Discussions By Condition: I cannot get a diagnosis.

Pattern To My Symptoms, please HELP!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: tigerpaw
  • May 6, 2011
  • 07:23 PM

Back again, I'm finding a pattern to my symptoms and praying for answers. Symptoms started nearly 2 yrs ago, got worse about a year ago. That summer and over the next 6 months I did have times I had to deal with black mold. That fall me and my daughter got the flu, took three months to fully recover. In April I got Bronchitis. And 9 months later they found out I had a serious sinus infection whith white nodules. During this entire time i suffer with what feel like cold symptoms that come and go but I never get a cold.

Prior to all of that I always had extra energy, normally optimistic person.


I have what I like to call flare-ups. I' m charting it trying to get a better hold of my symptoms. On average it appears I have 7 'normal' days - other days vary between little symptoms to what I like to call crashes. On normal days I feel positive, optimistic, love life and am full of energy. I've always been very high energy.

Tests: Year ago, negative for thyroid, but I went to my own lab and it stated I had high peridoxidase (sp) 78. Did a full blood chemistry tested high for allergies. Because I had a lot of pain/burning under my ear in my neck and glands that swell now and again, they sent me for MRI and Cat Scan of neck - results are normal. Lyme negative.

Very possible I has rheumatic fever as child.


Symptoms come and go, some can lasts hours, while others last days:
anxiety

ear ringing lasts about 1 minute, mabe once week.

itchy during day, apparently I scratch my legs while sleeping

Joint pain (have had since 17) knees shoulders

neck pain/burning left side only - normally under ear

muscle twitches under rib, calf area - left side only

dry/soar throat can last two weeks

jaw tightness, pain, sometimes under left eye

starving - could eat almost anything usually lasts week, other times I could care less if I eat

head pressure, more often than not. Mostly mild, but when it's bad I can't think/focus. Starts in back of sculls and goes through entire head.

Allergy symptoms - itchy eyes for day, chest feels congested, sneezing. Positive allergy test but they never said to what.

Exhuasted! I refuse to sit on the couch - so I push myself through my day getting little done - the worst can last 4 - 7 days.

Some mornings sounds like the blood is rushing back in my head when i sit up
mild ear popping



Hypoglocemic episodes, normally on my 'starving days', even if I eat.

Memory loss

Warm flush feeling in face - sometimes mild fever

pain left foot about two weeks now, comes and goes.

Eyes feel gritty now and again, usually couple times of month last good few hours.

ALWAYS have low blood pressure 90/50 - they always make a big deal about it, but then they don't look into it.
So far what I've come up with as some times it's hard to chart symptoms especially if some are in your sleep: starts with nightmares for a night or two, then I get super tired, feel generally crappy, soar throat, possible neck/burning feeling, sometimes spreads to left upper jaw, behind left eye. Usually have head pressure same time, soar throat, feels like it's swollen on left side - super thirsty!!!! As these symptoms increase I get depressed, irritable, frustrated, can't focus.

I'm crashing again, started being tired last week. Soar/dry throat two weeks now. This morning when i sat up, it sounded like the blood was rushing back into my head. This has happened before. Sounds sort of like the sound you hear in your ears when you are underwater. This usually predicts i'm going to have a 'bad' day. Feel like a walking zombie, finger tremors left side lasted about 1/2 minute. Head achey/pressure feeling, tired. Hard to focus. Soar/dry throat. Mentally; nervous, irraitable, bummed out, shaky feeling. Face felt flush and warm, but temp seems normal. Achey tight jaw.

I know many said Fibro but honestly, pain is NOT the main factor. Also I don't have pain pressure points. The joint pain I've had 17 yrs, and you almost can feel the knee or shoulder popping out of place. From what I've read, Fibro does not cause swelling and fluid in joints. I'm defintiely having some kind of auto-immune flare ups. Frustrated with the Dr's and won't go unless I have some kind of solid proof of what I have. The specialists I have seen feel I do have something wrong, yet my PA's and general Dr's dismiss all my symptoms.

