Hi Friends,


In my recent introduction, I said that I would use this forum to see if anyone has any experience similar to mine, or can offer any direction/expertise.

I am a late 20s female. I have been struggling with broad spectrum symptoms for several years now. I had to quit my job because of health issues back in 2013 (my doctor, at the time, diagnosed me with chronic migraines and anxiety. She gave me 4 days of FMLA, and I needed more). Shortly after, I was diagnosed with Mono and anemia for the second time in my life and assumed that all the symptoms were related to those.

In the following years, my friends made comments like, "You are always sick." Migraines was a big one, but sudden nausea, loopy feeling, fuzzy vision were common. Near the end of 2014, I noticed dizziness that had reached an unsafe level. I lost my vision, became very disoriented, and tripped skidding my knee and elbow. I'd come to associate these symptoms with Mono, so I asked my doctor to test me again and it came back negative. I asked if I could have a brain scan, and he laughed at me. So, that was the last I asked for doctor's help with the matter until my most recent flare up of symptoms.

Over the course of 2015, people who saw me regularly commented that my life was not a normal healthy life, and I needed to stop ignoring it and find a doctor who would listen. In April of this year, I finally decided to try to see if a doctor could help me. He told me to try going gluten free, and that's when it started spiraling out of control.

After one week of eating gluten free, my legs went numb, I was having coordination issues/gait cycle weakness and I needed a walking stick to walk. My doctor asked me to go to the ER. I thought that was a bit much so I went to urgent care, and they asked me to go to the ER. Once, in the ER, they didn't want me to leave. I got my catscan, MRI's, EKG, and a number of blood tests. I did not pass the release test where you walk to the end of the hall and back, but the doctor let me go home. Over the next few months, my symptoms progressed, but their frequency was really inconsistent. Some days I was pretty normal. Some days I was in danger of needing to go back the ER. We noticed my feet turning blue/purple. So, we bought a blood pressure monitor and noticed that my blood pressure was sometimes very low. My neurologist finished testing, and told me to start the process of going to a place like Mayo when she found nothing.

My GP wanted me to see a cardiologist before going to a research institution. My heart ultrasound was great, but I failed the Tilt Table Test. Both the cardiologist and the cardiac electrophysiologist said that I failed pretty badly. My heart stopped for 5 seconds and my blood pressure dropped very low when I lost consciousness. The cardiac electrophysiologist says that the problem is not my heart, but the nerves surrounding my heart malfunctioning. He was convinced I had MS before he looked at the results from my MRI and lumbar puncture.

As of right now, my cardiologist, cardiac electrophysiologist, and my GP believe my issue is a rare nervous system disorder or something that attacks the nervous system. I have an appointment with a geneticist in October to look into Mitochondrial disease and am going to a university's neurology department. My cardiac electrophysiologist has me wearing a heart monitor because he wants to convince me to get a pacemaker, but, at my age, a pacemaker is dangerous because I will likely need several and the tissue grows around them making them dangerous to remove. Until I get a pacemaker or a diagnosis, I am not allowed to drive.

TL/DR: Here is a a non-comprehensive list of my symptoms. All my symptoms fluctuate daily and sometimes even hourly:

Head:
-Migraines
-Dizzy/lightheaded (this can last days or a few moments)
-Blurry vision/darkened vision/stary vision
-Cognitive Dysfunction (I sometimes can't remember very simple words, difficulty focusing, difficulty forming sentences and having conversations, people describe me as seeming intoxicated during these episodes)
-Loopy/Dreamlike feeling

Core/Body:
-Shakes
-Spasms (sometimes even in heart. This symptom interrupts my sleep the most)
-Nausea (sometimes difficulty eating)
-Hands will lock up and ache
-Pain in my back and chest that spreads outward like the way it felt when they brushed a nerve in my lumbar puncture
-Temperature increases in different sections of my body
-General aches/discomfort
-Minor coordination issues (typically noticeable when trying to eat or hold a pencil)
-Stomach pains
-Difficult swallowing

Legs:
-Feet will turn purple/blue
-Gait cycle weakness/coordination issues (typically need use of walking stick)

Some days I am fine and can wake up and do work, go for walks, hang out with friends (although, these "good days" are still not a normal person's good day). Other days, it is difficult to make it to the bathroom and I need others to take care of me. I can keep anyone updated who is experiencing similar issues if I receive a diagnosis.

Thank you for all your help/support everyone!

Hi M4ggy

Welcome to Neurotalk (NT).
Sorry I don't have a much time to chat at the moment but I've read your posts and was wondering if you've seen an endocrinologist at all for a full work-up? Many of your symptoms sound as though they may be indicative of an endocrine disorder.
Hopefully catch up with you later.

Hi Bluesfan!

Yes, that is actually the first type of specialist I saw back in 2013. It may be worth circling back to because it is possible that 2013 was simply a drawn out case of mono. I will definitely discuss it with my GP. I am not as familiar with that system to be honest (I know that all my thyroid tests have come back normal). If you do have a moment, I would love to hear more about what part of my story or what symptoms may match up with an endocrine system issue.

Hi M4ggy,

Mono is associated with the Epstein Barr virus - but I'm guessing they've checked that out already - however it can reoccur and lead to auto-immune conditions.

There are several endocrine disorders that could be associated with the symptoms.

Low BP, dizziness, nausea, abnormal gait, muscle weakness, stomach, joint and back pain, extreme fatigue, cognitive dysfunction can all be signs of adrenal insufficiency (Addison's Disease). This is a rare condition so it may not have been looked for in your first endocrine work-up - are you able to get copies of any test results that were done back then? The first one to look for would be an 8am fasting blood cortisol test.

