Ongoing Mystery Symptoms - Looking for Thoughts From Others.

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Hi everyone!

I am a 23 year old female who began experiencing some challenging symptoms in August of 2017, and after looking through many of the posts on this site in an attempt to put some of the pieces together, I figured it could not hurt to go ahead and write my own post to see if any of you all have any thoughts about what might be going on. 

In the summer of 2017, I remember thinking that for the past year or so I had had an increasing number of "episodes" during which I felt a little out of it, and while it was unusual enough that I can recall stopping to think about it, it was not anything that had a significant impact. 

In August of 2017, I began experiencing what I thought were probably symptoms of a urinary tract infection. On and off for a few weeks I would feel a very strong urge to go, but would get to the restroom and realize I really didn't have to go at all. I also had slightly cloudy urine, urine with an usual odor, and an increase in vaginal discharge, Additionally, I was experiencing the out of it feeling more frequently during this time, but thought "Oh maybe I have a UTI and it is making me feel a little funky." I went to urgent care and both the dip stick test and the follow up culture came back negative, so I figured it was something that would just pass, and sure enough about a week later the symptoms stopped for good and I have not noticed them since.

During the last week of the urinary symptoms, I was at dinner with friends when I began to feel really strange. Almost like I had been drinking, like I was on another planet, almost like my vision was not quite right but I couldn't even pin point why. I figured I must have been really tired from my first job out of college and driving a few hours to see my friends, so I went to bed thinking it was temporary. I felt better the next day, but continued to feel out of it at times to the point where I was beginning to wonder if there was something more significant than fatigue at play, but I still didn't take any action.

Things took a turn a couple of weeks later in mid-September. I had an unsettling onset of symptoms - long-lasting headaches, blurry vision that felt almost tunnelish, visually felt like there was a thick layer between me and my surroundings, felt uncoordinated like I was moving through jello, heart palpitations, noticed strange sensations in right foot, leg, and arm, lack of appetite, mild nausea, and fatigue - just completely like I was in a fun house. Other than the headaches which I probably got every few days, these symptoms were not on and off, but constant. 

My primary care physician, who I see maybe once a year, could tell that something was really off and ordered a round of basic labs - CBC, thyroid, metabolic panel, etc. that all came back normal. When the symptoms were getting worse instead of better heading into October, and there was still no "answer," she decided to go ahead and order an MRI of my brain since I have never had a similar issue or any sort of issue. The MRI came back perfectly normal except for some minor white matter changes, which took us down a road of "Could it be MS?" for some time due to the neurological nature of some of what I was experiencing. Had a local neurology consult, a lumbar puncture,  a second MRI in December, and even a visit to the Mayo Clinic in January that all confirmed absolutely no MS. 

EVERYTHING was tested for back in October - lyme disease, other tick-born illness, Myasthenia Gravis, more detailed thyroid testing, heavy metal toxicity, Vitamin D, B12,c-reactive protein - and even MORE was tested for when I had a lumbar puncture when MS was on the table - they did it all and I am incredibly thankful. The only abnormal results that have come back throughout the entire course have been B12 in 300s (neurologist originally wondered if this could be a contributing factor and prescribed a course of injections), dropping white blood count (down from 8 to 4 from September to November and now back up to 6), low carnatine and acetyl carnatine, and slightly elevated copper.

Since the height of the symptoms in October, things seem to be gradually improving, or at least changing in nature. For a while, I was not functional - took three weeks off work, stayed in bed all the time, could not even watch movies due to discomfort with symptoms. Only thing that seemed to slightly help was if I took Sumatriptan for a bad headache, the headache would go away, then half a day or so later some of the head/eye issues would feel a bit less severe, but still definitely there. By the end of November, I was not having headaches, my vision returned to normal, I just felt like there was physically a layer between me and the world all the time due to this "feeling" in my head/eyes/behind eyes and had the sensations on my right side. Now, I still don't have headaches or blurry vision, the "layer" has decreased, the sensations are mainly in my lower calf and foot, I have an appetite, I don't have nausea, and I am definitely less tired, BUT I have this feeling in my head (almost like there is "something" between my brain and my scalp) and also in my eyes (like there is a coating of wax (especially in the back) around them even though I can see perfectly.) It is not painful at all, it is not pressure, it is absolutely nothing like a headache - just like an unsettling sensation with slight movement but not dizziness or vertigo or anything like that, and it is not episodic, but constant - there 24/7. It feels unsettling and almost claustrophobic and just ALWAYS there. Between the beginning and the present, there have definitely been "phases" - had pain behind right eye for a few weeks in November, had stronger sensations in right leg on days after B12 injections, felt like the "nerve strings from my eyes into my head had been scorched" even though that makes NO medical sense, just some random things like that that were difficult to put into the "big picture" of whatever we might be looking at. 

