Numbness that comes and goes and more...

[liv11203]

I'm a 17 year old female and have been experiencing pretty sketchy symptoms. In November 2014 I had about a week long episode of numbness all around my body. It didn't occur on one side of the body or in the same place every time and always went away and then returned. I visited the ER- they didn't do much- just lots of bloodwork which all came out fine (including B12.) Visited primary care doctor too and they did lots of bloodwork ruling out HIV, and more STD's. These sensations completely went away for two months and came back about a week and a half ago. The sensations almost feel like tightness on my skin and sometimes occur only in patches. One moment it will be on my left arm and then a couple hours later it would occur on my face. Also haven't experienced any pins and needles sensations. I can also feel sensation in the area that's numb (like when I touch the spot.) Only a few times did I experience weakness in a limb- but none of them corresponding to right or left side- always random.
Fast forward to the second episode (now)...I just got back from the neurologist today and he noticed that one of my pupils is only slightly bigger in one eye. He also noted that I have indistinct optic discs in my eyes (whatever that means?) but he was pretty clear that he wasn't concerned and said it was "within the range of normal." He mentioned my reflexes were a little bit brisk (legs specifically I think) and told me he would do an MRI of my head to respect my concerns, which will happen within the next month or so. He ordered me to set up an appt with the eye doctor too and told me again he really didn't think it was anything serious.

I had a fairly rocky past summer in terms of health- got pneumonia, pink eye a few times, 3 courses of antibiotics etc...
My twin sister has IBD and my dad had ankylosing spondylitis (both autoimmune diseases) so I'm very concerned! Had *serious* problems with anxiety ever since this summer and due to my dad passing away from a brain tumor. Have tried researching whether this could all be thanks to anxiety. Any thoughts?? Please!!! I'm driving myself crazy and pretty much have diagnosed myself with all the scariest stuff out there.
Also- not having problems with vertigo, vision, balance/coordination, speech etc. The neuro I saw today said everything was clear except for the eyes and slightly brisk reflexes, which he said could all just be nothing. I also have mild scoliosis and a swollen lymph node right below my jaw line. I have pretty bad sinus problems (allergic rhinitus) so I was told that could be why it is swollen. Lastly, I have a tendency to tilt my head to the left ever since I was little and that's basically the way it sits on my shoulders all the time. Maybe that could be messing with my nerves?....don't know if any of that is relevant.  PLEASE help!!!!!!!!! Thanks

[caregiver222]

I believe you have some genuine medical problems.

It is very difficult to find a physician to listen to a person. There are many reasons for this. Usually they only want to hear :one complaint at a time".

First off, I suggest you purchase two books, both by Dr. Jerome Groopman. The first is "How Doctors Think". The second book is titled "A Second Opinion".

Reading this material will help you in navigating the complexities of the healthcare system.

Just remember that "the squeaky wheel gets the grease." Keep complaining.

Probably a specialty called a neurological opthamologist would be the person to call for a consult.

As far as the bloody noses go, you need a ptt blood clotting test. That being said many people get bloody noses and they never find the reason. This is often due to a shortfall of vitamin K, which is manufactured in the gut, and is often chronically low with patients with IBS. It is too dangerous to take vitamin K supplements, howver you should take a daily multivitan that has "K" on the label. Not all of them do. Usually the dose is 25% of the daily requirement.

You really need an in-person work-up, preferably at a teaching hospital.

Best of luck.

[liv11203]

Two more things- my swollen gland is called a submandibular one I think...right below the corner of the jaw line. That's not near my thyroid correct?
Also have been experiencing eye pain yesterday and today...

[liv11203]

What kind of doctor do you suggest I see next?
I'm headed to the ophthalmologist on Friday to hopefully sort my eye abnormalities out.
It's all very frustrating!! My family and every doctor keeps telling me nothing is wrong and it's all my anxiety but I just genuinely do not believe that.
Also- A LOT of blood has been drawn from me since November...you don't think they would have picked up something from it by now? I noticed the swollen gland in November and pointed it out to my doctor and she said it's nothing to worry about- even pointed one out on herself in the exact same place.
Also don't know if this could be related (definitely could just be my allergies) but I've been having constant bloody noses- whenever I do my sinus rinse blood will come out. It's probably been that way for a month or so. Not an alarming amount of blood but still...

[caregiver222]

This is a guess, and there is, of course other possibilities, however your symptoms are textbook for low levels of ionized calcium.

This is tricky. Causes could be kidney disease, low levels of vitamin D,(this a vitamin D3 level test is essential - it should read over 30) or parathyroid malfunction. There are four parathyroid glands and things are not as simple as taking labs. A common cause is what is called a parathyroid ademoma, which are almost always benign. Since you have four glands there may be a tumor on one, two, three, or four of them,

Diagnosis in the United States is by Sestambibi parathyroid scintigraphy, and this doesn't always pick up the growths.

Low levels of ionized calcium can cause calcium to be drawn from the bones causing arthritic symtoms, including knee problems.

The glands produce a polypeptide, which is a signaling substance. When this is produced the labs and calcium levels may be normal. Thus, the problem can come and go.

[liv11203]

Thank you so much for responding!!! I'm pretty sure they drew blood to check my thyroids when I took a trip to the ER two months ago...would that be sufficient enough to lean towards ruling out parathyroid malfunction?

I've also read that it is recommended to get a brain MRI AND a spine MRI when beginning to diagnose MS...is this something I should request/be worried about? I'm already scheduled for a brain MRI but not one for the spine.
Is it possible that this could all be due to some form of arthritis? Trying to hope for a less terrifying situation here- the worry is crippling! I had back pains this summer when waking up that only went away with a hot shower and movement- happened in upper back first for about 2 weeks, then in lower a few weeks later (hasn't happened since summer.) I also recently have felt pretty achey at night. About three separate times I've woken up with severe pain above my left knee-cap that is only painful with movement. After about a day it just goes away. The last time it happened was probably a month ago though.
Thanks again for your help I appreciate it a ton

[caregiver222]

Could be a lot of things.

Rule out hypocalcemia and parathyroid malfunction.

Get an appointment with an endochronologist. You need a PTH (parathyroid hormone test).