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Cytomegalovirus caused autoimmune problems?
Hey there,
In 1994 I contracted acute Cytomegalovirus that was misdiagnosed as Mono and I was sent home with encephalitis that left me screaming in pain for ten days. I have never had such unbearable pressure and pain inside my head. Ever since this I have been experiencing worsening immune issues. A very nasty bout of Guttah Psoriasis treated with methotrexate, ongoing strep throat, swollen glands and allergies. I just learnt to live with them as I worked ridiculously long hours and had no time for illness.
Fast forward to the present time and I have been very unwell since March 2013. Fatigue that is so extreme, BP that falls as low as 70/35 and causes me to pass out, recurring pancreatitis, headaches, permanent swollen glands in throat and axilla, itchy skin that rashes up at will, and a beautiful Mediterranean sun tan without the holiday. Nausea when eating, loss of hearing in one ear and blurry vision also add to the pot pourri of symptoms. I have had every specialty look at specific areas except Endocrinologist and Rheumatologist. ANA negative, Ca 19.9 = 6 and holster monitor just showed rare ventrical and atrial ectopics. Going for a thyroid U/S on Friday and Endo appt' early July. What are your thoughts? I can't function some days due to brain fog and finding the situation very debilitating.
Any advice welcome,
Debra.
In 1994 I contracted acute Cytomegalovirus that was misdiagnosed as Mono and I was sent home with encephalitis that left me screaming in pain for ten days. I have never had such unbearable pressure and pain inside my head. Ever since this I have been experiencing worsening immune issues. A very nasty bout of Guttah Psoriasis treated with methotrexate, ongoing strep throat, swollen glands and allergies. I just learnt to live with them as I worked ridiculously long hours and had no time for illness.
Fast forward to the present time and I have been very unwell since March 2013. Fatigue that is so extreme, BP that falls as low as 70/35 and causes me to pass out, recurring pancreatitis, headaches, permanent swollen glands in throat and axilla, itchy skin that rashes up at will, and a beautiful Mediterranean sun tan without the holiday. Nausea when eating, loss of hearing in one ear and blurry vision also add to the pot pourri of symptoms. I have had every specialty look at specific areas except Endocrinologist and Rheumatologist. ANA negative, Ca 19.9 = 6 and holster monitor just showed rare ventrical and atrial ectopics. Going for a thyroid U/S on Friday and Endo appt' early July. What are your thoughts? I can't function some days due to brain fog and finding the situation very debilitating.
Any advice welcome,
Debra.
My tumor was found in 1992, but I was sick long before that. I got treated in 2004. So it took 12+ years to get an answer.
I traveled everywhere. Have tumor, will travel.
Next time you feel wonky, try salt. Go get salt tablets and carry them. Ask someone else to tell you to take them. I do the same thing. When I get *low*, I forget everything, including to take meds. Not the best time.
Surprised the electrolytes test did not show anything.
I traveled everywhere. Have tumor, will travel.
Next time you feel wonky, try salt. Go get salt tablets and carry them. Ask someone else to tell you to take them. I do the same thing. When I get *low*, I forget everything, including to take meds. Not the best time.
Surprised the electrolytes test did not show anything.
Hey Rumpled,
The more we talk and the more I read I am blown away with how ridiculous it is that so many of us have similar symptoms with no medical practitioner willing to admit it is what it is. I have now come to the realisation that it is better to just keep it bottled up and protect myself from the ridicule and innuendo of people that don't understand what you go through. I have the most caring partner in the world, but even he seems to be sick of me being sick. Imagine how I feel in this body!!!
How did you come to get your diagnosis and how long did it take to get it?
My last trip to the a Emergency Dept. Was one of the worst. I work in a gaol and literally became that disorientated and brain fogged that I had no idea what I was doing. When my partner got me to the hospital I was almost unconscious and couldn't speak properly. Well, to cut a long story short, I was given three soluble aspirin for a "migraine" and sent home!! I spent the next 4 days in a daze and don't remember much of it. Some migraine???
So much for my theory of presenting with extreme symptoms and then they will believe.....WRONG!!
Oh well, I'll just keep pushing through and hope for someone to notice.
