Discussions By Condition: I cannot get a diagnosis.

host of symptoms, but no diagnosis yet.

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: lintek
  • June 21, 2009
  • 01:09 PM

this is the most frustrating forum. Knowing you're sick but not knowing yet what exactly it is.
I"m on the cusp of finding out, but need to find a doctor who will know how to do more extensive testing.
I am seeing mainly my rheumy doctor and gave up on my primary doctor. he only referred me anyway.

It all started about six years ago. hands and arms went numb and tingly in the night. fingers, hands and arms up to the elbows would go numb if layed on my tummy above my belly button region. some nights if I fell asleep with my arm above my head on the pillow, I'd wake up screaming that I had all loss of touch and feeling as if I had a stroke. I'd have to flop the bad arm with the good arm down on the bed till the circulation worked again.
I don't do that anymore in my sleep.
then I started getting horrible aches and pains and exhaustion from doing the most simplest of tasks. like working out in the yard, or cleaning the house, or what ever.... forget about making big dinners for the family, I'd be wiped out for 3 days afterwards. I have four children and they expected the holiday gatherings.
this went on for about a year before I told my dr about it. because I thought it would go away. It proggressivly got worst!
it is now six years later and I have multiple other things going on that does NOT go away.
ANA test was performed but came out negative. rheumatoid arhtritis was considered, but that came out negative. I was told the lymes test was neg. too.
I was dx'd first with degenerative joint disease( osteoarthritis) in spine and neck with spurs and so on. then dx'd with osteoporosis of spine and hips. then diagnosed with a vitamin D deficiency, was given a script of high dosage of vit. D. it went back up but came back down again and now i"m on the script again.
Now I have swelling of different joints that jump from body part to body part within the past year. there is nothing to account for it because nothing is showing up on the xray that was ordered. you can see with the eye the joint swelled up and stayed swollen but at least the crippling pain went away in them. have in joint of base of thumb in left hand, then it jumped to right hand on the pointer finger joint at base of finger. not the finger's it self.
then it attacked my right knee, that went away and then into my left hip, had an MRI, showing signs of osteoarthritis, then now jumped over to the right hip and outer side of the right thigh and into groin.
so severe that I could not find a comfortable position. dr. had me do an MRI without contrast and it's only showing minimal fluid in it.
for the pain I'm feeling and I'm unable to walk nice and fluid anymore, I'd think something more would've shown up on teh MRI. it just doen'st make sense.
I have numbness and tingling on my scalp as if it's bruised and someone tugged on my pony tail. it's on the crown and scattered also. when I rub my hand over the scalp, it feels like little shards of glass are stuck in my follicles. it's the strangest thing. I can't lay on my husbands chest at night becasue my scalp goes literally numb.
I can't tolerate heat anymore. especially heat from water in the shower because I wind up ripping my flesh open from the hot water itching my skin. so now I take tepid showers. forget if the sun touches my skin.
it sets me off into an itching frenzy.
the itching mainly is on my outer arms, the upper thighs, and top of my back on the spine. oh, and on the base of my neck on my scalp.
it DRIVES me insane!
My mind is detoriating as well. which is a common feature in menopausal woman. this is not your basic brain fog. I'm talking about twisting all my letters around, forgetting how to spell common grade school words, short term memory loss, forgetting which tap is hot or cold, the ignition in my car, the wiper blades from the high lights, etc.
forget about carrying on a conversation with people anymore. I forget what I'm saying mid sentence. the word calling, etc.
the numbness is now in another area that I can not speak of openly because it's a tender subject and tender area that ladies do NOT speak of.
My right hand is tremoring badly when I try to bring the cigarette to my mouth. (I know, smoking is bad)
oh, the numbness too when I burnt the inside of my lower arm with the tip of the iron was weird too. it only felt like a very light touch and was shocked to see the actual damage that it did for weeks afterwards. the blistering and 2nd degree burn. I thought it only touched it lightly. I was wrong.
My feet, actually the toes go into cramps when I bend my feet. forget about tight sheets or heavy blankets when I sleep at night. anything to not have the toes pointing.
I was having severe pains in my abdomen that sent me to the ER twice and I was dx'd with having IBS, with chronic constipation.
oh and malabsorption syndrome a few years ago which I was put on enzymes for. they tested the stool to see if there was fat in it.
I'm have NO appetited and have to force feed myself. nothing looks worst than a bony long neck of a 48 yr old woman. I'm 5'7 and weight 110 pounds. I keep losing. everyone is telling me to eat, eat eat.
easier said than done.
so it seems that many things are going on and my rheumy dr is only doing the basic testing.
i dont' know what type of doctor to go to to evaluate the symptoms I'm having.
it could be multiple things with so many different areas of my body that are declinging.
back in 2000, when a gynocologist did a laparoscopy on me to evaluate an ovarian cyst, he noticed my liver was pock marked and scarred. he said I had the beginning of chirrosis and asked me if I drank alot?
I did when I was younger, but not lately I told him.
I had the basic liver function test that came out normal though.
years later another dr told me my liver looked normal and that hte liver can heal itself.
I'm also getting more and more of these red dots on my upper body, mostly my arms, neck, chest, and even face. they're called "spider angioma's" and are usually seen on people who are either pregnant because of hormones, or on people with liver disease.
also, I can smell only certain scents, and my hearing is going.
I feel I am in the body of a 90 yr old. not a 48 yr old.

Does anyone here who is reading this post have any idea what could be wrong with me? do you think it's symptoms of MS, or LUPUS or some other type of autoimmune problem?
I feel it is.
I have a gut instinct it is and I dont' know what dr to go to or what other testing to do by my rheumy dr.

all I know is that I"m suffering on a daily basis and my life is being wasted away. I lost my jobs due to many days of always calling in sick or leaving early.
this has been going on for a couple years now with no concrete answer.

its' confusing and I should've been keeping a journal of some sort of when these things occured and what the symptoms are. I can recall most of them, but I"m sure i missed a few that might be able to put the picture together.

I dont' want anyone to feel I"m whining and complaining. I just want to get a true diagnosis instead of all this guessing and being told I shoudl go for physical therapy and to take all these different type of medications that don't work.

it's the most frustrating thing I've had to deal with and it's not fun to have to feel like your dr thinks you're a hypochodriac.
I"m embarrassed actually.
I just want my life back again.
boy will I never take my health for granted ever again if I ever get it back.

I will take any suggestions or thoughts.

thank you.


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1 Replies:

  • I feel for you so much. I cannot help because I have almost all those symptoms except a few and replace those with some I've experienced like vision loss etc. And the sad part is I immediately thought ms when it was all ruled out. Unfortunately for me being 21 they won't even refer me to anyone. Im ready to go high than them and rip them to pieces because it can't be right to deny me tests or referals I don't believe. As for you, a rhemotologist is what my mom was going to for some things but have you tried a spinal tap ? Another doctor I know who couldn't obviously help me, he wasn't in my group but he suggested that because it could be a problem with the nervous system and not necessarily a life threatening one. My mom had nerve issues for years and unfortunately found out she had trigeminal neuralgia which doesn't have a cure but at least she knows now. Cause I feel its even more aggravating that everyone acts like you're fine and some hypochondriac when you're not ! Anyways, best of luck to you, Im even going on to med school next year so noone else has to be told "you're fine" when they're not, at least not if they're my patient.. God bless.
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