Struggling to get a diagnosis

[JAM2b]

I have had ongoing physical symptoms for years and have gone to different doctors who repeat the same tests over and over and find nothing wrong. I'm usually told that the cause is stress. The number of symptoms and severity and frequency of them has increased over the years. I used to think it was unrelated problems, but now I think it is all connected.

For the last year and a half I have been seen in a different clinic by a Dr who has been willing to look into other diagnosises and has made referrals to specialists. Still nothing has been found. She is saying that it is likely stress now, but I know that not every condition has been explored and more could be done to look into things.

When I go to the Dr now, I'm very tense, nervous and defensive. My emotions are so strong I have a hard time holding it together and communicating.

Work is difficult because I have some bad days. I explain to my co-workers and supervisors, and they believe me. However they try to figure what's wrong, tell me how to fix it, and make judgements about how I'm dealing with things.

I'm very tired of struggling through this phase of not knowing and not being able to do anything about it. It has gone on for almost 20 years and is worse now than ever.

 

[sahjimira]

Just asking cause u probably have, but have u ever been treated for stress? Did any of this Dr's ever suggest anything? I know my uncle( yrs ago) had a hard time getting any Dr to believe he had appendicitis. Finally he had it removed and never had more trouble. I imagine you've heard it all before but was wondering if u looked into checking out stress or if ur doc recommended anyone

 

[JAM2b]

It makes sense to ask that.

I've been given medications for anxiety and depression and had counseling and stress management a lot.

The thing is, now my life is less stressful than ever, but the symptoms are worse than ever.

 

[LaSorcia]

You don't say anything about what your symptoms are. Have you ever had a food allergy skin prick test?

 

[JAM2b]

I've never been checked for allergies.

My symptoms are so broad I never thought they were connected before but because it is all worse, I believe that is now.

The symptoms are:
tiredness, both sleepiness and physical exhaustion

Mental fog

Muscle weakness, spasms, tension, cramps in all areas of my body

Numbness or tingling in my arms, legs, feet, hands, face, lips, and tongue

Tremor or muscle shakiness that cause leg wobble, inability to maintain balance without conscious effort and clumsiness with my hands and fingers which causes messy work, spills, cuts and burns

Sometimes when I walk one of my legs won't move, or won't move fully. I struggle regain/maintain balance.

Heat and cold sensations when there should not be

Bladder issues

Intestinal and bowel issues. I'm usually constipated and it usually ends with diarrhea then goes back to constipation

My food does not fully digest. It often passes through in a state that is still identifiable.

A new thing is sudden nausea and puking. I will be fine, then have to vomit, and be fine again in a matter of minutes.

Another relatively new thing is eye floaters, blurriness, and eyeball pain. I have also developed difficulty driving at night because of halos and difficulty determining depth and distance at night.

 

[JAM2b]

A tricky thing about this is that the symptoms aren't constant, except for the stomach and eye issues. The rest of them all come and go, sometimes they are worse than others. And they don't all occur at the same time or in the same combination each time.

I had began keeping a notebook daily for every symptom and foods, and how I slept, trying to have something concrete to show the doctors. But I became obsessed and bogged down with it, so I stopped. It was making me crazy and paranoid about it.

The current Dr has found a vitamin D deficiency that has remained low in spite of adding supplements. I also have anemia on occasion but it is always resolved with taking Iron.

 

[LaSorcia]

I am no doctor, but I think docs trying to pass it off as stress is a lazy response. They do a CBC and if that's fine, they blame the patient too often.

I asked about food allergies because I had undiagnosed ones for decades, with many of the symptoms you described. I had no idea why I could feel so horrid one day and fine the next. Please ask for a food allergy test. It might come up negative, but it's worth a shot! Praying for you!

 

[Krissy Cakes]

I'm praying for you.

Praying the doctors WILL listen to you and help you.

 

[JAM2b]

I want to say thanks for the prayers, suggestions, and concern all of you shared.

I'm going to try getting in to see a medical eye doctor for diagnosis on the eyes if I can squeeze it into my budget this month.

It will be late winter or spring before I can get anything else done, mostly because if money issues. I've applied for medical assistance and have not heard back yet. I have health insurance but the co-pays and deductible are more than I can afford right now. With each new year there is a 1500.00 deductible, and specialist copay is higher than pcp copay.

So I will continue to try floating through until I can either afford to push for more diagnostic work or receive assistance for it.

 

[Angeleyes7715]

I've never been checked for allergies.

My symptoms are so broad I never thought they were connected before but because it is all worse, I believe that is now.

The symptoms are:
tiredness, both sleepiness and physical exhaustion

Mental fog

Muscle weakness, spasms, tension, cramps in all areas of my body

Numbness or tingling in my arms, legs, feet, hands, face, lips, and tongue

Tremor or muscle shakiness that cause leg wobble, inability to maintain balance without conscious effort and clumsiness with my hands and fingers which causes messy work, spills, cuts and burns

Sometimes when I walk one of my legs won't move, or won't move fully. I struggle regain/maintain balance.

