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Curious to get an opinion on symptoms, I have. Currently

Hi - curious to get...
Hi - curious to get an opinion on symptoms
JA: Have you seen a doctor about this yet? What medications are you taking?
Customer: I have. Currently consulting with PCP and Neuro. Neurologist is away for a few weeks and symptoms are continuing, but we think they may align with a disorder and would love your opinion. I take vyvanse 40mg and propanolol
JA: Anything else in your medical history you think the doctor should know?
Customer: Recent diagnosis of seratonin syndrome, but urine test resulted in very low level of seratonin so that's being ruled out
JA: Is this a time sensitive issue? What type of specimen are they testing?
Customer: Not time sensitive. Urine and blood. We were measuring seratonin levels (in addition to standard panels and other tests) great, thank you
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Answered in 6 minutes by:
8/17/2017
Dr. Muneeb Ali
Category: Medical
Satisfied Customers: 8,046
Experience: MBBS, MD, MCCM. Currently working in Critical Care Medicine with 10 year experience in Medicine
Verified

Hi,

Welcome to JA and thanks for this question. I would be happy to help you if you can tell me some more about what symptoms you have been having. Thanks.

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Customer reply replied 3 months ago
Great - thank you. Symptoms began approximately one month ago, when I started Prozac for anxiety (related to high stress at job). I developed what we believed to be Restless Leg Syndrome. My PCP started me on Requip. Restless legs became worse, and we believed it was due to Prozac. We switched to Paxil two weeks ago. Since then, I developed bad tremors, shakiness, restlessness, altered mental state, strange rashes on my knees and hives(?). I do not take anything currently. We thought it may be Seratonin Syndrome. However, a recent urine screen showed less than 10 ng/ml of Seratonin (normal values between 55 - 240, or around there). My neurologist is away for a few weeks. I'm curious if symptoms may align with something else - he's wondering if its Porphyria. In my research today, I found systemic mastocytosis and wondered if that may be it. I'm hoping I can get another opinion/thoughts while I wait for more testing from my neuro.
Customer reply replied 3 months ago
I am more than happy to provide more information, test results, or images of bruising/hives from today.

Do you have any fatigue? Noticed any weight loss? What is your age and gender? Any other medical conditions apart from these? Any fever or low body temperature? Do upload the pictures if you can. What recent tests did you have done, upload the images of those as well.

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And when you say altered mental state, what do you mean exactly? Drowsiness, disorientation? Behavioural changes?

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Customer reply replied 3 months ago
I have had weight loss, but I believe that is due to overworking and Vyvanse (which I have taken for 6 years, sorry - forgot the mention that). I am a Female: 25 years old. I have not have a fever to the best of my knowledge, but I did experience a blackout on four days ago, which I have never experienced before. I had two glasses of wine with my roommate, which is the only change in daily routine that could have contributed. In terms of altered mental state, I would say that was the biggest thing, however, I do seem to be experiencing slightly more memory loss/confusion. At night, I feel both hot and cold at the same time, and I seem to be sweating more than usual. I am uploading pictures now
Customer reply replied 3 months ago
Thank you, ***** ***** way! Appreciate your help and thoroughness
Customer reply replied 3 months ago
Recent tests - we've done a lot. I'll send over the abnormal results in one sec - my neuro hasn't had a chance to review yet so not sure if any are indicative of something or not.
Customer reply replied 3 months ago
Abnormal Results:
Serotonin: <10ng/ml (standard range: 56-244)
Ketones: 15mg/dl (standard range: negative mg/dl)
Hyaline CastL 1.7ul (standard: 0 - 1 ul)
Bacteria Historical: 587 ul (standard: 0-358ul)
Customer reply replied 3 months ago
Also Abnormal:
Anion Gap Historical: 14MMOL/L (standard 3 - 11)
CO2L 20MMOL/L (standard 21 - 31)
Customer reply replied 3 months ago
Apologies: that was supposed to be CO2: not CO2L

Thanks for the additional information, ill just write down my opinion and get back to you in a few minutes.

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Customer reply replied 3 months ago
Thank you!

First off ill assume that they have ruled out the common causes including diabetes, which would be the first thing i would consider. A simple HbA1c test or FASTINg glucose levels should be able to rule this out. While staying on the endocrine system, i would like to rule out simple causes first which would include the thyroid as wel. Thyroid disorders are common and both hypothyroidism and hyperthyroidism in the beginning can cause symptoms like these. I hope your PCP has ruled out thyroid disorders as well. Also addisons disease which can cause the tremors etc is another possibility in which there is decreased production of cortisol in the body and that too should be considered here. Urinary cortisol levels are way to diagnose this problem.

As you can see im not restricting myself to simply neurological disorders, there are various causes of these issues even though some of the symptoms of these disorder dmay not fit in your case, they should be considered as each of the above disorders can present in a variety of ways. Continuing on this theme, autoimmune issues are something which can be considered especially vasculitis given the lesions that you have been experiencing. A simple ESR and ANA level should be done and if the suspicion is high enough then specialized tests like ANCA or a complete ENA profile should be considered as well.

now regarding porphyria that is a possibility to be considered but there are various types of porphyria and the commonest type is AIP or acute intermittent prophyria, if this was opresent here then you should have had some other symptoms like dark colored urine and abdominal or even neuropathy like symptoms. Other types of porphyria would have more extensive rashes. While it is possible, it is less likely given the information that you have provided. Regarding systemic mastocytosis, if that was the case then mast cells should have been increased your system and that should have shown up as increased eosinophils, basophils, monocytes or even platelets in the CBC which i assume was not the case. The only significant abmormality is a high ketone level which can be due to fasting before the tests or due to decreased intake over the last few days.

