Discussions By Condition: I cannot get a diagnosis.

Porphyria... CFS... Fibromyalgia... Cancer.. Ring around the rosy!

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • July 10, 2009
  • 07:18 PM

Hi, I am 20 years old. I have been to countless doctors. I'd like to list my symptoms, then ill provide some background info, and what tests ive had done.

Symptoms:

Strange marks - White lines, that feel like tunnels if you press your finger on them, that turn purple/normal skin color sometimes. An interesting thing that happened, was for some reason i pressed on one of these. It made a popping noise, and disappeared. These only appear on my legs. most are on the knees

I am NOT, and have NEVER been over-weight. I have had so many people tell me they are stretch marks.. and they are not.. no way at all.

Severe Stomach pain - This is where my problems first started, I went to work, came home and had a gross fungus on my tongue (which ill talk about later) and a rash, then later that night i got very bad stomach pain which hasnt gone away since

EXTREME limb pain - I have different pains in my limbs, burning, stabing, throbing, and they are all severe. It is getting worse and worse every day, and i have even considered a wheelchair.

Heart problems (Tachycardia) - My heart is almost ALWAYS in a Tachycardia state. I have been told by doctors that it is "eractic" and on an ultrasound, it showed that my heart is beating so fast that the valves dont close comepletely. Sometimes it will go down to normal for a few seconds, then back to beating extremely fast

Neuropathy - My hands, go bright red, and have weird white spots all over them. and that lasts for a lnog time, during this my hands go numb, and feel like they have fallen asleep.

I also get that same feeling in my feet, and even my ears

Shortness of breath - I can not even walk up the stairs, I have tried to get back into bike riding for exersize but i have to stop for like 20 minutes every 10 minutes, so i hardly get anything out of it.

"Brain Fog" - I can not remember, ANYTHING, nothing. I feel like i am 100 years old. I also cannot concentrate on things easily

Salt Craving - One of the weirder symptoms, I eat a TON of salt. people actually dont like to eat around me because they say the amount of salt i eat is "Sickening"

If i dont have salt for awhile, i become angry and fustrated and lash out at people, and say things that shouldn't be said.

And yet my doctors say everything is fine... anyway, tests that i have had done -

Lupus - Negative.
Negative for all STD's
Celiacs Disease - Negative
Sleep apnea has been ruled out

Sadly, these are all the tests ive had done. These symptoms started and came on slowly, since 5 years ago. But i have had a lot to do with school and work, and so my health has had to take a backseat for a long time.

I am looking forward to having more doctors visits, so i can get some more tests done.

Any help would be greatly appreciated, I am so desperate, i have my whole life ahead of me and i dont want these medical problems to continue.

Thank you in advance for any help, and for yout time reading and commenting



*accidently hit Enter, ill finish this post and edit in a few minutes*

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9 Replies:

  • Forgot to add some things ive been tested for, but when i went to edit it again, it said i couldn't. *Sigh* :( Cancer, has been checked for, and doctors have said its highly unlikely. so im not worried about that. Fibromyalgia and CFS have also been suggested... and they look likely. But the one i am looking at the most, is Porphyria. I think it matches my symptoms VERY well. My doctor has said its possible aswell... so im looking for some opinions. But, you never know. i could have something besides porphyria.. fibro or CFS, so please suggest anything that you feel fits. Thank you
    Anonymous 42789 Replies Flag this Response
  • Forgot to add some things ive been tested for, but when i went to edit it again, it said i couldn't. *Sigh* :( Cancer, has been checked for, and doctors have said its highly unlikely. so im not worried about that. Fibromyalgia and CFS have also been suggested... and they look likely. But the one i am looking at the most, is Porphyria. I think it matches my symptoms VERY well. My doctor has said its possible aswell... so im looking for some opinions. But, you never know. i could have something besides porphyria.. fibro or CFS, so please suggest anything that you feel fits. edit: The fungus i was talking about on my tongue, is Thrush. sorry, im really tired and forgot to add a lot to the post, If theres anything i have forgotten, it will be added in a reply to somebody elses post. Thank you
    Anonymous 42789 Replies Flag this Response
  • White lines, that feel like tunnels if you press your finger on them, that turn purple/normal skin color sometimes i know you said they are not stretch marks but that really does sound like stretch marks when you describe that colour.. mine go purple some times but are usually white. i know some slim people who have got stretch marks (developed in teens when they were growing fast). EXTREME limb pain - I have different pains in my limbs, burning, stabing, throbing, and they are all severe. That could well be fibromyalgia by that description of the pain (i used to have fibromyalgia myself). I suggest you read http://www.prohealth.com/fibromyalgia/basics.cfm?anchorid=24&#-24 . a quarter of those with fibomyalgia have CFS.. With CFS patients.. over 50% of us get fibromyalgia...........Shortness of breath - I can not even walk up the stairs, I have tried to get back into bike riding for exersize but i have to stop for like 20 minutes every 10 minutes, so i hardly get anything out of it. Sounds like CFS. With CFS esp with exercise.. many different symptoms can happen including shortness of breath. (I have CFS and for me it can be like im suffocating). Severe Stomach pain - This is where my problems first started, I went to work, came home and had a gross fungus on my tongue (which ill talk about later) and a rash, then later that night i got very bad stomach pain which hasnt gone away since CFS can be triggered off by many things. Much of the recent research is showing that it can start off with a stomach virus. The fact you get all those various symptoms including the tachycardia and also brain fog... points to CFS. (i dont know anything thou about porphyria thou). CFS people can have low immunity and can get thrush issues too. Neuropathy - My hands, go bright red, and have weird white spots all over them. and that lasts for a lnog time, during this my hands go numb, and feel like they have fallen asleep. my hands do that too in two different ways. In one way i get wee white spots all over my palms and palm side of the fingers (i dont know why that happens). The other issue that happens with white spots is when I get Raynard's syndrome in my hands and in which case my hands will go bright red and get white patches in my fingers and go numb (they can get to the point where they go all stiff and i cant even drive a car with them). (People with CFS commonly also get Raynauds). i suggest you check out http://wwcoco.com/cfids/forms.html (a very good CFS also called CFIDS symptom list, which notes many of the symptoms most dont realise happen in this illness along with the percentage of us which get them). "Systemic yeast/fungal infections: 30-80%" You'll see thrush etc is noted on that list. ............. The salt craving you have is a bit of a concern as with CFS.. a third of us with CFS have low cortisol (non life threatening Adrenal insufficiancy) or adrenal dysfunction where cortisol is being disregulated. Salt craving can be a sign of Addison's disease (which is when the adrenals completely fail.. this can be life threatening). It is highly important that you get a doctor to give you cortisol testing. With CFS it is often the morning cortisol level which is low. (with myself i get normal cortisol readings if a single blood test is done but my cortisol is below, out of the normal ranges when 24 hr urine testing is done so it must get very abnormally low at other times). i tend to crave salt at times. i hope my post has helped.
    taniaaust1 2267 Replies Flag this Response
  • this almost sounds like thyroid? I woke up one day and could barely walk and got short of breath. Fast heart beat pain above the heart (muscle) after 6 months of heart test, one Dr touched my throat and I had nodes on my thyroid. Ended up with 6 nodes and a complete thyroidectomy three years ago. I had hyper but had alot of hypo symptons of hypo such as fatigue and discoloration of feet and hands.Make ! them take a test of both tsh and t-4 and people are different, as mine was on the " border" for years and they never thought it to be a problem?I have fibromyalgia also
    Anonymous 42789 Replies Flag this Response
  • Many posts sound like TMS; please google "TMS Help Forum." You are 100 percent curable!
    anniess 1 Replies Flag this Response
  • You should be checked for parasites as soon as possible.. With stool samples,urine sample,skin scrapings for all parasites. I know no one likes to believe they could possibly have any such thing, but around 40 to 50% of the earths population carries some type of parasite but never know it. The tunneling and the fact you hear a pop could a certain type of worm infestation along with the redness and swelling. Good luck hope this helps
    Anonymous 42789 Replies Flag this Response
  • Wow. It sounds like you have a lot going on and you need a big old tune up. Have you been checked for Vitamin D deficiency and vitamin b 12 deficiency? I'm sorry to tell you this, but it absolutely doesn't matter that you've tested negative for celiac disease. There is 'subclinical' celiac disease that can affect you just as much as celiac and you will never know that you have it unless you just go gluten free for 2 months and see what happens.Once someone is 'gluten sensitive', they get all sorts of other problems that go along with it due to a damaged intestinal tract:candida overgrowthparasitesh pylori infectionadrenal gland fatiguenutritional deficienciesYour brain fog is likely gluten sensitivity and/or candida overgrowth or h pylori as a result. Your salt cravings are CLASSIC adrenal gland fatigue and your doctor will NEVER test you for that, nor know what to do if he did! Fatigue could be vitamin b 12 deficiency from malabsorption. Pain could be from vitamin D deficiency. Go off gluten- PLEASE!!!Kerri Knox, RNFunctional Medicine Practitionerhttp://www.easy-immune-health.com
    kerri38846 11 Replies Flag this Response
  • this almost sounds like thyroid? I woke up one day and could barely walk and got short of breath. Fast heart beat pain above the heart (muscle) after 6 months of heart test, one Dr touched my throat and I had nodes on my thyroid. Ended up with 6 nodes and a complete thyroidectomy three years ago. I had hyper but had alot of hypo symptons of hypo such as fatigue and discoloration of feet and hands.Make ! them take a test of both tsh and t-4 and people are different, as mine was on the " border" for years and they never thought it to be a problem?I have fibromyalgia also good post. i suggest thou to get not just the TSH and T4 tested but T3 as well. (T3 sometimes shows up thyriod issues in CFS so a T3/T4 test can be important) i say that cause thyriod issues are more common in CFS patients (can be a coexisting illness) CFS can cause low thyriod issues or occassionally a dysregulation in thyriod hormones (where some may have trouble with both high and low thyriod hormones..eg it can be one way and then switch). You do need thyriod issues ruled out. best luck
    taniaaust1 2267 Replies Flag this Response
  • I can see that no one responded to the porphyria possibility. I don't know much other than my dr is also looking into for me. First, I'm doing the urine test when I'm having lots of symptoms. He says that one more likely finds the genetic kind. Then, again with a high reactive state, I'll get dextrose IVs 4 days in a row. That is supposed to bring the symptoms down quickly. I'll do that in the next few weeks. I'm curious what you found out.
    Anonymous 1 Replies
    • February 8, 2014
    • 05:41 AM
    • 0
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