Aa
Im begging someone to help me with this!
I really need help with this i am going out of my mind! ANY suggestions or help would be so welcome!
About 2 years ago now i started feeling like my breathing wasnt right. it felt too shallow like i couldnt take in enough air. Then i started getting very bad headakes every single day and dizziness all day every day too the point i couldnt do anything normal anymore because i was too scared. I went to my doctor and he was baffled and basically just wrote it off. Its been two years now and my health has got continuously worse. every day i experience these symptoms now..
Heart palpitations
'fluttering' in my chest.
Rapid heart beat whenever i move in the slightest.
Dizziness all day every day
Head pain
Pressure in my head like its filled up with something and about to explode
Pains/tingling & numbness in both legs and arms(it varies) And face.
Chest pain
Very out of breath even when just sitting still
And the most recent symtpoms are my ears feeling all blocked and a kind of wave of numbness + tingling (very bad feeling) feeling like its washing through my brain which makes me feel like i cant breath or think at all while it happens (normally lasts about 3-4 seconds) It kind of feels like my brain just cuts out.
I am nearly 18 years old, female, not preganant, a bit underweight.
I have had ALOT of blood tests, thyroid is normal, blood cells are normal, Bp normal, An echocardiogram came back fine, Wore a 7 day ecg monitor which showed my palpitations but the cardiologist said it was ok?? Had a brain MRI scan from the neurologist which he said was 'essentialy normal' Im being sent to a breathing clinic next month but other than this no one seems to know whats going on or how to help. im not sure they even want to!!
Sorry for such a long Question please any help would be SO appreciated!
Dawn
About 2 years ago now i started feeling like my breathing wasnt right. it felt too shallow like i couldnt take in enough air. Then i started getting very bad headakes every single day and dizziness all day every day too the point i couldnt do anything normal anymore because i was too scared. I went to my doctor and he was baffled and basically just wrote it off. Its been two years now and my health has got continuously worse. every day i experience these symptoms now..
Heart palpitations
'fluttering' in my chest.
Rapid heart beat whenever i move in the slightest.
Dizziness all day every day
Head pain
Pressure in my head like its filled up with something and about to explode
Pains/tingling & numbness in both legs and arms(it varies) And face.
Chest pain
Very out of breath even when just sitting still
And the most recent symtpoms are my ears feeling all blocked and a kind of wave of numbness + tingling (very bad feeling) feeling like its washing through my brain which makes me feel like i cant breath or think at all while it happens (normally lasts about 3-4 seconds) It kind of feels like my brain just cuts out.
I am nearly 18 years old, female, not preganant, a bit underweight.
I have had ALOT of blood tests, thyroid is normal, blood cells are normal, Bp normal, An echocardiogram came back fine, Wore a 7 day ecg monitor which showed my palpitations but the cardiologist said it was ok?? Had a brain MRI scan from the neurologist which he said was 'essentialy normal' Im being sent to a breathing clinic next month but other than this no one seems to know whats going on or how to help. im not sure they even want to!!
Sorry for such a long Question please any help would be SO appreciated!
Dawn
I don't mind at all, if there is any help or advice I can give please don't hesitate to ask. I am new and learning to and am fully aware how scary and frighteninig the unknown is. A confirmed diagnosis has a lot to be said for itself...at least then we know what we are dealing with!!
As suggested by SurgiMenopause a tilt table test would be good. If all hormone tests are normal this would give a diagnosis (or not) of POTS.
I had a tilt table at fazakerley Hospital, Liverpool - were I was a patient. I am unsure whether this is standard equipment in all our hospitals or whether you have to be refered to an establishment with one.
Keep me posted how you are getting on x
As suggested by SurgiMenopause a tilt table test would be good. If all hormone tests are normal this would give a diagnosis (or not) of POTS.
I had a tilt table at fazakerley Hospital, Liverpool - were I was a patient. I am unsure whether this is standard equipment in all our hospitals or whether you have to be refered to an establishment with one.
