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I Am A 36yo Female. I've Recently Been Diagnosed With

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Posted on Tue, 16 Jun 2020
Question: I am a 36yo female. I've recently been diagnosed with hPOTS (after 20 years of symptoms). During this whole period, I have been exhausted. To the point of not enjoying life at all. I have children and have trouble caring for them. I have an M.A., and can barely work anymore. My doctor is baffled; he's done so much bloodwork and everything always comes back 'normal'. I do have a bunch of strange things going on, such as having had surgery to remove cervical ribs which were causing vTOS, as well as chronic kidney stones, etc. I always have inflammation on imaging tests (ie. inflamed liver on u/s, but blood tests come bakc normal, and all joints inflamed on bone scan). But nothing to explain this unrelenting fatigue. To make matters worse, I've just had what seemed like shingles, which then turned into viral meningitis. I was one week in the hospital (discharged one week ago). My CSF WBC count was about 350, but apparently all the bloodwork came back normal. They also didn't manage to identify with certainty what caused the meningitis (viral serum tests were inconclusive). I'd like to know what is wrong with me. I seem to always be getting sick. Doctor will have me seeing an immunologist soon, as there is often a strong correlation b/w hPOTS and autoimmune disorders. However, blood tests so far have been negative. I did get a value of 3 on the dsDNA test, but apparently that's considered negative? I also just obtained a serum iGa result of 75, which I know is borderline low. Would the results be affected by my current state (still fighting a virus?). Would they be higher than normal because of the virus? Or lower? Should I ask to redo the test again in a few weeks? Also, I'm now about 20 days into the meningitis recovery and although the migraine is gone, I still have a headache most of the time, and lots of dizziness. My temperature is still elevated. I went for a short walk with the kids this morning, and thought I would pass out when I came back. I am now feeling so weak and I can barely even move my arms. Is this all normal?
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Follow up: Dr. Drkaushal85 (0 minute later)
I am a 36yo female. I've recently been diagnosed with hPOTS (after 20 years of symptoms). During this whole period, I have been exhausted. To the point of not enjoying life at all. I have children and have trouble caring for them. I have an M.A., and can barely work anymore. My doctor is baffled; he's done so much bloodwork and everything always comes back 'normal'. I do have a bunch of strange things going on, such as having had surgery to remove cervical ribs which were causing vTOS, as well as chronic kidney stones, etc. I always have inflammation on imaging tests (ie. inflamed liver on u/s, but blood tests come bakc normal, and all joints inflamed on bone scan). But nothing to explain this unrelenting fatigue. To make matters worse, I've just had what seemed like shingles, which then turned into viral meningitis. I was one week in the hospital (discharged one week ago). My CSF WBC count was about 350, but apparently all the bloodwork came back normal. They also didn't manage to identify with certainty what caused the meningitis (viral serum tests were inconclusive). I'd like to know what is wrong with me. I seem to always be getting sick. Doctor will have me seeing an immunologist soon, as there is often a strong correlation b/w hPOTS and autoimmune disorders. However, blood tests so far have been negative. I did get a value of 3 on the dsDNA test, but apparently that's considered negative? I also just obtained a serum iGa result of 75, which I know is borderline low. Would the results be affected by my current state (still fighting a virus?). Would they be higher than normal because of the virus? Or lower? Should I ask to redo the test again in a few weeks? Also, I'm now about 20 days into the meningitis recovery and although the migraine is gone, I still have a headache most of the time, and lots of dizziness. My temperature is still elevated. I went for a short walk with the kids this morning, and thought I would pass out when I came back. I am now feeling so weak and I can barely even move my arms. Is this all normal?
doctor
Answered by Dr. Drkaushal85 (40 minutes later)
Brief Answer:
Yes, you should ask for repeat testing.

Detailed Answer:
Thanks for your question on 'Ask A Doctor' forum.
I can understand your concern.
I have gone through the reports you have attached.

It is good that you are recovering and your headache is over.
Yes, you should definitely get done to repeat blood tests. I think values will be higher if you go for a blood test now.

Can you measure the temperature?

No, your symptoms are not normal. Sometimes weakness may persist for a longer duration.
Are you taking any multivitamin tablets?

Please let me know the answers of the above-asked questions so that I can guide you better.

Wish you good health.
Thanks


Above answer was peer-reviewed by : Dr. Arnab Banerjee
doctor
doctor
Answered by Dr. Drkaushal85 (0 minute later)
Brief Answer:
Yes, you should ask for repeat testing.

Detailed Answer:
Thanks for your question on 'Ask A Doctor' forum.
I can understand your concern.
I have gone through the reports you have attached.

It is good that you are recovering and your headache is over.
Yes, you should definitely get done to repeat blood tests. I think values will be higher if you go for a blood test now.

Can you measure the temperature?

No, your symptoms are not normal. Sometimes weakness may persist for a longer duration.
Are you taking any multivitamin tablets?

