Frustrated...any advice?

sandtigress

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I've been sick for something around three months now. Chills, shaking, dizzy spells and vertigo, nausea, profuse sweating, tremors in my hands, and tachycardia.

The doctors can't figure out whats wrong with me - I've been tested for lupus, other autoimmune diseases, hypothyroidism, Lyme disease, adrenal gland tumors, MS, brain tumors, etc. It took me a lot of effort just to try and get them to test me for anything at all!

The only test I've had come back abnormal is a test of my vestibular (balance) system which revealed a lesion on one side in my vestibular nerve, which might explain the vertigo, but we have no reason for the damage. They tried to treat me for Meniere's, and gave me steroid shots in my ears. I was on diuretics for that for awhile, but they had to take me off because my blood pressure was falling too low, so now I'm just on a low-salt diet for the Meniere's, and finished the course of steroid shots.

My symptoms are coming back now though - I'm getting sweating spells again, and flashes of vertigo and just feeling plain awful. Now my chest is starting to ache and my ribs hurt (not a heart-type pain). I've felt like I'm going to come down with a cold for the past week, without actually getting any cold symptoms other than the aching chest.

I was supposed to see a dizziness specialist on Friday which I was really looking forward to, hoping he'd come up with something, but my appointment has just been pushed back another week, to October 2!

Now I'm left feeling awful, afraid it's going to get worse, and not sure if I should maybe make an appointment with my general practitioner (who I havent actually seen for any of this) or just sit it out and wait until next Friday and hope things dont get so bad that I have to start missing work again.

What do you guys think? Call and make an appointment or tough it out until next week? I don't want to just be going to doctors all the time, but I'm tired of feeling sick too, and I just want someone to tell me what's wrong with me!
 

ldg

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Oh Pam!


Do you mean move the appointment with the specialist up? Is that possible? Or do you mean go see your GP?

How involved has your GP been in this whole process? Supportive or not? Is there anything he/she has been able to do that actually helps the symptoms?

If you're talking about the GP - I guess I'd have to say a lot depends upon the answers to those questions. Gary has a number of health issues - no one has figured out quite a few of the problems. His GP is peripherally involved because he's useless. So when he starts exhibiting strange symptoms - there's no point in going to the GP, because there is no diagnosis and no medicine to be prescribed. At least not by him.

If, for some reason, you need the symptoms documented - go!

Bummer the dizziness specialist appointment got pushed out to begin with.


 
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sandtigress

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Thanks Laurie.


I can't move the specialist appointment up - he comes in from Austin, so he's only here occasionaly anyways, and my appointment got moved back because of a family emergency of some time.

I haven't actually seen my GP - it's a little convoluted. I see two specialists for other things (high platelets and allergies) so if I already have an appointment coming up with one of them, it just doesn't make sense to me to book another appointment and another co-pay with my GP if I can run things by a doctor I'm already seeing, since usually its just a "This is nothing to worry about, right?" kind of question.

This has led me on a bit of a goose-chase though, that I'm wondering if my GP can't figure out. Though since a cardiologist, ENT, hematologist/oncologist, and neurologist haven't figured it out, I'm not sure what my GP can do for me. At the same time though, since his medicine is more "generalized" maybe he'll think of something a specialist didn't?

The idea of having to wait almost two weeks for just the possibility of answers just drives me nuts. I'm afraid of how bad I'll feel by that time, since the vertigo is coming back now, and I already feel lousy...
 

fwan

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working in a medical clinic i have come to the conclusion doctors suck!


i have been to three specialists, have had 5 xrays done plus ultrasounds on my arm and nobody can explain to me why it is sore, they have ruled out carpel tunnel, and i have no damage in my hand but yet i have sharp pains from just above my elbow down to my ring finger and to my little finger, my wrist hurts like crazy when it is cold.

a colleague of mine had severe back pains, she went and saw some sort of herbal person and he literally gave her a massage and she turned up to work looking like he had beaten her up, in the first session he pinched her arm and said,your stomach has problems. Now she is so healthy and swears by them.

go to your gp, and ask for his opinion, just by reading your symptoms i thought it was pregnancy!
 

snake_lady

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Ok, this is way out in left field but....

any mention of panic disorder?

Chills, shaking, dizzy spells and vertigo, nausea, profuse sweating, tremors in my hands, and tachycardia
all the above were symptoms I had prior to my diagnosis and medicating of severe panic disorder.

I just thought I would throw it out there as a suggestion.
 
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sandtigress

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Originally Posted by fwan

i have been to three specialists, have had 5 xrays done plus ultrasounds on my arm and nobody can explain to me why it is sore, they have ruled out carpel tunnel, and i have no damage in my hand but yet i have sharp pains from just above my elbow down to my ring finger and to my little finger, my wrist hurts like crazy when it is cold.
I get something like that - they had no better name for it so they just labeled it "tendonitis". Sleeping with a stiff wrist brace on helps mine a lot.

go to your gp, and ask for his opinion, just by reading your symptoms i thought it was pregnancy!
Haha yeah. Its a pretty logical conclusion, except that I haven't done certain things that you need to do in order to get pregnant.
Not unless we're expecting another virgin birth, but I haven't heard from any angels yet!
 