Keep me posted how you are getting on x
Heya,
Thankyou, i think im going to write to the hospital first for there results of my scans and things and then to the doctors i think.
If i need your help with anything would you mind if i messaged you?
Ive never done this before so hopefully ill do it right!
xx
Thankyou, i think im going to write to the hospital first for there results of my scans and things and then to the doctors i think.
If i need your help with anything would you mind if i messaged you?
Ive never done this before so hopefully ill do it right!
xx
Thankyou for all your suggestions.
I've only ever had one MRI which was in early april, since then my head pains and dizziness have got alot worse but i dont think the doctor will order another one, because firstly it has to be the neurologist that orders it and he only did that the first time because he thought it would stop me worrying (i think he thought it was all in my mind to be honest) and second i dont think my doctor would even refer me to the neurologist again now. So i really dont know what else i can do about it!
As for the chest x-ray, ive one ever had one which was about a year and a half ago at the emergency room, they said it showed back then that my left lung was slightly murred which could be an infection so they prescribed me anti biotics...then they wrote up on there reports that they didnt find anything at all in the x-ray!! (which made me look like i was lying when i told the nuerologist about it)
I've only ever had one MRI which was in early april, since then my head pains and dizziness have got alot worse but i dont think the doctor will order another one, because firstly it has to be the neurologist that orders it and he only did that the first time because he thought it would stop me worrying (i think he thought it was all in my mind to be honest) and second i dont think my doctor would even refer me to the neurologist again now. So i really dont know what else i can do about it!
As for the chest x-ray, ive one ever had one which was about a year and a half ago at the emergency room, they said it showed back then that my left lung was slightly murred which could be an infection so they prescribed me anti biotics...then they wrote up on there reports that they didnt find anything at all in the x-ray!! (which made me look like i was lying when i told the nuerologist about it)
Regarding your thyroid- did they test just TSH, or did they test T3, T4, and calcitonin as well? If they are willing to do another blood test for the thyroid, I recommend try especially to get T3 checked in addition to TSH. You've had an issue with your appetite lately, etc., and they really should check those out.
Complete endocrine testing of all pituitary hormones that might have something to do with your symptoms would be nice to make sure none of those hormones are out of wack that might indicate a pituitary MRI is in order.
Don't forget catecholamines and definitely plasma free metanephrines regarding your heart rate! They should be trying to rule out a pheochromocytoma, particularly if you've had any episodes of high blood pressure. Also, if you have the hyperadrenergic form of POTS, your standing norepinephrine level could be revealingly high. Did you get the tilt table test ordered yet? This test can be conducted by an electrophysiologist.
Blood iron, ferritin (iron stores) and T.I.B.C. (total iron binding capacity) should be checked, not just CBC for the menstruating female, as you can have low iron and still have your CBC be in normal limits. This was the case with me prior to my hysterectomy.
If you had hyponatremia, which is low salt in the blood, it said signs and symptoms can be: headache, difficulty concentrating, memory impairment, confusion, weakness, and unsteadiness which may lead to falls.
I wonder if they tested your sodium level in your blood (it would be done with an electrolyte panel). Also, have they done a 24 urine sodium test?
If you want to get tested for fibromyalgia, you probably would get the best help from a rheumatologist knowledgable about it. They test "trigger points" to see if you have it.
When was the last brain CAT scan or MRI you had done? Do you have any new symptoms the doctor would think would warrant getting another scan?
When was the last time they did a simple chest x-ray to make sure there are no lesions or other problems that can show up on one that may indicate a cause of any of your lung symptoms?
What type of tachycardia did the holter monitor show? (ie sinus,supraventricular?)
Complete endocrine testing of all pituitary hormones that might have something to do with your symptoms would be nice to make sure none of those hormones are out of wack that might indicate a pituitary MRI is in order.