I think rather than more complicated diagnosis like systemic macrocytosis or porphyria, we should concentrate on RULING OUT simple things like endocrine and autoimmune issues first, those should be the first priority and if that is ruled out then we should look into the other causes. But i feel we should not restrict ourselves to simply the nervous system, these symptoms are too broad and can be due to other issues such as the ones i have highlighted above.

Do you have any more questions?

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Dr. Muneeb Ali
Category: Medical
Satisfied Customers: 8,046
Experience: MBBS, MD, MCCM. Currently working in Critical Care Medicine with 10 year experience in Medicine
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Customer reply replied 3 months ago
Interesting - I agree on the complicated diagnoses being unlikely. We have ruled out so much already, which is why I think the neuro (and myself) are looking toward the more complicated ones at this point. Your information regarding ruling them out based on tests already conducted is very helpful, however! I am wondering if we simply missed, or overlooked, something simpler.

if your doctors have actually ruled out most of the simple things via tests then we can proceed into more complicated things, but i think at this point it would be beneficial to review your whole history and go through the time line with all the tests that you have done. A method i have found useful is to get another set of eyes into the mix, an internal medicine doctor would be best as internists have a broader viewpoint than any specialist, internists tend to think of more things rather then restricting themselves to one system. If your doctor is amenable, see if you can get a second opinion by someone who can actually do a full physical examination and go through everything in DETAIL.

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Customer reply replied 3 months ago
Hmm - perhaps I could run through a few more strange symptoms I've experienced, that we haven't been able to pinpoint? I will say we've ruled out most autoimmune disorders - I'm actually not sure of diabetes, but I am working with a team that's taken a ton of tests at this point. I'm extremely fortunate to have a parent who is the VP of a healthcare system so I have a neuro, a few PCPs, psychiatrist, and a few more working on it - but none seem to really pull all the pieces together which is why I'm turning here (also to get an unbiased view). I understand you have other patients to attend to, and there is absolutely no rush on this. Happy to pay more as well - I just really appreciate the opinion of someone who's not potentially swayed by the boss ;)
Customer reply replied 3 months ago
In the meantime, I can write out the timeline and provide test results - whatever would be helpful

if you have a summary of the whole issue including lab results and the thoughts of your physicians that would be great, a summary can be provided by your doctor if possible.

If that is not possible then a short history with any positive physical examination findings with relevant labs which have been done would be great.

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Customer reply replied 3 months ago
Ok great, thank you!

No problem.

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Customer reply replied 3 months ago
Recent tests conducted are attached - providing dr summaries in next message
I have just browsed through it, I will go into more detail once I'm free from the icu but I didn't seem to find tests for diabetes or autoimmune conditions. Could be mentioned in the next message.
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Customer reply replied 3 months ago
Latest PCP Notes. Still waiting for notes from neuro/psychiatrist and having trouble locating old test results. Our healthcare system is switching to Epic so it's been quite the transition! I do know off the top of my head that I have been tested for Celiac and I believe inflammatory bowel, but a few were eliminated from the same testing to the point that they switched focus to neurological.In terms of related symptoms, one that confuses my neuro is my inability to give blood. I have tried to donate blood 6 times, and each time it clots fairly quickly and I can not complete the donation. Additionally, my heart rate is consistently high - at the highest, in the 100s. And it was 130 while at the ER for the blackout. Again - just mentioning anything/everything.
Customer reply replied 3 months ago
Re: the Ketone comment, there was no fasting or preparation. However, I do think that it could have been affected by physical symptoms? I play a lot of sports, and recently, any physical exertion results in extreme nausea to the point of vomiting and eventually dry heaving - particularly in the heat. That's the other strange symptom I wanted to note.
Customer reply replied 3 months ago
No problem at all on the wait! Good luck in the ICU this evening
Customer reply replied 3 months ago
Also, I'm unsure of whether or not I've taken a test for diabetes. It was my first thought as well. I have experienced moments (maybe 1 - 2x/year) of what I believe to be a huge drop in blood pressure, where I feel extremely shaky and like I will pass out. I generally need to eat something quickly, but it's very scary and confusing. I have always wondered if that could tie into something like diabetes, but I do not struggle with weight or poor eating habits. The only other related symptom I can think of would be, again, a very rare occurrence in which I get dizzy/lightheaded to the point that I lose my hearing for a few minutes.I used to be a gymnast, and that would occur more frequently during those practices.

Sorry for the late reply but it took longer than i anticipated.

Anyway i have gone through the PCP notes and they concentrate more on the anxiety and the panic attacks and they dont mention the other possibilities which we have discussed and even those that you mentioned. They are more in line with management of your anxiety and depression.

Secondly, if there is a problem with the blood clotting too quickly then it would be worthwhile to get a clotting and bleeding time study done which would yield more information here. it is possible that there is a clotting discorder however i would not go for the more complicated tests right now, a simple bleeding and clotting time is good enough to determine if this could be the case.

You have been tested for the thyroid which is fine as well as cortisol levels however i think a urinary cortisol level may still be helpful. Also they have ruled out pheochromocytoma which could be responsible for these symptoms.

Diabetes has not been tested for and it should, just to rule it out definitively.

It is possible that all of your symptoms are explained by syncope which could be neurological in origin. This could be a consequence of autonomic dysfunction which can cause the rapid rise in heart rate, drop in blood pressure as well as the other symptoms that you are mentioning. Conditions like POTS can be a cause which cause the heart rate to change on changing posture. Also a 24 hour holter monitor can be considered to rule out arrhythmias which are irregular heart beats which too can cause these symptoms.

basically the possibilities are quite a few here, and they need to be excluded one by one with additional testing.

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