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sandtigress

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Originally Posted by Snake_Lady

Ok, this is way out in left field but....

any mention of panic disorder?



all the above were symptoms I had prior to my diagnosis and medicating of severe panic disorder.

I just thought I would throw it out there as a suggestion.
I have no mental symptoms though - cool as a cucumber up there, just frustrated and annoyed that they can't figure out what's wrong with me.

I had one doctor try to put me on anxioltyics/antidepressants but I actually got depressed on those - made things worse, not better, and that's actually when the tremors started up really bad. They were very fine before then - I could only see them under my microscope. Now, you can't miss them if I try to hold my hands still.
 

ldg

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So what Dr. were you thinking you should see?

You know - because it IS so convoluted - maybe ask around and find a good GP if you don't like yours. ...and if you do? Maybe it is time to go - and either have all the records sent there, or bring the files with you.
You never know - maybe another set of eyes on it will help "pull it all together" so to speak? Ya never know.

But I TOTALLY understand how frustrating it's gonna be to have to wait two weeks to see the next specialist!

 
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sandtigress

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Laurie, I'm wondering if I should see my GP, since I haven't yet. All I've seen so far are various specialists.

Maybe what I'll do is try to hang in there until I see the dizziness specialist, then see if he has anything for me, and see my GP after that if he doesn't. I just feel like such a hypochondriac going from doctor to doctor, even if I do think something is really wrong with me.
 

strange_wings

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Originally Posted by Sandtigress

Not unless we're expecting another virgin birth, but I haven't heard from any angels yet!


Besides, how could a panic disorder cause a lesion on the vestibular nerve?

The lyme tests done were western blot, correct? ELISA tends to be the ones they want to do because the CDC only accepts and recommends them.


I'm stumped.
Your symptoms don't sound that different than in those some who have an infectious cause - epstein barr, lyme, etc. Even some people that get the CFS label have symptoms like yours...

You may have to look into going to some sort of clinic (like Mayo) or finding a doctor who will test for everything and be willing to retest if no answers are found, something is being missed here. We can only hope it's not going to cause more lesions or damage elsewhere.

You weren't exposed to any sort of chemicals, were you?
 
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sandtigress

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Originally Posted by strange_wings

I'm stumped.
Your symptoms don't sound that different than in those some who have an infectious cause - epstein barr, lyme, etc. Even some people that get the CFS label have symptoms like yours...
My friends were joking about me needing to see a Dr. House, and were listing all the "usual suspects" - most of which I've already been cleared for. MS, lupus, Lyme. They mentioned sarcoidosis, which fits my symptoms, though a lot of the systemic disorders give the same symptoms.

Its one I haven't been tested for though.
I'm considering mentioning it.

You may have to look into going to some sort of clinic (like Mayo) or finding a doctor who will test for everything and be willing to retest if no answers are found, something is being missed here. We can only hope it's not going to cause more lesions or damage elsewhere.
I have a friend who really wants me to go to Mayo - she's in Minnesota and my friend with a brain tumor lives pretty close to there. I'd love for a doctor to send me up, but without a referral, I just don't see how its feasible right now. Though if I get to go to school at the University of Minnesota like I want...I think I'd be there!

You weren't exposed to any sort of chemicals, were you?
I'm a grad student who works in a research lab, but there's nothing in here that I know of that would cause my symptoms that everyone else hasn't been exposed to as well. And nothing horrendously dangerous - most of its pretty safe, and if its not, we use protective gear.
 

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Been tested for Lyme, Rocky Mountain Spotted Fever, West Nile Disease, Equine Encephalitis or other insect borne diseases?? They all can have neurological symptoms and long lasting and sometimes permanent effects. FWIW, my balance has been for poopoo since I had WNV but it isn't consistant - comes and goes.
 

strange_wings

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Originally Posted by Sandtigress

I have a friend who really wants me to go to Mayo - she's in Minnesota and my friend with a brain tumor lives pretty close to there. I'd love for a doctor to send me up, but without a referral, I just don't see how its feasible right now. Though if I get to go to school at the University of Minnesota like I want...I think I'd be there!
It would be nice if you could get a chance to go, especially a chance to see your one friend.
At least you know if you had to go soon you'd have friends to stay with. From everyone I've talked with, depending on how you go through Mayo,they check you in and pass you around.

You might as well mention it and other things. You're not getting any better so you have nothing to lose (other than blood
).

The reason why I asked about chemicals is because some people's immune systems go haywire when exposed to certain things that other people are unaffected by.
Heavy metals and parasites tested for? - including toxoplasmosis?
 