Don't forget catecholamines and definitely plasma free metanephrines regarding your heart rate! They should be trying to rule out a pheochromocytoma, particularly if you've had any episodes of high blood pressure. Also, if you have the hyperadrenergic form of POTS, your standing norepinephrine level could be revealingly high. Did you get the tilt table test ordered yet? This test can be conducted by an electrophysiologist.
Blood iron, ferritin (iron stores) and T.I.B.C. (total iron binding capacity) should be checked, not just CBC for the menstruating female, as you can have low iron and still have your CBC be in normal limits. This was the case with me prior to my hysterectomy.
If you had hyponatremia, which is low salt in the blood, it said signs and symptoms can be: headache, difficulty concentrating, memory impairment, confusion, weakness, and unsteadiness which may lead to falls.
I wonder if they tested your sodium level in your blood (it would be done with an electrolyte panel). Also, have they done a 24 urine sodium test?
If you want to get tested for fibromyalgia, you probably would get the best help from a rheumatologist knowledgable about it. They test "trigger points" to see if you have it.
When was the last brain CAT scan or MRI you had done? Do you have any new symptoms the doctor would think would warrant getting another scan?
When was the last time they did a simple chest x-ray to make sure there are no lesions or other problems that can show up on one that may indicate a cause of any of your lung symptoms?
What type of tachycardia did the holter monitor show? (ie sinus,supraventricular?)
hiya,
I wrote a letter to the hospital that has been treating me and addressed it to the Manager of the Medical Records Department. I stated that I wanted all tests, along with results, that have been done on me from the date I needed them from. In my case I am not really interested on the notes that have been written just the test results. In short I want the facts not speculation. I recieved a telephone call about a week later and the lady was lovely. I just explained how unwell I was and that I wanted to see what had been tested for. She then rang me a couple of days later and said 'Eve you have 2 big files...are u sure!!' So now she is, in her words, 'going to put it together like a story for me'!!
Then I recieved an application form to fill in my details. You have to get someone to sign this to to verify that you are who you say you are (I had a call this morning to inform me that I hadn't done this!!!! so it's being sent back out to me). After they recieve this they have to get signatures from the consultants/drs who treated you and then they will ask for payment and your copy will follow in the post. You can also ask to visually view the originals if you did not want to have them copied for you.
I decided to do this after 7 weeks in hospital with no official diagnosis and a glance at my creatinine results that were twice the highest normal level. This was indicative of 3/4 end stage chronic kidney disease!! They did come back down but I did not even know they were raised in the first place.
You can also request copies of your notes and results from your GP by writing to them and asking to see their records, they may have carried out different tests than drs at the hospital.
Let me know how you get on, goodluck x
I wrote a letter to the hospital that has been treating me and addressed it to the Manager of the Medical Records Department. I stated that I wanted all tests, along with results, that have been done on me from the date I needed them from. In my case I am not really interested on the notes that have been written just the test results. In short I want the facts not speculation. I recieved a telephone call about a week later and the lady was lovely. I just explained how unwell I was and that I wanted to see what had been tested for. She then rang me a couple of days later and said 'Eve you have 2 big files...are u sure!!' So now she is, in her words, 'going to put it together like a story for me'!!
Then I recieved an application form to fill in my details. You have to get someone to sign this to to verify that you are who you say you are (I had a call this morning to inform me that I hadn't done this!!!! so it's being sent back out to me). After they recieve this they have to get signatures from the consultants/drs who treated you and then they will ask for payment and your copy will follow in the post. You can also ask to visually view the originals if you did not want to have them copied for you.
I decided to do this after 7 weeks in hospital with no official diagnosis and a glance at my creatinine results that were twice the highest normal level. This was indicative of 3/4 end stage chronic kidney disease!! They did come back down but I did not even know they were raised in the first place.
You can also request copies of your notes and results from your GP by writing to them and asking to see their records, they may have carried out different tests than drs at the hospital.
Let me know how you get on, goodluck x
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