The only "action" that has been taken between the onset and now has been the B12 injections in October and November, prednisone taper for six weeks from beginning of November through December (neurologist thought inflammation could be a factor and DEFINITELY noticed an improvement on steroids, though steroids improve so many things it's hard to say what was going on there), and a multivitamin (Smarty Pants for Women) and sublingual B12 daily now. Wondering what all of these things may be in factor in improvement or current symptoms?

I am of a healthy weight, I ran five days a week before this came on and still run when I feel up to it, and I have an insignificant medical history other than a typical case of mono in the spring of 2016. I take birth control and a probiotic both daily (and have taken both for almost five years), but do not take/have not taken any other medication other than what is listed above.

I apologize that this has been so lengthy and so all over the place. Just wanted to include as much as I could since there have been a lot of little pieces. My mind has been everywhere from MS to vitamin deficiencies to vasculitis. My parents are physicians, and have been incredibly helpful, but there is just no "answer" which makes the process a challenging one. To take a common line from these boards, I am just feeling like I want my life back. Hope right now from all involved is that it is something viral, or at least something that will fade completely, but just wanted to see if you all might have any insight!

Thanks so much in advance!

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  • Posted

    The fact that your white cell count probably rules out mono, though I'm not completely sure. For me and most people here the white blood cell count have increased.

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  • Posted

    The fact that your white cell count have decreased*
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    • Posted

      Hi!

      Yes, I am thinking the same thing, as I too had an increased white blood cell count when I had mono a couple of years ago. My mom said she felt that it could be related to the steroid, could be some process related to the symptoms, or could just be a completely unrelated fluctuation. 

      For some time I felt it could be related to B12 as I have never been much of a meat eater, but after speaking with different doctors as well as with some individuals who have had similar experiences, it seems that there is a line of consistent thinking about "post viral syndromes" that can cause atypical symptoms like the ones I have been having. Basically just things that flare up and very gradually improve until your body can shed the symptoms for good. (Mom even read a few articles about how prednisone helped these people who were having inflammatory response due to virus.) ANYWAY, hard to know for sure, but so interesting to hear about these more "muddy" conditions that seem more common than I ever realized. 

      I have seen some of your comments/posts, and it sounds like you have had a challenging experience with mono, so wishing you all the best with recovery! I was actually studying abroad when I had it so was slow to finally go to the doctor to what was going on and ultimately time was the ultimate healing power. Thanks so much for your comment and hoping you feel 100% before long!

       

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  • Posted

    Hi Catherine,

    Thanks for sharing your story, I just want to say that I really empathise having been through tough times like this myself recently. I had mono 10-11 years ago, it was very tough to go through and come on the forum just to try and encourage others really about it, but recently for the same timescale you have been suffering, I have been going through issues with my back and more recently something similar to you in terms of problems with urine / bladder / prostate. It really is horrible and it's got me really down too.

    Just want to let you know I'm thinking about you and believing that you still will get better. I trust God with that for you Catherine. You have been through so much and deserve things to get better. Maybe trying some vitamins and herbs may help - what helped me a lot has been a good strong multi-vitamin per day (I know you're trying this and B injections), high doses of Vitamin C (1000mg-3000mg per day), B100 complex / Co-enzyme Q10 (for energy levels and nervous system function) and immune boosting herbs like siberian ginseng / echinicea. These can certainly help boost your immune system and hopefully help you feel a bit better.

    You just hang in there Catherine - I do believe in full recovery for you and everyone on the forum and reading these posts, thanks to Jesus.

    You must be so tired and weary I know - it's at the point when things seem at their worst and that you can't hang on a minute longer than you should just try and hang on, because that is when the tide is about to turn. Thinking about you and hang in there.

    Craig

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    • Posted

      Thank you so much, Craig! 

      I am so sorry to hear that you too have been having a hard time. As my doctor put it to me, it can be really hard to deal with the day to day of an "illness" that no one can seem to name. 

      The Mayo Clinic had similar recommendations about immune health. I even did a no gluten, no dairy, no soy diet recommended by my local doctor for some time to give my system the most support possible (And was curious about my long-term eczema issues from a more wholistic perspective than keeping at bay with a topical steroid). That is good to know about the other vitamins and herbs though because at this point I am on board with anything that will carry me through to the end!

      Ultimately, I am hoping that with time, patience, and self care it will resolve. 

      Thanks so much again and hoping that you find some resolution as well!

       

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    • Posted

      Thanks Catherine,

      Your kind words mean a lot to me too. Been having a really hard time of late also. I just pray God helps us through and gives us new strength and hope and life again. I believe He will if we don't give in. It's not easy I know. Hang in there Catherine, thinking about you today.

      Craig

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  • Posted

    Hello,

    I don’t have an answer for you but I just wanted to let you know as someone who has been dealing with a medical mystery for the past 4 months, I appreciate your worry and frustration. Please remain positive that you seem to slowly be getting better and stay optimistic that your head sensations and eye sensations will too lift. 