Big question _ did the black mold set this off? You read the sites and they make it sound horrible if you come in contact with it, ( a good portion of my symptoms) yet it seems once you are away from it you should recover. I want to spend the $400 to be tested for mold, but not sure if I trust these sites and being just back to work can't afford to lose the money.

Most replies said I could have Grave's disease - Hashimatos - but I suggested that to my Dr last year and she laughed. I have no insurance and can't afford to do much on my own but research. Sick of Dr's telling me nothing is wrong.

Any help is so appreciated! I want my life back! Thank you all so much.

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  • then I get super tired, feel generally crappy, soar throat, possible neck/burning feeling, sometimes spreads to left upper jaw, behind left eye. Usually have head pressure same time, soar throat, feels like it's swollen on left side - super thirsty!!!! As these symptoms increase I get depressed, irritable, frustrated, can't focus. I'm crashing again, started being tired last week. Soar/dry throat two weeks now. This morning when i sat up, it sounded like the blood was rushing back into my head. This has happened before. Sounds sort of like the sound you hear in your ears when you are underwater. This usually predicts i'm going to have a 'bad' day. Feel like a walking zombie, finger tremors left side lasted about 1/2 minute. Head achey/pressure feeling, tired. Hard to focus. Soar/dry throat. Mentally; nervous, irraitable, bummed out, shaky feeling. Face felt flush and warm, but temp seems normal. Achey tight jaw. Sounds to me like a Chronic fatigue immunity dysfunction syndrome (also known as CFS or ME) crash. That is very similar to how some of my crashes with it are. Many CFS patients get nightmares with crashes too (I think ones subconsciousness knows when one is entering a crash period and about to get very unwell). People who have just FM dont tend to get sore throats with it unless they have got the often coexisting ME/CFS with it too, with your symptoms it doesnt sound like you have just got FM. Black mold is a KNOWN TRIGGER for ME/CFS and once someone has had an exposure in which they've reacted to the black mold, one becomes HIGHLY sensitive to it and can be reacting to it all over the place. Those who have the illness caused by black mold...commonly end up moving locations or even states to try to get away from it. There is several who have ME/CFS who had it all triggered off by black mold at the phoenix rising CFS site. Ive heard a book recommended in the past called "Mold Warriors" about all this kind of thing. .......... Richie Shoemaker has a eye test out which shows how affected someone is by neurotoxins (what the black mold gives out). Ive done this test online and its a good one (and cheap.. when one is affected by neurotoxins ones eyes ability to pick up colour contrasts are affected.. and that is what the test checks for). If you do a search for Richie Shoemaker's neurotoxin test you should be able to find it............. 86% of patients with CFS/ME have low BP (if not low, the rest of them they tend to have dysregulated BP). So your low BP issue fits too.http://wwcoco.com/cfids/bernesx.html I strongly suggest to take care as you seem to be at the beginnings of CFS/ME (when you have more chance of recovery from this illness) but are the highest risk of getting a big crash in which you may not recover well from at all. I was at the point where you are now in the first year of the illness and crashed bad from doing too much with the illness.. completely bedridden and couldnt take care of myself for 9mths after that. 14 years later.. im housebound. You need to find yourself a CFS/ME specialist as soon as you can to have the best chance of recovering. (those who have it over 2-3 years.. rarely ever make a full recovery... fortunately it sounds as if you dont have it severely).
    taniaaust1 2267 Replies Flag this Response
  • The joint pain I've had 17 yrs, and you almost can feel the knee or shoulder popping out of place. From what I've read, Fibro does not cause swelling and fluid in joints. I'm defintiely having some kind of auto-immune flare ups.. That part of your post and the ME/CFS symptoms, makes me wonder if you also have got Ehlers-Danlos syndromes (EDS). There is a subgroup of people with ME/CFS who have EDS... having it seems to predispose some people to ME/CFS EDS people get joints popping and pain in joints... if you have that illness you will be more hypermobile in your joints then most people. http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome
    taniaaust1 2267 Replies Flag this Response
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