obsessing

 I find I obsess more when I keep things inside that's why I share so much, more than what most people feel is comfortable.

I've written a little on facebook about the health issues I have been dealing with but haven't really updated as much as I'd like so here I am to get it all out and hopefully stop obsessing about it.

the very beginning...ok not the very beginning because that was when I was 18 and got my first surprise health news...you've tested positive(false) for Syphillis, I think I've written about that before. Many years of off/on stress about whether or not I had lupus. About 15 years ago I decided to just live my life and stop dealing with something that wasn't really causing me too many issues (or so I thought).

COVID changed all of that, no more pretending I don't have an autoimmune disease. My first symptom that prompted a doctor visit was my right ear bothering me last January or February(2020). It started out like water in my ear. I was just putting alcohol in it, taking some sudafed  and ignoring it. Then it started to be a heartbeat in my ear. Nothing overly annoying but I googled it and the causes could be quite alarming--blocked carotid artery, some sort of vessel malformation or twisted vessel in the brain or just anxiety. God knows I have that so I just assumed it was that. I blame everything on anxiety or perimenopause. I had a doctor checkup for my thyroid and mentioned it to the nurse, she looked in my ear and didn't see anything and acted like it wasn't a big deal, so I let it go. About a month later all hell broke loose and we lost our insurance. The heartbeat began happening more regularly, lasting longer and with everything else going on in the world I just assumed it was anxiety related. I remember one day it being really bad, lasting most of the day, it was a Sunday and I decided if it didn't let up I'd call the doctor on Monday and make an appointment, even though our insurance was 100% out of pocket for the first $6000. That's how annoying and scary it was becoming. Monday came and I had no issues, so once again I put it off. 

Because of the extended time out of work, we now qualified for MediCal. It could have started as early as October but we figured it was just as easy to wait and begin on the New Year (don't ask me why, in retrospect it seems silly, probably the stigma of being on "welfare"). Once the New Year hit, it took a little time to get the insurance cards and finally I was able to set up a checkup. Of course it was done on the phone, but at least I got a REAL doctor, not a NP or PA. She listened for an hour while I went over the symptoms that were most concerning to me and I mentioned my family history --my mom had a blocked carotid in her early 50's, but she was a smoker. The doctor referred me to an ENT but said we might as well get an ultrasound of your neck, they'll most likely order one anyway. I'm going to try to condense this because this post wasn't even supposed to be about this "old news". Basically the ultrasound said I had a blocked carotid on my right side (50%). I later read that ultrasounds have a 7% false positive rate, I try not to get too rattled, because I've dealt with false positives before (the syphillis). After a CT scan, MRI and MRA, turns out...no blocked artery...yeah good news, right? Well.....the scan showed some kind of venous angioma in my brain. I have the neurosurgeon appointment scheduled next week so I still can't definitely say it's nothing to worry about, however the ENT and my GP both think it will just be a watch and see situation. 

I also had an EKG, because I mentioned the heart palpitations that I also blame on anxiety and that I had a run where I was in zone 5 the entire run ( you should only be in zone 5 for short bursts of intense activity). The EKG showed something up with my T wave...months later and many tests later, that too was apparently just an anomaly that happens sometimes with EKG's.

So I think everything is done and fine and head for a follow up because my thyroid dose had to be changed, I was hyper instead of the hypo I usually am. (hyper could also explain the heart palpitations, and maybe even the ear thing, which was being much less annoying lately) She was blaming the adjustment being needed on my big weight loss (more than 15 lbs in 3 months--and on purpose loss, so not worrisome). However it turns out my mom experienced the exact same issue I had....super low TSH, but normal T3, T4. A google search shows that some COVID survivors are experiencing that as well...hmmm....

So back to what I think is my last appointment for at least 6 months. I mention to her that I never really got an answer about the leg symptoms I had reported in January. I have a tingly sensation occasionally in my left leg and a gripping one on my right calf, which has now progressed to being in my knee and buttocks and sometimes back as well. I had had an ultrasound which showed only one varicose vein that wasn't noteworthy., but my problems were persisting.

We had discussed a lot of the other symptoms I have had in previous visits, and she indicated that most of them sounded like symptoms from my auto immune disease and hinted i might want to see a rheumatologist again to get a more specific diagnosis than my current "undifferentiated connective tissue disease". I didn't bite, I've been down that road for so long and it never gets me anywhere.