    In regards to blood work, if your bloods were taken after initial infection they may look normal. Also, if this is a virus.. some viruses have “atypical presentations” meaning they don’t follow the normal symptom presentations and may not be evident on blood work (this was explained to me by an internist). 

    Wishing you continued healing! 

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    • Posted

      Thanks so much! It has been difficult for sure no it is incredibly comforting to hear from others who understand. 

      My parents, doctor, and doctors at the Mayo Clinic all said the same thing about atypical presentations of viruses. Basically that post viral syndromes can arise and for some people shedding the symptoms is a long process. While the case of mono I had in 2016 was typical as far as symptoms go, it was a slower/bumpier recovery than a lot of my friends with mono experienced, so I've been thinking of it though that lens. Kind of like slowly scrubbing away a stain until one day it's finally gone!

      Thanks so much for the kind words and wishing you all the best! These things can be a journey for sure.

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    • Posted

      Thank YOU for sharing, it is always comforting when someone else gets told the same thing and goes through something similar, though I wouldn’t wish it upon my worst enemy. We will get better! If you need reassurance this is a great place everyone is so understanding and more than willing to share their own stories smile cheers 
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    • Posted

      I’m slowly getting better. Was feeling like I had walking pneumonia is October but it was mild so I kept going with life. November fell very sick, being bed bound for weeks then house bound then better back to bed bound, house bound then better again. Each “crash”

      is shorter and less intense but some days are very difficult indeed lots of anxiety, chills, pains, shortness of breath. But I know I’m sloooooowly better ... just might take time. 

      If possible,  consider taking time off work or school to allow your body to relax and heal. 

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  • Posted

    Hi Catherine 

    I’m sorry to hear you’ve been and still going through a rough time. I’m cetainly no expert in the area but I’m recovery from glandular fever 7 months in and had similar nervy feelings! It’s hard to describe but early on it felt like I had pins and Neadles across my nose for months - to the point where I felt I could just pull it out of my head!! Crazy. 

    It drives you crazy looking into answers I know! But I wonder if it’s just part of the post viral fatigue - my story is similar to yours ran lots kept mega fit bit kept of getting run down and then boom.

    Have you tried acupunture ? I found this to be really effective.

    I hope you get to the bottom of your illness and keep getting stronger and stronger. I’m

    Sure you will. 

    Catherine x

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    • Posted

      Hi Catherine!

      Thank you so much for your kind comment. 

      The "I felt I could just pull it out of my head" is EXACTLY what I have said when trying to describe the sensation throughout - If I could just grab this feeling with my hand I'd feel normal again!

      So incredibly true about the search for answers - I think like you the key is stop pushing myself and to just give it time.

      Glandular fever sounds like it can be incredibly challenging, and I wish you all the best with your recovery. Comforting to think that this will be behind all of us one day even if that day isn't tomorrow!

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    • Posted

      I think everyone is different but I’ve found it extremely helpful.  Would defiantly recommend it. The feeling in my face has faded now. At the time I used to feel like it was the main source of the virus and just wanted it removed. Sounds bonkers! It’s reassuring that other people have these bizzar feelings - our body’s are such complex things.

      Sending you lots of recovery vibes your way and make sure you are kind on yourself rest when you can x

      A friend of 

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  • Posted

    Hello, I had mononucleosis in the spring of 2016, and I didn't even know I had it at the time, only found out half a year later on the tests. However, exactly since the spring I began to have the 'episodes' where I was completely stoned, drugged/drunked-like, with massive fatigue. Also, I had the itching after peeing and my urine was strong odour and also stronger color. I had a lot of other symptoms as well and now it is 2 years since the onset, still recovering. My diagnosis was not really 100% certain, but there is nothing else left so I think it still due to mono. Actually, my lymph nodes had swollen only 3/4 year after the onset, so these delayed symptoms may not be so rare with mono. Well if it really is mono.

    Hope you recover soon, Lob.

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    • Posted

      Hang in there Lob, still thinking about you and really hoping and believing that you will get 100% better still, even after this length of time. It is a very misunderstood virus and 2 years on to be struggling is not uncommon for some unfortunately it seems. I was doing much better after 2 years but still had some mini relapses and things, but these faded after time - for example another 2 years down the line I was much much better than the first 2 years if that makes sense. Just want you to know that there is hope, and even after such a long time, recovery is still happening and will come completely.

      Craig

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    • Posted

      Hi Lob, I have swollen lymph nodes under jaw, armpits and I think everywhere they are swollen to some point. But the jaw neck are is the part where they cause discomfort most of all. How long did your lymph nodes remain swollen?
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    • Posted

      Well, they are still swollen after 2 years, but  they started to swell only around 3/4 year into the illness. However, Im still fighting, so it makes sense they are swollen.  They are not as painful as they used to be though.
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