Take care,
Debra.
The more we talk and the more I read I am blown away with how ridiculous it is that so many of us have similar symptoms with no medical practitioner willing to admit it is what it is. I have now come to the realisation that it is better to just keep it bottled up and protect myself from the ridicule and innuendo of people that don't understand what you go through. I have the most caring partner in the world, but even he seems to be sick of me being sick. Imagine how I feel in this body!!!
How did you come to get your diagnosis and how long did it take to get it?
My last trip to the a Emergency Dept. Was one of the worst. I work in a gaol and literally became that disorientated and brain fogged that I had no idea what I was doing. When my partner got me to the hospital I was almost unconscious and couldn't speak properly. Well, to cut a long story short, I was given three soluble aspirin for a "migraine" and sent home!! I spent the next 4 days in a daze and don't remember much of it. Some migraine???
So much for my theory of presenting with extreme symptoms and then they will believe.....WRONG!!
Oh well, I'll just keep pushing through and hope for someone to notice.
Take care,
Debra.
Heard the horse comment. Many of us with Cushing's make it a point to wear zebra something to doc appointments for that reason.
Have you seen a cardiologist? I see one - many of us do - the weird issues with sodium and potassium (you may or may not have) but the low BP should get evaluated. I have had so many stress tests - ugh.
Nausea is a symptom of low cortisol, among other things. So if that has not been tested, or the doc has not picked up on the fact that you are chowing down on loads of sodium to stay at the bottom of the range... I take loads myself and that is where I land. I take florinef (fludrocortisone) to retain sodium and keep a normalize BP, which the other day was 100/60.
I love coffee too and I can drink a ton and fall right asleep.
The docs have to work the more common to the less common, but they should at least evaluate you correctly.
Have you seen a cardiologist? I see one - many of us do - the weird issues with sodium and potassium (you may or may not have) but the low BP should get evaluated. I have had so many stress tests - ugh.
Nausea is a symptom of low cortisol, among other things. So if that has not been tested, or the doc has not picked up on the fact that you are chowing down on loads of sodium to stay at the bottom of the range... I take loads myself and that is where I land. I take florinef (fludrocortisone) to retain sodium and keep a normalize BP, which the other day was 100/60.
I love coffee too and I can drink a ton and fall right asleep.
The docs have to work the more common to the less common, but they should at least evaluate you correctly.
D as in Vit D?? Yep, and it's low always. Have to take supplements to keep it in "normal" range.
Yes I do crave salt and also coffee??? Which, by the way, I use to stop myself from passing out. I figure it works because the caffeine shrinks blood vessels which makes heart beat harder and in turn raises my BP.
Had my thyroid U/S today and the technician said it looked quite ok! My glands are still egg size but obvious autoimmune symptom.
My tan is getting darker by the day. Nausea is driving me crackers. Not losing weight though. Very strange bunch of symptoms I admit but I am fed up to the back teeth with feeling like an idiot when nothing shows in tests.
I was told by a Dr once that they are told to look for "horses, not zebras" when it comes to tests. But for me, there are more zebras than horses! So what then?? Grrr.
Thank you Rumpled for taking the time to read and reply.
Regards,
Debra.
Yes I do crave salt and also coffee??? Which, by the way, I use to stop myself from passing out. I figure it works because the caffeine shrinks blood vessels which makes heart beat harder and in turn raises my BP.
Had my thyroid U/S today and the technician said it looked quite ok! My glands are still egg size but obvious autoimmune symptom.
My tan is getting darker by the day. Nausea is driving me crackers. Not losing weight though. Very strange bunch of symptoms I admit but I am fed up to the back teeth with feeling like an idiot when nothing shows in tests.
I was told by a Dr once that they are told to look for "horses, not zebras" when it comes to tests. But for me, there are more zebras than horses! So what then?? Grrr.
Thank you Rumpled for taking the time to read and reply.
Regards,
Debra.
In my case, my low BP is a renin/aldosterone issue but your potassium is ok, but your sodium is teetering on the low end. I don't have adrenal glands (removed to cure Cushing's) so all the 'lytes can get quite messed up. If those are healthy tests, then perhaps they can look at the renin/aldosterone loop?
