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

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Posted on Wed, 17 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?
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!
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. Sudhir Kumar (32 minutes later)
Brief Answer:
Good clinical recovery after meningitis takes a few weeks to months

Detailed Answer:
Hi,

Thank you for posting your query.

I am Dr Sudhir Kumar, Neurologist, and would try my best to help you.

I have noted your clinical details and I can understand your distress, not only because of the illnesses but also because of doctors' inability to accurately identify the root cause of these.

Regarding viral meningitis, I agree that CSF cell counts are below 100 in most cases, however, I have seen patients with counts of 500 on a number of occasions. They have been young and with good immunity. So, viral meningitis can occur in people with good immunity ( about 90% of my patients were young and with good immunity).

IgA levels in blood usually would not get affected with viral meningitis. However, it is always good to test them at least two weeks after any infection.

Symptoms of viral meningitis such as headache, fatigue, malaise, weakness, etc takes time to completely resolve. Many of my patients take 4-6 weeks to feel good; some may take even longer.

Therefore, at the moment, it is difficult to label you as one with poor immunity, however, a review consultation with an immunologist may help to sort out. On a different note, even if immune deficiency is confirmed, there is no specific treatment you can take to prevent infections in future (other than general precautions and care).

I agree you do not have a primary psychological disease. However, having suffered from so many medical problems, it is possible that you have medical-illness associated depression/anxiety.

I sincerely hope my reply has helped you.
     
I would be pleased to answer, if you have any follow up queries or if you require any further information.
     
Best wishes,     
Dr Sudhir Kumar MD (Internal Medicine), DM (Neurology) XXXXXXX Consultant Neurologist
Apollo Hospitals, XXXXXXX
For DIRECT QUERY to me: http://bit.ly/Dr-Sudhir-kumar
My blog: http://bestneurodoctor.blogspot.com/


Above answer was peer-reviewed by : Dr. Vaishalee Punj
doctor
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Follow up: Dr. Sudhir Kumar (10 hours later)
Thank you so much for the thorough response. I really appreciate it.
I realize that my case is extremely complicated... There is a strong correlation between hPOTS and other disorders including autoimmune and connective tissue... I have symptoms of both... I am actually going to be having an apt' with an immunologist in a few weeks, and am really hoping she will be very thorough and do more than a few basic tests. Over the years, I have learned to trust my instincts about my health. Too many times I have been told it was 'nothing' or 'all in my head', only to find out later on that I had been right all along. So that is why I am now pushing for a diagnosis for immune, autoimmune, or connective tissue disorder. I am absolutely certain it is one of the three. The reason I had sent my query in the first place was just to get some further thoughts on it. So thank you : )

doctor
Answered by Dr. Sudhir Kumar (32 minutes later)
Brief Answer:
I hope you get correctly diagnosed.

Detailed Answer:
Thank you for getting back.

I hope your immunologist comes to the root cause and correctly identifies the diagnosis. Please keep me informed.

Best wishes,

Dr Sudhir Kumar MD DM
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
Answered by
Dr.
Dr. Sudhir Kumar

Neurologist

Practicing since :1994

Answered : 6232 Questions

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

Brief Answer: Good clinical recovery after meningitis takes a few weeks to months Detailed Answer: Hi, Thank you for posting your query. I am Dr Sudhir Kumar, Neurologist, and would try my best to help you. I have noted your clinical details and I can understand your distress, not only because of the illnesses but also because of doctors' inability to accurately identify the root cause of these. Regarding viral meningitis, I agree that CSF cell counts are below 100 in most cases, however, I have seen patients with counts of 500 on a number of occasions. They have been young and with good immunity. So, viral meningitis can occur in people with good immunity ( about 90% of my patients were young and with good immunity). IgA levels in blood usually would not get affected with viral meningitis. However, it is always good to test them at least two weeks after any infection. Symptoms of viral meningitis such as headache, fatigue, malaise, weakness, etc takes time to completely resolve. Many of my patients take 4-6 weeks to feel good; some may take even longer. Therefore, at the moment, it is difficult to label you as one with poor immunity, however, a review consultation with an immunologist may help to sort out. On a different note, even if immune deficiency is confirmed, there is no specific treatment you can take to prevent infections in future (other than general precautions and care). I agree you do not have a primary psychological disease. However, having suffered from so many medical problems, it is possible that you have medical-illness associated depression/anxiety. I sincerely hope my reply has helped you. I would be pleased to answer, if you have any follow up queries or if you require any further information. Best wishes, Dr Sudhir Kumar MD (Internal Medicine), DM (Neurology) XXXXXXX Consultant Neurologist Apollo Hospitals, XXXXXXX For DIRECT QUERY to me: http://bit.ly/Dr-Sudhir-kumar My blog: http://bestneurodoctor.blogspot.com/