Please let me know the answers of the above-asked questions so that I can guide you better.

Wish you good health.
Thanks


Above answer was peer-reviewed by : Dr. Arnab Banerjee
doctor
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Follow up: Dr. Drkaushal85 (1 hour later)
Hello,
Thank you for the reply.

I do have a thermometer at home. My temperature is about 37-37.2C which isn't a fever per say, but it elevated for me (my usual temp runs low... usually 36C). While in hospital at the 'height' of the meningitis it ranged between 37-37.8C. So it has gone down, but is still elevated for me.

I do indeed take multivitamins. Folate and B12 are at normal levels. I just received my ANA results, and it's negative. CBC is all normal as well. I just don't understand why I am so tired all the time. And my neck and head still hurt.

These blood tests were done yesterday, and results are coming in today. ANA is negative, but dsDNA is 3. CRP and serum electrophoresis values all normal as well. One of my questions I guess would be about the iGa value. Does the fact that I am currently/recently sick elevate the numbers; would they actually be lower if I wasn't sick? (ie. does the body produce more iGas while sick?). Trying to figure out if I have an immune deficiency? I know I am grasping at straws here, but I know something isn't right, and it's extremely frustrating to constantly get 'normal' test results back.

Another question is, is there a reason why my CSF WBC would be 350 with a viral meningitis? I saw an academic article stating that the average is about 90 for viral meningitis, which it's been assumed I had.

Thank you!
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Follow up: Dr. Drkaushal85 (0 minute later)
Hello,
Thank you for the reply.

I do have a thermometer at home. My temperature is about 37-37.2C which isn't a fever per say, but it elevated for me (my usual temp runs low... usually 36C). While in hospital at the 'height' of the meningitis it ranged between 37-37.8C. So it has gone down, but is still elevated for me.

I do indeed take multivitamins. Folate and B12 are at normal levels. I just received my ANA results, and it's negative. CBC is all normal as well. I just don't understand why I am so tired all the time. And my neck and head still hurt.

These blood tests were done yesterday, and results are coming in today. ANA is negative, but dsDNA is 3. CRP and serum electrophoresis values all normal as well. One of my questions I guess would be about the iGa value. Does the fact that I am currently/recently sick elevate the numbers; would they actually be lower if I wasn't sick? (ie. does the body produce more iGas while sick?). Trying to figure out if I have an immune deficiency? I know I am grasping at straws here, but I know something isn't right, and it's extremely frustrating to constantly get 'normal' test results back.

Another question is, is there a reason why my CSF WBC would be 350 with a viral meningitis? I saw an academic article stating that the average is about 90 for viral meningitis, which it's been assumed I had.

Thank you!
doctor
Answered by Dr. Drkaushal85 (9 hours later)
Brief Answer:
No need to worry for CSF report at this moment.

Detailed Answer:
Thanks for your follow up question on icliniq.
I can understand your concern.
In my opinion, you should not think about CSF reports at present.
It is treated now.
Honestly speaking, with all reports normal, we have only left with Psychiatrist consultation today find out anxiety or other psychological issue.
So if you agree and believe, you should definitely consult psychiatrist and discuss all these.
Hope I have solved your query. I will be happy to help you further. Wish you good health. Thanks.
Above answer was peer-reviewed by : Dr. Kampana
doctor
doctor
Answered by Dr. Drkaushal85 (0 minute later)
Brief Answer:
No need to worry for CSF report at this moment.

Detailed Answer:
Thanks for your follow up question on icliniq.
I can understand your concern.
In my opinion, you should not think about CSF reports at present.
It is treated now.
Honestly speaking, with all reports normal, we have only left with Psychiatrist consultation today find out anxiety or other psychological issue.
So if you agree and believe, you should definitely consult psychiatrist and discuss all these.
Hope I have solved your query. I will be happy to help you further. Wish you good health. Thanks.
Above answer was peer-reviewed by : Dr. Kampana
doctor
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Follow up: Dr. Drkaushal85 (5 hours later)
I've actually been seeing a psychologist for 20 years as doctors always dismissed my symptoms as being anxiety. After 20 years I finally got the diagnosis of hyperadrenergic pots. Turns out that was the cause of my pf my symptoms (and it wasnt all in my head like doctors had been telling me all along). It took 20 years for a doctor to finally get me to do this very specialized test. It was.similar with the meningitis. All tests at the er were negative and the doctor sent me home. Two days later he called me for an update and based on my response, asked me to come back for a lumbar puncture. He lightly said, upon looking at the fluodx that it looked really good and he would be very surprised if it came back positive. Well, it did. All I'm saying is things are never obvious with me for some reason.

There are so many other blood tests that haven't been done yet. The doctor at the hospital agreed that there must be a higher level disease/disorder trying everything together... I've had meningitis, sepsis, c diff, spinal degeneration, etc. This is not all due to a psychiatric issue.