Addison's also has a few other distinctive symptoms which may help you rule it out: loss of appetite but craving salty and citrus foods - avoiding things like bananas (high in potassium). Patches of dark skin pigmentation appearing or dark creases in joint areas.

There are others I'm not so familiar with; Cushings Syndrome, pituitary disorders, Para hypothyroidism. There are also Malabsorption syndromes which can lead to your body not getting sufficient or the right nutrition.

Good luck with getting some answers.

Hi Bluesfan,

Sorry, since my last post things, I've been struggling to stay on top of things. Thank you so much for giving me a lot of options to look into. I've spent some time researching your suggestions.

I am actually taking medicine that is typically prescribed for Addison's Disease to help regulate my blood pressure (fludrocortisone) so I had heard of it. It is my understanding, it has been ruled out. I looked at my records and could not find a blood cortisol test in the past 5 years. Would it be under a different name?

I don't have Cushing's or Para hyperthyroidism. I keep asking about the malabsorbtion issue. They haven't run any specific tests, but my doctors seem confident that they have ruled that out as a possibility. If you know anything else about malabsorbtion issues, such as tests I could request, I will push on my doctors a little further with that one as well. I looked over Pituitary Disorders, some of those do seem possible. I will bring it up at my next appointment. My university doctor is a neurologist that works with auto-immune diseases and she is running several autoimmune tests. So, I am waiting for those results.

Here is a general update as well: I have been diagnosed with Autonomic Nervous System dysfunction, which explains the flat lining/bradycardia, but the doctors agree that isn't a final diagnosis more just another symptom. I have started having pretty intense muscle convulsions with loss of control of body and temporary brain lapses, which are apparently both signs of seizures. I have also gotten what appears to be a second infection in my bladder (which could be a separate issue because my body is pretty worn down)

I am still fumbling through this site, but I really appreciate you reading/responding to my story and trying to help me out. Is there a way that I can get to know you and your story?

Hi Mg4yy

Sorry to hear you're having such a difficult time getting a definitive diagnosis. The Autonomic Nervous System (ANS) dysfunction diagnosis aligns with many of your symptoms. From what I've previously read having ANS dysfunction is something that needs to be monitored as it can affect several different organs in varying ways.

It's good that your neurologist is conducting further tests - it seems as though they are being thorough. As far as I know there is no other name for the cortisol test - it's fairly routine and would most likely have been done as a first indicative test for Addison's - depending on the result a further test called a Synacten Test would have been done for confirmation.

There are varying tests for malabsorption - depending on what they might be looking for. If the results you're waiting for don't indicate anything auto-immune then you might request an Intrinsic Factor test - this indicates if Vit B12 is being absorbed in the gastro tract. Also there are the Homocysteine test and/or a Methylmalonic Acid test. These are more definitive tests for malabsorption of Vitamin B12 and Folate. B12 deficiency can cause neurological symptoms and there are issues with the current ranges used in the US for the standard B12 blood tests - ie: you can be deficient but the test says you're not! There is a very long thread on here about the issue:

STICKY - The Vitamin B12 Thread:

B12 absorption is a complex system and trying to get your head around it at this point may just confuse things so I would suggest skimming it for now. Don't be tempted to start B12 supplementation until you've had testing as it can skew results and you won't have a baseline test for comparison.

Your appt. with the geneticist in Oct could be useful - do you know what they are going to test for? It can be stressful waiting for results when you are feeling rotten so hang in there. I'm also sending you a private message (PM).

They have tested me for a lot. I asked for a list of what all they have ruled out and my doctor sort of laughed at me. So, I feel like you are highlighting a big concern of mine, which is that they are missing something obvious because of a communication issue with all the different specialists or it simply getting lost in the paperwork. I am going to ask for the cortisol test at my next appointment with my GP.

B12 absorption is the first thing that I thought was happening and the first thing that I asked about. I've been taking supplements for years and it always comes back almost double the standard range. My doctor told me to stop taking the extra b12 (outside of what I was already getting in my multivitamin) shortly before the acute symptom flare up. I've since gotten a new doctor and I've switched to sublingual and topical b12 just in case I am having an absorption issue. They insist that I am not having an absorption issue but I wrote down those two tests you mentioned to take to my doctor as well. I will have to take a moment to check out that link. Thank you!!

And Mitochondrial Diseases is the reason I am going to the geneticist (it is still a leading theory), but there is just still a lot that it could be.

And yeah living in the unknown is challenging, but there is always hope that, whatever this is, it is easily manageable or even curable. I don't think I received the pm or know how to check it?

Hi M4ggy

To check for a PM look at the 'Welcome' box at the top right of the screen - there will be a 'notification' message there if it has gone through - click on that and it should take you to your private message.

Hi Maggy,
Please make sure that you have been tested for Lyme Disease, Babesia, Erlichia, Bartonella.
When I look at your symptoms, the migraines, heart issues, failing tilt table test, cognitive issues, fatigue..it could be a tick borne disease that has not been detected and sadly the testing can yield poor results...meaning they came back negative when they are positive.

Personally, I went years with migraines, pain, neuropathy, heart palps, etc and no one could connect the dots until I was sent to an orthopedic surgeon who did the detective work and found it was Lyme Disease and Erlichia . I lost my career to it.

If you want help, let me know.
Sorry you are suffering so and at such a young age. It is heartbreaking.
There are many nice folks here who help a great deal.
Keep plugging away with your docs....I hope you have support of family and friends who come to appts with you and advocate for you.
Welcome,
Diandra