Discussions By Condition: I cannot get a diagnosis.

Can anyone help?

Posted In: I cannot get a diagnosis. 31 Replies
  • Posted By: nikilotta7
  • March 1, 2008
  • 03:07 AM

I'm 28 and my medical file looks like an 80 year old. I'm hoping that someone will read this post and be able to help me go in the right direction. My new gp is already giving up on finding out what is wrong with me. Over time like a snowball rolling down hill my symptom list has kept growing. I am a crafter and make jewelry and my latest symptoms have altered that joy from me. I'm constantly dropping things, or simply too tired to do what I love.

Symptoms:
Extreme daytime drowsiness
Undiagnosed ear pain one ear
Muscle Weakness
Urinating blood clots
Daily Headaches
Migraines averaging 4 times a week
Extreme bone pain in legs
Moderate bone pain in forearms
Change in balance and hand/eye coordination
Change in speech patterns, memory, concentration
Loss of bladder control
Blurred vision comes and goes in one eye
Dip in lower back pronounced
Pins and needles in arms/legs
Occassional numbness
Extremities feeling cold
Sleep paralysis
Vertigo
Ears ringing/buzzing/pouding
Dizziness w/ nausea like motion sickness
various pcos symptoms that I would rather not mention..
pleurisy 2x
recurrent anemia


My past medical history includes:
Surgery: Subtotal Colectomy (colon removal) for Toxic prolapsing megacolon age 20, Appendix removal age 20, Gallbladder removal age 26, 2 knee surgeries age 18
Major illnesses/diagnosis: Lymes Disease (age 6), Insulin-resistant PCOS age 25

My bloodwork comes back within normal range, no infection, sinus xrays clean, chest xrays clean, abdominal ct okay. My new gp has referred me to ob/gyn, urologist, neurologist, balance institute, etc. It is getting ridiculous. I have urologist and neurologist next week. Ob/gyn things checked out okay.

I also have to state that due to the pcos I can gain or lose 20 to 40 lbs in a single month. I never change my diet. I'm always health/weight conscious but doesnt help. I stick to a good carb vs bad carb plan, drink approx 8 bottles of water a day and 1 glass of soy milk, take daily vitamins plus iron, magnesium, potassium, and herbal teas to help soothe nausea.

Reply Flag this Discussion

31 Replies:

  • Have you been tested for MS? My niece has your same symptoms.Hang in there and don't give up.Teresa
    TeresaC 41 Replies Flag this Response
  • At this time I haven't. Mostly because I spent 3 years with a doctor practice that ran me around and thought I was just complaining of depression pain. My uncle who shares a majority of the symptoms just had a muscle biopsy and everything came back inconclusive. :confused: However he did have a two or three lesions on his mri. Thank you for your comment and support. :) Have you been tested for MS? My niece has your same symptoms.Hang in there and don't give up.Teresa
    nikilotta7 43 Replies Flag this Response
  • I was waiting for that lol.
    nikilotta7 43 Replies Flag this Response
  • Also in my symptoms I forgot to mention that I have become almost glow in the dark pale with huge black circles under my eyes. I look like I dont sleep but it seems like I sleep alot.
    nikilotta7 43 Replies Flag this Response
  • No I did not post on lymenet. No I don't think you get a kickback. However I am not lyme positive. Because of my history I have been checked several times. The only reason I wrote about it in my previous history was that the tick that bit me in my ear happened to be biting on a nerve. It caused paralysis, brain damage, and I have no memories prior to that age. So therefore it is relevant to my past medical history. Thank you for your opinion.
    nikilotta7 43 Replies Flag this Response
  • You say your uncle is affected by similar symptoms. Maybe there is something genetic going on. Have you talked with a geneticist?
    aquila 1263 Replies Flag this Response
  • Get the MRI of brain and spine. Lesions r the #1 diag. used for MS. Or get checked for Lupus. I have been in your boat for 7 years. I now have new doctors that jumped right in with all new test and r getting the job done.
    Anonymous 42789 Replies Flag this Response
  • We do believe there maybe something in common. Unfortunately my symptoms cover almost every body system. So I may have more than one thing that is working against. I was just discussing a geneticist with my grandmother. It is going to be hard to get to in an HMO network. I have to jump through all the hoops with neurologist, rheumatologist, immunologist, etc. :confused: We are hoping that sooner or later one of us will get an answer.
    nikilotta7 43 Replies Flag this Response
  • Get the MRI of brain and spine. Lesions r the #1 diag. used for MS. Or get checked for Lupus. I have been in your boat for 7 years. I now have new doctors that jumped right in with all new test and r getting the job done. I'm hoping to get the tests done asap. Keeping my fingers crossed for my neurologist appt tomorrow. I will keep you all posted :-) Think happy thoughts. My main worry right now besides being drowsy all the time is the severe bone pain in both my tibias and forearms. It used to be just at night and now its 24/7.
    nikilotta7 43 Replies Flag this Response
  • I'm hoping to get the tests done asap. Keeping my fingers crossed for my neurologist appt tomorrow. I will keep you all posted :-) Think happy thoughts. My main worry right now besides being drowsy all the time is the severe bone pain in both my tibias and forearms. It used to be just at night and now its 24/7. Hi niki, how did ur appointment go with the neurologist ? ive got a blooming boil right inside my ear..............lol just my luck:rolleyes: got antibiotics for it 500mg 4 times a day..........yyyyyyuch lol:) but compared to trigeminal neuralaga pain its wee buns...lol :D
    Tootsie 628 Replies Flag this Response
  • Hi niki, how did ur appointment go with the neurologist ? ive got a blooming boil right inside my ear..............lol just my luck:rolleyes: got antibiotics for it 500mg 4 times a day..........yyyyyyuch lol:) but compared to trigeminal neuralaga pain its wee buns...lol :D Doesn't sound like fun though! Okay so update from my doctors visits today. Urologist: mmm kidney stones! that's what he believes. I'm going in for CT Urogram next week and a scope the following week. He also put me on something to help with the stones in the mean time. Neurologist: Put me on topomax and imitrex for daily migraines and headaches. Also put me on IB Profen therapy for the bone pain. He is sending me for tests with a neuro-opthamologist because he believes I have pseudotumor cebri. Sounds scary lol. So hopefully we will have some more conclusive answers after these tests.
    nikilotta7 43 Replies 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?