I know my calcium is normal, but my PTH is in the tank - I only have one parathyroid left and it is gasping for life. Endos are really in the dark in PTH. Ever have a D done?
I used to have wonky inflammation markers - but never ANA. I was just mild with that.
BTW the sun tan points to elevated ACTH - which is AI with your adrenals at fault. I have the same tan. ACTH is a very botched test. It degrades in minutes in the tube - so if they don't use a chilled tube and spin right away, your results will be low due to poor handling.
Do you crave salt?
I know my calcium is normal, but my PTH is in the tank - I only have one parathyroid left and it is gasping for life. Endos are really in the dark in PTH. Ever have a D done?
I used to have wonky inflammation markers - but never ANA. I was just mild with that.
BTW the sun tan points to elevated ACTH - which is AI with your adrenals at fault. I have the same tan. ACTH is a very botched test. It degrades in minutes in the tube - so if they don't use a chilled tube and spin right away, your results will be low due to poor handling.
Do you crave salt?
Hi Rumpled,
Thanks for your reply. I get copies of every test done by my GP but whenever had some huge "episodes" I've gone to the hospital emergency dept. And they don't always give results. Most of my blood results sit just on the border of low or high. For example:-
Sodium 136, Range = (135-145)
Calcium 2.15' Range= (2.15-2.55)
Creatine 42, Range = (45-90)
Bicarbonate 21, Range = (22-32)
Potassium 4.4, Range = (3.2-5.0)
ALT 36, Range = (<30)
Albumin 34, Range =(35-50)
VitB12188, Range, =(135-650)
Iron 13.4, Range = (5.0-30.0)
TSH 1.13, Range = (0.40-3.50)
Coags done:-
PT 13seconds (11-18)
INR1.0f
APTT 25f seconds (24-38)
Abs Neutrophils 2.7 (2.0-8.0)
Lymphocytes 1.7 (1.0-4.0)
Monocytes 0.4 (0.2-1.0)
Eosinophils 0.2 (0.0-0.5)
Basophils 0.0 (0.0-0.1)
Fasting Glucose 4.8 (3.6-6.0)
Yes, my ANA test was only a simple testing for Lupus that just came back as negative??
I have my thyroid ultrasound tomorrow as my glands in throat have been swollen for around 3 weeks and it is a little difficult to swallow.
The goodness that came through today is my Endocrinologist appointment has been brought forward a month to next Wednesday the 11th June. Any advice on tests to ask for would be greatly appreciated.
Thank you so much for reading,
Regards
Debra.
Thanks for your reply. I get copies of every test done by my GP but whenever had some huge "episodes" I've gone to the hospital emergency dept. And they don't always give results. Most of my blood results sit just on the border of low or high. For example:-
Sodium 136, Range = (135-145)
Calcium 2.15' Range= (2.15-2.55)
Creatine 42, Range = (45-90)
Bicarbonate 21, Range = (22-32)
Potassium 4.4, Range = (3.2-5.0)
ALT 36, Range = (<30)
Albumin 34, Range =(35-50)
VitB12188, Range, =(135-650)
Iron 13.4, Range = (5.0-30.0)
TSH 1.13, Range = (0.40-3.50)
Coags done:-
PT 13seconds (11-18)
INR1.0f
APTT 25f seconds (24-38)
Abs Neutrophils 2.7 (2.0-8.0)
Lymphocytes 1.7 (1.0-4.0)
Monocytes 0.4 (0.2-1.0)
Eosinophils 0.2 (0.0-0.5)
Basophils 0.0 (0.0-0.1)
Fasting Glucose 4.8 (3.6-6.0)
Yes, my ANA test was only a simple testing for Lupus that just came back as negative??
I have my thyroid ultrasound tomorrow as my glands in throat have been swollen for around 3 weeks and it is a little difficult to swallow.
The goodness that came through today is my Endocrinologist appointment has been brought forward a month to next Wednesday the 11th June. Any advice on tests to ask for would be greatly appreciated.
Thank you so much for reading,
Regards
Debra.
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