My main question was whether my immune system might be low\sluggish. Iga levels were borderline low. Since I am currently fighting off meningitis, are these levels higher than my normal, or lower? (In other words, how does a viral infection affect iga levels... does it make them increase or decrease?).

My problem is not psychological. I want to live and love life. There are so many things I want to do.

default
Follow up: Dr. Drkaushal85 (0 minute later)
I've actually been seeing a psychologist for 20 years as doctors always dismissed my symptoms as being anxiety. After 20 years I finally got the diagnosis of hyperadrenergic pots. Turns out that was the cause of my pf my symptoms (and it wasnt all in my head like doctors had been telling me all along). It took 20 years for a doctor to finally get me to do this very specialized test. It was.similar with the meningitis. All tests at the er were negative and the doctor sent me home. Two days later he called me for an update and based on my response, asked me to come back for a lumbar puncture. He lightly said, upon looking at the fluodx that it looked really good and he would be very surprised if it came back positive. Well, it did. All I'm saying is things are never obvious with me for some reason.

There are so many other blood tests that haven't been done yet. The doctor at the hospital agreed that there must be a higher level disease/disorder trying everything together... I've had meningitis, sepsis, c diff, spinal degeneration, etc. This is not all due to a psychiatric issue.

My main question was whether my immune system might be low\sluggish. Iga levels were borderline low. Since I am currently fighting off meningitis, are these levels higher than my normal, or lower? (In other words, how does a viral infection affect iga levels... does it make them increase or decrease?).

My problem is not psychological. I want to live and love life. There are so many things I want to do.

doctor
Answered by Dr. Drkaushal85 (16 hours later)
Brief Answer:
Usually viral infection increases IgA level.

Detailed Answer:
Thanks for your follow up question on Ask a doctor forum.
I can understand your concern.
Actually any viral infection increases IgA levels.
And another fact is that stress and anxiety reduce your immunity by reducing immunoglobulins.
So for immunity point of view, I think you should definitely consult immunologist or hematologist.
Hope I have solved your query. If you are not having further queries then please close the conversation and rate my answer.
You can ask me directly on bit.ly/askdrkaushalbhavsar.
Wish you good health. Thanks.
Above answer was peer-reviewed by : Dr. Kampana
doctor
doctor
Answered by Dr. Drkaushal85 (0 minute later)
Brief Answer:
Usually viral infection increases IgA level.

Detailed Answer:
Thanks for your follow up question on Ask a doctor forum.
I can understand your concern.
Actually any viral infection increases IgA levels.
And another fact is that stress and anxiety reduce your immunity by reducing immunoglobulins.
So for immunity point of view, I think you should definitely consult immunologist or hematologist.
Hope I have solved your query. If you are not having further queries then please close the conversation and rate my answer.
You can ask me directly on bit.ly/askdrkaushalbhavsar.
Wish you good health. Thanks.
Note: For further information on diet changes to reduce allergy symptoms or to boost your immunity, Ask here.

Above answer was peer-reviewed by : Dr. Kampana
doctor
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Dr. Drkaushal85

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Practicing since :2008

Answered : 15005 Questions

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I Am A 36yo Female. I've Recently Been Diagnosed With

I am a 36yo female. I've recently been diagnosed with hPOTS (after 20 years of symptoms). During this whole period, I have been exhausted. To the point of not enjoying life at all. I have children and have trouble caring for them. I have an M.A., and can barely work anymore. My doctor is baffled; he's done so much bloodwork and everything always comes back 'normal'. I do have a bunch of strange things going on, such as having had surgery to remove cervical ribs which were causing vTOS, as well as chronic kidney stones, etc. I always have inflammation on imaging tests (ie. inflamed liver on u/s, but blood tests come bakc normal, and all joints inflamed on bone scan). But nothing to explain this unrelenting fatigue. To make matters worse, I've just had what seemed like shingles, which then turned into viral meningitis. I was one week in the hospital (discharged one week ago). My CSF WBC count was about 350, but apparently all the bloodwork came back normal. They also didn't manage to identify with certainty what caused the meningitis (viral serum tests were inconclusive). I'd like to know what is wrong with me. I seem to always be getting sick. Doctor will have me seeing an immunologist soon, as there is often a strong correlation b/w hPOTS and autoimmune disorders. However, blood tests so far have been negative. I did get a value of 3 on the dsDNA test, but apparently that's considered negative? I also just obtained a serum iGa result of 75, which I know is borderline low. Would the results be affected by my current state (still fighting a virus?). Would they be higher than normal because of the virus? Or lower? Should I ask to redo the test again in a few weeks? Also, I'm now about 20 days into the meningitis recovery and although the migraine is gone, I still have a headache most of the time, and lots of dizziness. My temperature is still elevated. I went for a short walk with the kids this morning, and thought I would pass out when I came back. I am now feeling so weak and I can barely even move my arms. Is this all normal?