  • Doesn't sound like fun though! Okay so update from my doctors visits today. Urologist: mmm kidney stones! that's what he believes. I'm going in for CT Urogram next week and a scope the following week. He also put me on something to help with the stones in the mean time. Neurologist: Put me on topomax and imitrex for daily migraines and headaches. Also put me on IB Profen therapy for the bone pain. He is sending me for tests with a neuro-opthamologist because he believes I have pseudotumor cebri. Sounds scary lol. So hopefully we will have some more conclusive answers after these tests. Hmmmmmmmm does sound scary, but keep ur chin up.:)Have u ever been given imigran injections for ur headache ? they r great but can be expensive if u dont have national health. what part of the world are u in ? I was on imigran injections for a while but docs stopped me having them as i was going through 2 a day, 7 days a week for months they said i cud not keep going that way as that many cud lead to serious health probs & they where obvioulsy starting to fail me........lol i do know they where right i cudnt keep going that way:( the bone pain u mention is it ur actual bones or is it ur joints ? hope u get answers & i hope its not a scary as it sounds :)
    Tootsie 628 Replies Flag this Response
  • Hmmmmmmmm does sound scary, but keep ur chin up.:)Have u ever been given imigran injections for ur headache ? they r great but can be expensive if u dont have national health. what part of the world are u in ? I was on imigran injections for a while but docs stopped me having them as i was going through 2 a day, 7 days a week for months they said i cud not keep going that way as that many cud lead to serious health probs & they where obvioulsy starting to fail me........lol i do know they where right i cudnt keep going that way:( the bone pain u mention is it ur actual bones or is it ur joints ? hope u get answers & i hope its not a scary as it sounds :) My mother has injections she gives herself with migraines. I'm just happy to finally be back on meds for migraines. I'm in florida. Oh and my bone pain in actually through the center of my tibia (shin bone) and my arm bones. I've had it since I could remember. The doctors always told my parents it was growing pains but they never stopped and got worse over time.
    nikilotta7 43 Replies Flag this Response
  • Did the Neurologist do a romberg test with you? (umm I suppose he wouldnt have thought to do that). I would of liked to know if you tested positive to that. Many who have had lyme (or other serious illnesses) end up with chronic fatigue syndrome, some of your symptoms thou are not CFS ones eg urinating blood clots.. so obviously there is something else going on. Ones with CFS thou often have fibromyalgia along with bone pain... often legs more affected due to you use them more. I once urinated huge chunky, fleshy blood clots (along with peeing urine which was almost blood) after trying to suicide with drug overdose eg panadol and other drugs.. so im wondering if you are taking a lot of panadol.. or if other drugs you are on, could be causing that symptom????
    taniaaust1 2267 Replies Flag this Response
  • Did the Neurologist do a romberg test with you? (umm I suppose he wouldnt have thought to do that). I would of liked to know if you tested positive to that. Many who have had lyme (or other serious illnesses) end up with chronic fatigue syndrome, some of your symptoms thou are not CFS ones eg urinating blood clots.. so obviously there is something else going on. Ones with CFS thou often have fibromyalgia along with bone pain... often legs more affected due to you use them more. I once urinated huge chunky, fleshy blood clots (along with peeing urine which was almost blood) after trying to suicide with drug overdose eg panadol and other drugs.. so im wondering if you are taking a lot of panadol.. or if other drugs you are on, could be causing that symptom???? I haven't been on any medications until today besides ib profen, iron and potassium supplements, multivitamins. So no med caused problems. I have tested positive for epstein barr but besides that no other tests. The neurologist mostly dealt with the headaches and said he didnt have enough time to go through all of my problems today. grrr. I have to wait til eye tests and recheck in 6 weeks for that. What does the romberg test for? fibro? Thanks for the help!
    nikilotta7 43 Replies Flag this Response
  • If anyone is familar with either pseudotumor cebri or can fill me in on possible causes for pain in the middle of bones in my arms and legs, I would appreciate any information. I try searching for bone pain and all I get is joint pain etc. Thank you in advance for your help!
