allaloneJade
Member
- Joined
- Jun 21, 2014
- Messages
- 12
- Reason
- Undiagnosed
- Diagnosis
- 00/0000
- Country
- US
- State
- MS
It seems as if so many conditions are so closely related it is hard to determine which one or combinations one may have.
Several years ago I went to my doctor and I told him I was tired all the time, he gave me some stimulants and told me it would restart my system and that I needed to change professions. I left feeling defeated. Over the years I have always mentioned being constantly tired when I go to the doctors and it seems to be brushed to the side.
A year ago we made a decision for me to take some time off and hope that with a month or two of rest that I would feel refreshed and get back on track.... Like I said that was a year ago, and I am still at home, not working and seem to deteriorate by the day in my opinion even though I push to keep myself as active as my body and mind will allow.
I have two affirmative diagnosis that I am being treated for, the first is PTSD, the secondary is ADD. I go to weekly therapy sessions and have finally after many tries, found a combination of medications that work for me without making me feel worse and without making me so null and void that I detach from reality. So I am good on that spectrum. BUT... there are these things that have been happening to me, they have been going on a long time, but I tried to be a trooper and hide it from my family because I did not want my husband or sons to worry about me, they are all entering important phases in their lives and they need my support, not them lending me support.
All that being said, last year I went to stop up into a truck and I fell, I to this day believe I blacked out. I hit the ground and when I came to my senses my back felt contracted in the lower regions. I went to my doctor and he did some xrays and tells me I need an MRI as he sees I have DDD in the C-Spine but sees nothing in the lumbar according to the xray. Because of the changes last year with insurance plans I struggled for months to get he approval for the MRI. That test was completed 3 months ago and the doctor told me there was nothing really wrong with my spine. My husband asked him to send me to a neurologist and he really did not want to do so, instead he sent a referral for a pain management clinic. The clinic never called me, so several phone calls later I had a referral for a neurologist and the wait began.
I went into the appointment knowing very well what the MRI showed, or rather the lack of it really showing anything at all, but I knew I had pain, and a lot of other symptoms that I will list further down in this message. So in my mind I am thinking that this person will actually listen to me and understand the pain is real and there is something going on with this body of mine. The appointment was a total bust! The female doctor I seen started by telling me the MRI did not find anything and she wanted to know just why I was there, I explained that I do understand that MRI shows nothing, but something is going on and it is real and I need help finding some answers. This is when things went out of control, the hospital system is on a linked computer system so they pull up your file on the computer and everything about you with that hospital system is there. She sees that I have PTSD and starts in on me about it, I explained that I have no obligation to disclose to her the nature of my PTSD, that was between me and those that treat me for PTSD, I was here to see her for the physical things going on with me. I went into a fight and flight mode and was escorted to the desk to pay for the visit and I left with no answers. I made my way to my car and I bawled like a baby. I had driven a hour one way to this appointment in hopes that someone would actually hear me and help me discover the answers I need as to why I am deteriorating.
At the start of the next week I was in my weekly therapy session and I explained the story in complete detail to my therapist. She asked me to sign some papers and she would work as a liaison. I also went home and filed a complaint about the doctor I had seen on the hospitals website. A couple of days later I get a letter from the neuro office that I was being sent for an EMG with nerve conduction.
When I went to the appointment for the EMG and nerve conduction the tech explained that the areas the orders were for were for my hands and arms. The results were I have carpal tunnel in my right hand and the doctor who reviewed the results in office said I have something going on in my C-Spine, but he does not have a DX order to test that area. Then they see the referring doctor who sent me there, and this is where things took another turn. Apparent a couple of days prior to my appointment for the test, the doctor who wanted to make my appointment all about my PTSD was let go from the practice. So what is happening now is the practice is waiting on an opening so I can see one of the other neuro's.
The next day I woke up deathly ill with a fever and my right lung weezing and feeling like it was full of fluid. I went to a nurse practitioner who is close to my house who gave me some antibiotic shots, and some scripts. Two days after the EMG testing, on a Saturday mind you my phone rings and it is a number I do not know, I answer and it is the Pain Management Clinic wanting to know if I still wanted to take the referral and come and see them. I took the referral, I figure what the heck, maybe I can get some answers there even though I am not a fan of what those places do.
So the problem with my chest infection continued to worsen even with the shots and the oral meds, I had given it a week and I felt worse so I returned to the nurse practitioner. She said something just is not right, she had done a regular panel on my blood the week before for the standard stuff, it all was ok other than my BP was high that day. So she ordered a CBC and a chest Xray. That was Friday and I should have results sometime the first of the week. In the meantime I am in limbo with that.
So as for the symptoms that I have going on with me, here is my list....
...almost constant headache, not much relief from that.
... bubbles that are just water filled appear behind my ears and on my fingers. It is not puss it just seems to be water.
... I have never had acne in my life, not even at puberty, but I have been getting pimples, the nasty kind filled with white puss or whatever it is, on my face.
... I am always tired, no matter how much rest I get or do not get.
... I have pain that moves from place to place. It is sometimes in the joints and sometimes in the muscles.
