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Old 03-30-2019, 11:16 PM   #1
Illnessdoesntwin
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Exclamation No one knows (need to vent a little bit)

For a year now I have been diagnosed as being chronically ill but no body can find out what is wrong. I'm tired of having to see many different doctors in order to be able to cope with all the symptoms from dizziness to being incapable of doing anything. I wish someone could find out what is wrong with me so that I can have a name for whatever is trying to kill me that way I can call it by name. I just want to live a normal life without the worry of if something is going to kill me or not. I just want to live with no restrictions.
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Old 04-02-2019, 07:12 PM   #2
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Smile Re: No one knows (need to vent a little bit)

I hope that, in some way, you will be able to figure out what's going on.
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Old 04-06-2019, 02:55 PM   #3
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Default Re: No one knows (need to vent a little bit)

I'm sorry you're going through that and hope it can be finally diagnosed soon.

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Old 04-07-2019, 02:34 AM   #4
sarahsweets
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Default Re: No one knows (need to vent a little bit)

Hey I am not trying to play armchair doc but do you mind sharing more about what has gone on and what kind of docs you have seen? Reason I ask because I went through a three year ordeal and only recently has it seemed to settle down with some answers.
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Old 04-10-2019, 11:31 PM   #5
Illnessdoesntwin
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Default Re: No one knows (need to vent a little bit)

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Originally Posted by sarahsweets View Post
Hey I am not trying to play armchair doc but do you mind sharing more about what has gone on and what kind of docs you have seen? Reason I ask because I went through a three year ordeal and only recently has it seemed to settle down with some answers.
I have seen many eye doctors but I can't get into a rheumatologist to do a 100% full test for another 3-4 months because their waiting list is just so long
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Old 05-12-2019, 11:38 AM   #6
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Default Re: No one knows (need to vent a little bit)

Hi Ill ,

This sounds like a delayed onset of POTS that usually presents in children , but can present at any age. As with most autoimmune diseases , there is truly on definitive cure , however your symptoms can be in a state of remission with the proper care. A- Wiki _ link :

Postural orthostatic tachycardia syndrome - Wikipedia

Take care , good luck

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Old 07-26-2019, 03:51 AM   #7
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Default Re: No one knows (need to vent a little bit)

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Originally Posted by Illnessdoesntwin View Post
I have seen many eye doctors but I can't get into a rheumatologist to do a 100% full test for another 3-4 months because their waiting list is just so long
I understand that frustration. I've been going through similar things.
When I finally did go in to see my rheumatologist, they took a whole lot of blood that gave me 2 pages of blood tests and then shrugged after only finding that I had elevated CRPs (sign of inflammation somewhere in my body), insufficiency in Vitamin D (all the jokes were had at my house after), and elevated ANR (indicator that I may have an autoimmune disease/disorder). Then he told me that I could come back in 6 months (probably for more of the same tests). I was not about to wait 6 months while I haven't been able to work since April 10th (it was May 22nd).

I looked at the list of symptoms and started looking up online "what doctor do I see for this issue?" and started asking for referrals or asking if I can go straight to those specialists. I'm still in the process of illuminating the whole picture of my physical health/ailments, but I'm much closer because I was the politely squeaky wheel who did a lot of my own research to figure out who to go to.

Tell them *all* of your symptoms, and *all* of the supplements/meds you're taking. Always be honest because the answers you give can highly affect the outcome. If it really hurts, say it really hurts. I had several doctors tell me "have you considered maybe you're under a lot of stress and that's why you're experiencing these symptoms?"

I replied with, "I've dealt with abusive parents in my childhood, depression and anxiety for a majority of my adult life, I know what mental fatigue and crippling anxiety feels like. This is much different. I don't feel a lack of will or hope, I feel ready to get stuff done and figure out what's wrong with my body. I just physically can't lift things that are too heavy or run for any given amount of time because I physically feel *exhausted* (along with shakiness, dizziness, nausea, numbness and tingling in my extremities, and later on bloody stools and abdominal pain, etc)."

Do not let them tell you it is all in your head. Ask for tests. If they don't give them to you, say "oh, okay. You are the expert. Could you please put it in my chart that you recommend it isn't necessary to test me for that?" It isn't necessarily a threat, it is important for other doctors to know what has already been considered if you seek out a second opinion. Though doctors tend to see it as a threat because... well if they were wrong and it was on record that they were wrong a denied you a test that you had a suspicion about... that is *all* on them, but it's *your* life and their career on the line. Why take the risk?

That request to put their statement on record is the most magical, powerful phrase you can ever adopt as a medical patient, just double check if those things (tests and what have you) are covered by your insurance if you have it. If not, you'll want to look into your options for insurance. There's always something.

As of 2 days ago, I already know I have proctitis, but now I'm trying to make sure the cause is confirmed so that it's treated properly and I'm going to see a neurologist in August. The specialist I saw assumed it was ulcerative and not infectious, but I have no shame. I want to be tested JUST IN CASE, because I believe the worst thing is to treat for the wrong ailment, and let the infection spread when it's a simple swab/blood test that'll take less than a week to come back.

Had I listened to that rheumatologist (the one who said come back in 6 months), I'd be at home waiting, and *maybe* going to see the same specialist in NOVEMBER and then eventually potentially seeing another specialist, then discovering I have colitis (the entire colon, instead of just the end portion) or colon cancer instead of just proctitis.
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Old 08-04-2019, 08:55 AM   #8
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Default Re: No one knows (need to vent a little bit)

Quote:
Originally Posted by Keyplayer View Post
Hi Ill ,

This sounds like a delayed onset of POTS that usually presents in children , but can present at any age. As with most autoimmune diseases , there is truly on definitive cure , however your symptoms can be in a state of remission with the proper care. A- Wiki _ link :

Postural orthostatic tachycardia syndrome - Wikipedia

Take care , good luck

Keyplayer
I was thinking along these lines too. It wasn't until I was in my 40s that I finally found out that what I called my "mysterious exotic disease" -- that no one else believed in -- has a name. Mitral Valve Prolapse Syndrome Dysautonomia. Even now, more than 20 years later, there is only one Dysautonomia clinic in my region -- not my city, not my state, the whole region. Sigh.
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