    nikilotta7 43 Replies Flag this Response
  • Okay so had eye exam yesterday for pseudotumor cebri. NEGATIVE! So now what? I'm up to about 5 headaches a day plus up to 2 migraines a day!!! By the time I get over one I get about an hour or two of reprieve before another hits and the simple act of bending over to pick up something or going to the bathroom (I know it sounds funny) can cause one. The wooshing noise in my head, mainly in left ear, and my left ear pain has gotten soooo much worse. I've been on Topomax for almost a month now (100 mg) to prevent headaches, 400mg motrin 3 x a day to treat headaches, and Imitrex 100 mg to treat migraines. I'm only allowed one dose of Imitrex a day so I have to save it for whatever migraine hits worse. Does this sound normal? I don't drink caffiene, soda, coffee, alcohol, don't smoke, rarely eat chocolate.. I make pretty good food choices. So I stay awake from headache / migraine triggers. Eyesight came back 20/20 yesterday. Left message for neuro yesterday and they are squeezing me in today so I don't have to wait for another month. Any insight would be helpful!
    nikilotta7 43 Replies Flag this Response
  • LOL you still have a sense of humor... when you have so many reasons to be depressed. Hang in there. I'll toss in a ... get screened for porphyria... my guess would be your drs have done this as you have many illnesses related to your immune and digestive system. But it is a possibility that you have genetic porphyria, or an acquired one given your various treatments. Do pursue seeing a geneticist.... at your age with all the problems you are having... you need to know if a genetic problem is triggering all the other systems to go haywire and what you can do to help calm down some of the problems and perhaps avoid more problems down the road. As sick as you have been; you seem to be quite a strong person and are dealing with things pretty well. Do be careful about medications, the NSAIDS can be ******n the GI tract. I'd try to avoid using drugs that are harder on your liver, as your liver is dealing with an awful ot with your illnesses. Also be wary of over-doctoring, and try not to use un-necessary medicines. Use only what you need. Avoid starvation/fasting/high protein low carb diets; avoid alcohol, try not to take too many medications, treat infections with drugs that are safest for you, avoid stress. Porphyria - WrongDiagnosis.com About Porphyria Porphyria is not a single disease but a group of at least eight disorders that differ considerably from each other.www.porphyriafoundation.com/about_por/index.html Porphyria information including symptoms, diagnosis, misdiagnosis, treatment, causes, patient stories, videos, forums, prevention, and prognosis.About Porphyria: TestingThere are many components to testing for porphyria. Get insight on porphyria testing here.www.porphyriafoundation.com/about_por/testing/index.htmlwww.wrongdiagnosis.com/p/porphyria/intro.htm http://www.porphyriafoundation.com/about_por/drugs/index.htmlOn medications and drugs.... the drug database to find drugs that are perhaps the safest ones for you.tdwi ;) I was waiting for that lol.
    TaylorDeelwithit 382 Replies Flag this Response
  • Hope they are being careful about all these drugs you are taking. I am worried. :( Iron could worsen a porphyria disease if you have it and they aren't careful in monitoring you. I am worried that you could be at risk of being over-doctored and over-medicated.:( I also am worried the nuerologist may not be fully listening to you. :( Can you go to a medical school and get seen by metabolic diseases (genetic) department of some sort???? tdwi88888888888888888888888888888888888 I haven't been on any medications until today besides ib profen, iron and potassium supplements, multivitamins. (THIS IS A LOT OF MEDICINES, SOME OF WHICH CAN HURT YOUR GUT badly LIKE IBUPROFEN) So no med caused problems. DON'T BE SO SURE . You are on IRON and IBUPROFEN even... yikes. I have tested positive for epstein barr but besides that no other tests. The neurologist mostly dealt with the headaches and said he didnt have enough time to go through all of my problems today. DR SPEAK FOR HE AIN"T GOING TO LISTEN TO YOU MORE... He has checked you off imo as another female with multiple complaints grrr. I have to wait til eye tests and recheck in 6 weeks for that. What does the romberg test for? fibro? Thanks for the help!
    TaylorDeelwithit 382 Replies Flag this Response
  • I was waiting for that lol. Niki read the thread "Not Medical related" give u a laugh !:)
    Tootsie 628 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.