FixMEdoc 53 Replies
    • January 30, 2007
    • 09:24 PM
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  • Diabetes has been ruled out ~ I don't have symptoms of Ciliac's Disease....BUT, I just read symptoms of fybromyalgia and I could be the posterchild! I'd not mention before that in August of 2005, I started having severe muscle spasms in my back and neck....I was in excruciating pain all of the time, and for 5 months, couldn't stand upright, but had to walk leaning forward, with my right shoulder turned front. It was just ridiculous. I saw a Physician and my husband took me to 2 different ERs. The physician sent me to physical therapy(which did not help) and then an ER Dr. referred me to a pain management specialist. I had epidural cortizone injections every week for 3 weeks, and after about another month, the pain subsided. It has only recently started to return. I was diagnosed with having degenerative disc disease(which I really don't think should be called a disease, since everyone eventually has disc degeneration...but that's neither here nor there...anyway) and, after an MRI, was told that I had 6 pinched nerves- both sides in three places. Another thing....I have been diagnosed with fibercystic breast disease(also, not REALLY a disease) and have had an intermittent pain in my lower right abdominal quadrant for 8 years, that is significantly worse during menstruation. Nothing found in ultrasounds, so I got a guess diagnosis of fibercystic ovarian disorder. I had one PAP come back showing irregular cells, after my 3rd child at 6 wks in 2002, but was fine one month later. I have been diagnosed with HPV, but have had no symptoms in almost 9 years. I get headaches(started about 2 years ago) generally every afternoon. I've had 2 migraines that, after days of getting worse, vomiting, and being able to do nothing other than lie on the cold bathroom floor, I went to the ER and got a dose of Demoral/Phenergren.
    FixMEdoc 53 Replies
    • January 30, 2007
    • 09:46 PM
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  • Well, if you can, please try to see an acupuncturist to help you, or if you can't find one near, try to see a chiropractic who also does kinesiology. Just so you know, some women have lots of problems with the mirena IUD, and even the copper IUD is a problem. Consider getting off the hormones altogether and trying condoms or a diaghrapm. I had a copper IUD and was fine for about 4 months, then all ***l broke loose with 15 day heavy bleeding and lots of PMS - and this was without the hormones! Drink lots and lots of water daily and cut out all sugar from your diet. Best wishes,DOM
    acuann 3080 Replies
    • January 30, 2007
    • 09:58 PM
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  • Will do! I'll find an acupuncturist tomorrow. Also, can you give me any advise on a good product for ridding my body of Candida...it's worth a shot(unless not having vaginal yeast infections rule out it being a real concern). I do drink bottled water. I also have insatiable carbohydrate cravings, and it takes a lot to balance protein and carbs. I hadn't heard of many problems with the Mirena IUD(although I have heard many with copper), and chose it due to convenience. I'll probably wait until I'm due for removal(next year) and just go with a tubal(unless I feel much better, on a path to recovering my financial losses due to my illness, and am up to having 1 more child..then I'd just go with a diaphram). At least I have some direction with some open paths. I was growing weary of being promptly dead-ended.
    FixMEdoc 53 Replies
    • January 30, 2007
    • 10:27 PM
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  • Threelac is an excellent product for candida. It's easy to use and although it is expensive, comes with a money back guarantee. You don't have to have yeast infections to have candida...mine usually manifests as chronic sinus problems. Candida is associated with migraines, fibromyalgia, chronic fatique, sinusitis, lowered immunity, IBS and much more... www.candidasupport.org is a great site and they sell it directly, I think. Try to get the Oxygen Elements too as this works synergistically in ridding the body of candida overgrowth. Craving for simple carbs is the hardest thing! Try to cut out most white flour, processed products, sugar and alcohol. best of luck and you are on the right path!DOM
    acuann 3080 Replies
    • January 31, 2007
    • 00:40 AM
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  • I too am having problems with nacrolepsy type symptoms as well as severe abdominal symptoms and also been previously treated for mental disorder type symptoms. I currently am diagnosed with hypothyroidism and perscribed synthroid. Meds have improved general overall health but abdominal symptoms still present.I have recently had a colonoscopy, endoscopy, fluoroscopy, blood profiles, ct scans of abdominal region. I am still awaiting fluoroscopy results but all other tests showed normal. Polyps benign and removed from colon and esauph. There seem to be a large amount of other people suffering from simular symptoms on the I can't get....board. There are 5 running right now, maybe more.Sever abdominal painDr hOuse?Help for my 5 yr old and morePlease read these threads to look for simulariites.
    Anonymous 42789 Replies
    • February 7, 2007
    • 08:31 PM
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  • THANKS...I'll check it out! Though I hate for anyone to have to suffer from the same things that I am, it VERY REASSURING to hear that I'm not alone. I know it sound cliche, but no one understands what I'm going through.And....the most frustrating part is that people will tell me things like, "Oh..you probably just need more vitamin supplement"...or "a different excercise routine"...or "your probably just stressed out". HECK YEAH! I'm stressed out :eek: I have all of these things going on with me and YOU GUYS want to tell me to change my diet and excercise and maybe drink a tall glass of OJ in the morning. Last week, my husband told me that maybe I needed to take more vitamin C...I about came unglued, and had to separate myself from him for awhile. I explained that I know he means well, but when he suggests those simple changes might just make everything better, he makes me feel the same as the Drs. who seem to want to slap a perscription in my hand to "fix" a symptom and slap a "clean bill of health" on my head and tell me I'm perfect.As far as narcolepsy, I'm not so sure that my diagnosis is completely accurate, and may be linked to something else. I read something the other day about mono causing "chronic pain in the upper right abdomen" and "chronic fatigue syndrome".
    FixMEdoc 53 Replies
    • February 8, 2007
    • 01:24 AM
    • 0
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