Heat and cold sensations when there should not be

Bladder issues

Intestinal and bowel issues. I'm usually constipated and it usually ends with diarrhea then goes back to constipation

My food does not fully digest. It often passes through in a state that is still identifiable.

A new thing is sudden nausea and puking. I will be fine, then have to vomit, and be fine again in a matter of minutes.

Another relatively new thing is eye floaters, blurriness, and eyeball pain. I have also developed difficulty driving at night because of halos and difficulty determining depth and distance at night.

Have you tried colonics and getting on a parasite cleanse? I've been through the same broad symptoms. One of my issues was parasites.

 

[JAM2b]

I'm reluctant to try anything without a diagnosis. Or Dr recommendation.

I did see a natural path, but she gave an etreme diet, enzymes, and high dose liquid vitamins without even knowing what was wrong. I haven't followed her advice.

 

[Angeleyes7715]

I'm reluctant to try anything without a diagnosis. Or Dr recommendation.

I did see a natural path, but she gave an etreme diet, enzymes, and high dose liquid vitamins without even knowing what was wrong. I haven't followed her advice.

All I can say is I've been there and still don't have a diagnosis. I had to keep searching for myself, but I hear ya. Getting advice when you don't know what's wrong is scary and expensive.

 

[zippy2]

You really have to be your own advocate these days. They are sure not going to volunteer anything. Mostly just toss meds at it and hope for the best.

 

[Angeleyes7715]

Very very true. I had my arm swelling up and streaking and all kinds of symptoms and they didn't ever find out what was causing it nor did they care.

 

[zippy2]

Very very true. I had my arm swelling up and streaking and all kinds of symptoms and they didn't ever find out what was causing it nor did they care.

And man, when we get 'of a certain age' they just really really don't care most of the time. Unless you have a good doctor then you are lucky.

 

[LaSorcia]

You really have to be your own advocate these days. They are sure not going to volunteer anything. Mostly just toss meds at it and hope for the best.

Unless it's pain meds, then too bad for you!

 

[LaSorcia]

And man, when we get 'of a certain age' they just really really don't care most of the time. Unless you have a good doctor then you are lucky.

Lucky? It's so rare in my experience, that I think that qualifies as a bona fide miracle!

 

[katerinah1947]

I have had ongoing physical symptoms for years and have gone to different doctors who repeat the same tests over and over and find nothing wrong. I'm usually told that the cause is stress. The number of symptoms and severity and frequency of them has increased over the years. I used to think it was unrelated problems, but now I think it is all connected.

For the last year and a half I have been seen in a different clinic by a Dr who has been willing to look into other diagnosises and has made referrals to specialists. Still nothing has been found. She is saying that it is likely stress now, but I know that not every condition has been explored and more could be done to look into things.

When I go to the Dr now, I'm very tense, nervous and defensive. My emotions are so strong I have a hard time holding it together and communicating.

Work is difficult because I have some bad days. I explain to my co-workers and supervisors, and they believe me. However they try to figure what's wrong, tell me how to fix it, and make judgements about how I'm dealing with things.

I'm very tired of struggling through this phase of not knowing and not being able to do anything about it. It has gone on for almost 20 years and is worse now than ever.

Hi,

It's not you dear. Doctors now are mostly incompetents for rare conditions. It used to take 12 to 14 years for a rare condition to be diagnosed.

Mine took longer. And I ended up doing the work myself from books.

My migraines were actually food allergies in the stomach and sphincter muscle between them from house allergens.

I finally became depressed, and that was caused by a yeast allergy. I cleared that up with a medicine and have never had those symptoms again. However, that medicine is a known heart clogger, and yes I was nailed by that a few years later, shocking everyone, especially me.

Also, and hopefully you do not have this I had a battle fatigue incident which keeps me cold always and is not correctable.

Yet, the Idiopathic Hypersomnia took the longest for anyone to diagnose and you guessed it, I did that one also, plus it is confirmed by the U.S. Government, but is rare.

LOVE,

 

[Joyful Mama]

JAM2b, have they investigated multiple sclerosis?

Will be thinking of you and praying, it's so frustrating when you know the physical symptoms are real but you have no answers.

 

[JAM2b]

Thanks everyone for encouragement and tips.

Multiple Sclerosis is being looked into now, but the diagnosis is tricky and other things have to be ruled out first. I can't afford deductible or specialist copay right now so most things are in hold while until I can pay with the exception of seeing an eye Dr in February. I have had to stop driving at night completely because of the halos from headlights and street light. They physically hurt my eyeballs and I can see nothing else but circles of light.

It's really hard to deal with people at work and in my personal life who aren't patient, think the solution should be simple and expect me to continue on as if I'm fine when I'm not. I don't know how to cope with the emotional aspect of it.