... Constant muscle spams. They move all over my body from place to place, and while not painful, they are quite annoying.
... I have chest pains, I have had my heart looked at even though pain is on wrong side, I had a EEG and a stress test, it showed nothing. But the pain is there and is on my right side to middle chest.
... My eyes jump and my vision pixilates, that's the best way I can explain that. It takes a while for things to come back into focus.
... My arms feel like they weigh a ton. I cannot use them but for a minute and have to rest them and then return to whatever I was doing.
... My stomach hurts often. It is not the kind of pain you get when you need to void, it is hard to explain.
... I have heartburn almost constantly. It rarely seems to end.
... Some days I cannot go outside, the sunlight makes me feel like needles are stabbing my eyes.
... I have lost most of the hair on the front of my head going 2-3 inches back towards the crown.
... My veins have become smaller and very hard to draw blood from or start a line in.
... Heat just kills me. Everyone tells me I keep the house too cold and they have to wear hoodies in the summer and cover up with a throw, but I will be in shorts and a T and still feel hot.
... I have cold sweats. Just out of nowhere I will start sweating and become drenched, I end up taking 3-4 showers a day to wash the sweat off.
... My hands are changing, I have not white in the nail beds, only light pink and the skin above the nails is smooth and red.
... I often get cold sores on my mouth, something that used to only happen to me when I had a high fever or a cold, maybe 1-2 times a year, this now happens almost monthly.
... Sleep pattern.. I can not establish one, I have tried to no avail. I often tend to feel better and more active in the late night hours, and often go to bed about the time the sun rises.
... Up until the past 2 years I had only 2 or 3 UTI's, I now have them every couple of months despite drinking 8-12 bottles of water a day as well as drinking juice, I also have a healthy diet by the way making sure I get plenty of greens and other fruits and vegetables I need, I do not eat meat often, maybe once a week and usually only certified organic angus beef grown locally.
... I have started noticing bruises on my body with no recollection of what could have caused them.
SO.... if you have made it this far in this post congrats! Sorry I wrote a book, but I am so discouraged and I need to get it of my chest. I am scared, I mean who wouldn't be with all these things going on?
Because of my PTSD my therapist encouraged me to apply for social security disability being I am not able to work. I really struggled with that, it took me 3 months to get up the courage to start the claim. Starting the claim meant that I was accepting defeat, but with all these things going on I just am not able to work. I feel like scum for even applying. I have worked all my adult life and paid my taxes, so I know I have paid into the system, but it still hurts my ego.
I Am hoping for answers soon as to what is going on inside this body of mine. I have the mind stuff under control, and now the body is crazy, and doctors see you have PTSD think your crazy.. its a never ending circle.
Several years ago I went to my doctor and I told him I was tired all the time, he gave me some stimulants and told me it would restart my system and that I needed to change professions. I left feeling defeated. Over the years I have always mentioned being constantly tired when I go to the doctors and it seems to be brushed to the side.
A year ago we made a decision for me to take some time off and hope that with a month or two of rest that I would feel refreshed and get back on track.... Like I said that was a year ago, and I am still at home, not working and seem to deteriorate by the day in my opinion even though I push to keep myself as active as my body and mind will allow.
I have two affirmative diagnosis that I am being treated for, the first is PTSD, the secondary is ADD. I go to weekly therapy sessions and have finally after many tries, found a combination of medications that work for me without making me feel worse and without making me so null and void that I detach from reality. So I am good on that spectrum. BUT... there are these things that have been happening to me, they have been going on a long time, but I tried to be a trooper and hide it from my family because I did not want my husband or sons to worry about me, they are all entering important phases in their lives and they need my support, not them lending me support.
All that being said, last year I went to stop up into a truck and I fell, I to this day believe I blacked out. I hit the ground and when I came to my senses my back felt contracted in the lower regions. I went to my doctor and he did some xrays and tells me I need an MRI as he sees I have DDD in the C-Spine but sees nothing in the lumbar according to the xray. Because of the changes last year with insurance plans I struggled for months to get he approval for the MRI. That test was completed 3 months ago and the doctor told me there was nothing really wrong with my spine. My husband asked him to send me to a neurologist and he really did not want to do so, instead he sent a referral for a pain management clinic. The clinic never called me, so several phone calls later I had a referral for a neurologist and the wait began.
I went into the appointment knowing very well what the MRI showed, or rather the lack of it really showing anything at all, but I knew I had pain, and a lot of other symptoms that I will list further down in this message. So in my mind I am thinking that this person will actually listen to me and understand the pain is real and there is something going on with this body of mine. The appointment was a total bust! The female doctor I seen started by telling me the MRI did not find anything and she wanted to know just why I was there, I explained that I do understand that MRI shows nothing, but something is going on and it is real and I need help finding some answers. This is when things went out of control, the hospital system is on a linked computer system so they pull up your file on the computer and everything about you with that hospital system is there. She sees that I have PTSD and starts in on me about it, I explained that I have no obligation to disclose to her the nature of my PTSD, that was between me and those that treat me for PTSD, I was here to see her for the physical things going on with me. I went into a fight and flight mode and was escorted to the desk to pay for the visit and I left with no answers. I made my way to my car and I bawled like a baby. I had driven a hour one way to this appointment in hopes that someone would actually hear me and help me discover the answers I need as to why I am deteriorating.