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sandtigress

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Originally Posted by sk_pacer

Been tested for Lyme, Rocky Mountain Spotted Fever, West Nile Disease, Equine Encephalitis or other insect borne diseases?? They all can have neurological symptoms and long lasting and sometimes permanent effects. FWIW, my balance has been for poopoo since I had WNV but it isn't consistant - comes and goes.
Lyme, yes, but nothing else. I'm having a hard time getting the doctors to take me seriously - even though over two months of dizziness, clear nausea with gag reflex, and a heart rate of 100+ up to 160 bpm isn't normal at all.



Originally Posted by strange_wings

It would be nice if you could get a chance to go, especially a chance to see your one friend.
At least you know if you had to go soon you'd have friends to stay with. From everyone I've talked with, depending on how you go through Mayo,they check you in and pass you around.

You might as well mention it and other things. You're not getting any better so you have nothing to lose (other than blood
).

The reason why I asked about chemicals is because some people's immune systems go haywire when exposed to certain things that other people are unaffected by.
Heavy metals and parasites tested for? - including toxoplasmosis?
I haven't been exposed to anything new though - I've been working in this lab with the same chemicals for almost five years. The symptoms that I know of only started this year.

Other symptoms I've had - like my high platelets and occasional shortness of breath - have been around for longer than I've been in the lab.

Strange, huh?
 

calico2222

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Originally Posted by Sandtigress

Lyme, yes, but nothing else. I'm having a hard time getting the doctors to take me seriously - even though over two months of dizziness, clear nausea with gag reflex, and a heart rate of 100+ up to 160 bpm isn't normal at all.





I haven't been exposed to anything new though - I've been working in this lab with the same chemicals for almost five years. The symptoms that I know of only started this year.

Other symptoms I've had - like my high platelets and occasional shortness of breath - have been around for longer than I've been in the lab.

Strange, huh?
From what I understand (and someone correct me if I'm wrong) but the body basically reguvinates itself every 7 years. So what may not have bothered you 5 years ago, may bother you now, or festered for a while before making symptoms known.

I would suggest going back to you GP. Even if he can't do anything, he can at least point you in the right direction. Did you have a copy of all your tests sent to him/her? I do that regardless of if I make an appointment without a referral. I found out after trying to get my mom's health records that it is MUCH easier to have one doctor have them all. Just for future reference.

I'm guessing you've already seen an ear/throat specialist since you got shots in your ear.

I hate going to doctor after doctor. I did that this past year, and it was a major pain! In every orifice you could imagine imagine....literally. Finally found out my main problem is my thyriod, but you alread said you had that test. Was it a nuclear test or just a scan? I'm not trying to say that is what's wrong....but they didn't find out about mine until I went to an endo doctor and she ordered the thyroid nuclear test. The thyroid was fine, but wasn't producing enough because it wasn't getting enough hormones from the other gland (endocrine?) so now I'm on kelp pills to give me more iodine and I feel SO much better! It's even helped settle my stomach because I was constantly nausus and throwing up every morning, dizzy, etc, but this is helping me. I have to go back for another nuclear scan in 2 weeks....if you haven't done it, maybe you should check into it.

that you feel better soon!
 
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sandtigress

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Hope, they just tested my thyroid levels with a blood test.

I do need to have all my tests sent to my GP. My hematologist has them all right now - he kind of acts like my GP cause I see him fairly often.


I'm still torn as to whether I should see my GP soon, or wait until after seeing this specialist. I have no idea if this specialist can help me or not - or if my GP can help me or not. Its just so frustrating to not have doctors not listen to me!
 
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sandtigress

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So what do you guys think? Am I jumping the gun by trying an appointment with my GP, or is it a sensible thing to do?


In the (very) unlikely event that its something like sarcoidosis, then heart involvement is pretty serious and maybe I should have that looked at as soon as possible. But knowing me, its really unlikely that I do have something like that, in which case, maybe going in is just me being a hypochondriac.

Plus, if I have something more systemic, then maybe the specialist won't have any ideas since he specializes in dizziness and might miss something where dizziness just happens to be a symptom and is not the main problem. Argh! Help!
 

ldg

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You are not a hypochondriac. There is something wrong - and unlike some other people - you actually have tests that DO indicate there are physical problems - it's not "just" that you don't "feel" right.

I say go to the GP. Get this person involved in the process. Tell him/her you wanted to bring them up to date - and you want their advice on what to do next. And in the meantime, this is how you're feeling right now. As someone used to taking a look at the "whole" person and not just segments, maybe they can see something one of the specialists hasn't.

 

strange_wings

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You know, it really depends on your GP - and how that doctor is as a person. Generally they don't have the training to handle complex things, some hate it when they can't figure out what's wrong and will blame the patient. Actually all sorts of doctors do this.

My GP couldn't handle what you'd be bringing to him. He'd be lost.
He doesn't really get my health issues and they're only odd, not that complex. However he's willing to refer to other docs or if anything is too weird he goes with his gut and has stuck me in the hospital. The last time he did that it turned out to be the right choice.
 

ldg

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I was getting the feeling from Pam that she really would like to go but the only thing stopping her is that she's afraid she's being a hypochondriac.

Pam - if I'm right and that is the issue, then do go.
 
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