Ongoing Mystery Symptoms - Looking for Thoughts From Others.
Posted , 3 users are following.
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!
0 likes, 2 replies
sarah40069 Catherine00000
Posted
I’m sorry for your struggles especially when your so young. My first thought was diabeties when I read about the blurry vision but I assume you were tested for that. Could you be coeliac or has that been tested for? Even if you’re not coeliac your gut health could have something to do with it. There’s been a lot of research recently into how your gut microbiome can contribute to your overall health. If there’s an imbalance of bad bacteria over good bacteria it can cause many different health problems. Have you had many antibiotics in your life? Have you been on the contraceptive pill, had a lot of stress recently? You don’t have to answer those, but if you have they can all have a massive impact on your gut health. Inflammation anywhere in the body can be traced back to gut health, so if you’ve been told inflammation is a factor then this could be an indication that you’ve got some gut issues.
Obviously I’m not a doctor and I only know what I’ve researched for my own health issues, which range from anxiety, brain fog and digestive issues. I’ve found a lot of credible information on YouTube and follow people like Dr Kelly Brogan and Dr Axe. There’s also a guy called James who has a channel called Health Recovery. He suffered with CFS for 7-8 years from the age of 16 and recovered only by changing his diet and lifestyle as doctors had no answers! His story is inspirational.
There’s also a guy called Dr David Perlmutter who’s written some books about the brain. I’ve ordered one called “brain maker” all about your diet influencing your brain. Since a lot of your problems are neurological it might be worth checking out.
Hope this helps a bit xx
Catherine00000 sarah40069
Posted
Hi Sarah!
Thank you so much for your response.
I have actually been curious about the possibility of food allergies in the past because of some eczema that I have had since I was a young child (used to be on feet, then elbows and knees, now arms and scalp). It didn't really "click" for me until a neighbor who is a functional medicine doctor framed it as - "Well yeah your skin is probably trying to tell you something!"
Celiac was brought up in the fall and I tested negative, and it doesn't seem that food is THE cause since I have improved over time, but I definitely think you are onto something about it being a factor.
My mom and I have actually started a no gluten, no dairy, no soy diet that was recommended by my local doctor. She said while it is likely not a "cure" for what has been going on, it certainly won't make me feel any worse, and she has had a lot of patients with more mysterious sets of symptoms speak of how they felt it was a great way to support their entire system through support of their gut.
So essentially YES - I think you are absolutely correct about the importance of gut health! I'm kind of approaching it with a "why not" attitude. Even if it does not heal these specific symptoms overnight, it seems like a very healthy way of eating (my mom has cooked according to the Mediterranean diet for a long time so kind of feels like a step beyond that), and maybe I'll find that my skin improves after some time.
I think I also just like the approach in general. Thinking of the body as a system instead of just treating specific symptoms. Seems like the way to go when there aren't black and white answers!
I do take birth control, and I do not have much stress (other than the temporary stress of this illness).
While I would not wish this experience on my worst enemy, it seems there is at least some good in the bad. Slowing down, thinking about overall health, not running 100 miles an hour all the time. Just some things I think I will continue once this is all behind me!
I too have heard some really interesting stories about people that feel SO much better once they step back and change their diet - Really is interesting and am so glad these factors are being talked about more now.
Thanks so much again and I will keep you updated about the diet!