At the start of the next week I was in my weekly therapy session and I explained the story in complete detail to my therapist. She asked me to sign some papers and she would work as a liaison. I also went home and filed a complaint about the doctor I had seen on the hospitals website. A couple of days later I get a letter from the neuro office that I was being sent for an EMG with nerve conduction.
When I went to the appointment for the EMG and nerve conduction the tech explained that the areas the orders were for were for my hands and arms. The results were I have carpal tunnel in my right hand and the doctor who reviewed the results in office said I have something going on in my C-Spine, but he does not have a DX order to test that area. Then they see the referring doctor who sent me there, and this is where things took another turn. Apparent a couple of days prior to my appointment for the test, the doctor who wanted to make my appointment all about my PTSD was let go from the practice. So what is happening now is the practice is waiting on an opening so I can see one of the other neuro's.
The next day I woke up deathly ill with a fever and my right lung weezing and feeling like it was full of fluid. I went to a nurse practitioner who is close to my house who gave me some antibiotic shots, and some scripts. Two days after the EMG testing, on a Saturday mind you my phone rings and it is a number I do not know, I answer and it is the Pain Management Clinic wanting to know if I still wanted to take the referral and come and see them. I took the referral, I figure what the heck, maybe I can get some answers there even though I am not a fan of what those places do.
So the problem with my chest infection continued to worsen even with the shots and the oral meds, I had given it a week and I felt worse so I returned to the nurse practitioner. She said something just is not right, she had done a regular panel on my blood the week before for the standard stuff, it all was ok other than my BP was high that day. So she ordered a CBC and a chest Xray. That was Friday and I should have results sometime the first of the week. In the meantime I am in limbo with that.
So as for the symptoms that I have going on with me, here is my list....
...almost constant headache, not much relief from that.
... bubbles that are just water filled appear behind my ears and on my fingers. It is not puss it just seems to be water.
... I have never had acne in my life, not even at puberty, but I have been getting pimples, the nasty kind filled with white puss or whatever it is, on my face.
... I am always tired, no matter how much rest I get or do not get.
... I have pain that moves from place to place. It is sometimes in the joints and sometimes in the muscles.
... Constant muscle spams. They move all over my body from place to place, and while not painful, they are quite annoying.
... I have chest pains, I have had my heart looked at even though pain is on wrong side, I had a EEG and a stress test, it showed nothing. But the pain is there and is on my right side to middle chest.
... My eyes jump and my vision pixilates, that's the best way I can explain that. It takes a while for things to come back into focus.
... My arms feel like they weigh a ton. I cannot use them but for a minute and have to rest them and then return to whatever I was doing.
... My stomach hurts often. It is not the kind of pain you get when you need to void, it is hard to explain.
... I have heartburn almost constantly. It rarely seems to end.
... Some days I cannot go outside, the sunlight makes me feel like needles are stabbing my eyes.
... I have lost most of the hair on the front of my head going 2-3 inches back towards the crown.
... My veins have become smaller and very hard to draw blood from or start a line in.
... Heat just kills me. Everyone tells me I keep the house too cold and they have to wear hoodies in the summer and cover up with a throw, but I will be in shorts and a T and still feel hot.
... I have cold sweats. Just out of nowhere I will start sweating and become drenched, I end up taking 3-4 showers a day to wash the sweat off.
... My hands are changing, I have not white in the nail beds, only light pink and the skin above the nails is smooth and red.
... I often get cold sores on my mouth, something that used to only happen to me when I had a high fever or a cold, maybe 1-2 times a year, this now happens almost monthly.
... Sleep pattern.. I can not establish one, I have tried to no avail. I often tend to feel better and more active in the late night hours, and often go to bed about the time the sun rises.
... Up until the past 2 years I had only 2 or 3 UTI's, I now have them every couple of months despite drinking 8-12 bottles of water a day as well as drinking juice, I also have a healthy diet by the way making sure I get plenty of greens and other fruits and vegetables I need, I do not eat meat often, maybe once a week and usually only certified organic angus beef grown locally.
... I have started noticing bruises on my body with no recollection of what could have caused them.
SO.... if you have made it this far in this post congrats! Sorry I wrote a book, but I am so discouraged and I need to get it of my chest. I am scared, I mean who wouldn't be with all these things going on?
Because of my PTSD my therapist encouraged me to apply for social security disability being I am not able to work. I really struggled with that, it took me 3 months to get up the courage to start the claim. Starting the claim meant that I was accepting defeat, but with all these things going on I just am not able to work. I feel like scum for even applying. I have worked all my adult life and paid my taxes, so I know I have paid into the system, but it still hurts my ego.
I Am hoping for answers soon as to what is going on inside this body of mine. I have the mind stuff under control, and now the body is crazy, and doctors see you have PTSD think your crazy.. its a never ending circle.
just throwing out the first things that came to mind.)