This visit me mentioning the gripping and being able to show her what I meant instead of just describing it (plus she wasn't the doc I talked to in January, that one retired) prompted her to ask some more questions. I mentioned the vision problem I have in my right eye that no optometrist has been able to find a cause for, it's been going on for about 7 years. And this is when she almost insisted that I see a neurologist. I had mentioned that I had been reading up on MS and that I didn't want to go through the process of trying to get diagnosed with another nearly impossible disease to diagnose. And she disagreed and said it isn't always that hard to diagnose, sometimes it can be simple. So MS was what she was thinking. She told me that I've already had the MRI and it would be very helpful to have a specialist check it out and then mentioned the next step...spinal tap, which is why I don't want to go down this road either. I think I mentioned something about being a hypochondriac and she quickly dismissed it, saying that she hasn't ordered one test that I didn't need. I mentioned that there really isn't any treatments anyway until you progress to a certain point and she said there are diet changes that could help stop progression if I did end up diagnosed. She was very patient with me and very persistent and so now I have another specialist to see. Still waiting on the referral and who knows how long til I get an appointment....I am just so glad to have "good insurance' now.

But wait...that's not all. Last time she also pressed me to have a vaginal ultrasound because I had 30 days of spotting during a period earlier this year. Due to lots of incompetence I only had that appointment a day before this follow up so she didn't have the results yet. I did learn during the testing that I have an ovarian cyst on my right ovary (not a big surprise, I kind of always knew when I was ovulating due to a tiny pain around that area (probably what the psychic was referring to, if you remember that post) but she said she wasn't looking for that, she wanted to know the thickness of my endometrium. So fast forward 2 days, she gets the results and calls me personally because I told her I am a worrier and she didn't want to just message me through the patient portal (gotta give her props for being so caring).  So my endometrium is thick, but not necessarily worrisome because I am not in menopause yet (or so we think, I hadn't had a period since April..however I did tell her I ended up spotting the day before she called...which ended up not amounting to anything). So now we are at the see a gyn stage. She said maybe they will just think she's crazy that this is perfectly normal or they may want to do a biopsy, which is apparently just a PAP smear on steroids.

And there it is....I still have 3 specialist appointments ahead of me (not counting the cardiologist and ENT, both I plan on cancelling, because "Why?" If nothing was found what am I following up about...it's over and done with. The ENT said the brain thing isn't at all related to the heart beat thing and yet didn't offer up any reasons or solutions or future tests, so why go back? I have enough other docs to see)

So 6 months later, I still have no idea why I hear a heartbeat in my ear (and it started up again more frequently, seems to be somewhat related to how I tilt my head, but not always--anxiety? not thyroid, that's normal now). 

Last summer I also had a bout of muscle twitching and spasms, which I had never even mentioned because they seemed to have stopped for the most part. This is also an MS symptom. It is possible that I had COVID and the virus started me on a road of having MS (viruses can trigger it) it could be my autoimmune disease finally revealing itself as MS or it could be just symptoms of an unknown vague autoimmune disease. The unknown is making me crazy and suffering quietly with only a few people knowing is making me obsessive.

Couple this with deciding to try to follow this "diet" that supposedly helps with all of my mood symptoms and the physical ones too and I am getting cranky. The diet basically eliminates everything humans love. No dairy, no wheat, no soy, no eggs (easy! already did that), no pork, no corn....what the hell do you eat??? Fruits and veggies (but not corn for some reason--explained but not worth going into here), chicken, beef are allowed but moderation. And you drink juices every day Celery in the morning and Cucumber at night. Not nearly as horrid as I thought although the cucumber is starting to turn on me. Also not a fan of lemon water, which is 32 ounces a day.

I checked out the diet my doctor mentioned for MS...and it's even worse...no beans either. I 've already lost 2 pounds in 2 weeks slowly eliminating stuff while drinking the juices, the first week we still had ice cream to clear out of the freezer and tortilla chips to eat. The cleanse I am doing now is only for 90 days...which feels like a lifetime. If it turns out I have MS and have to give up dairy for life?? I dunno if I can or want to do that. And it's making me grouchy. It seems stupid to hurt your health for food. 

If I get the diagnosis I will do more research, because there are opposing views on MS diets (although they do agree on no dairy). Personally after having done the food sensitivity test, I think that might be the real truth about what's best for each of us. We are all individuals, maybe my body tolerates stuff other people don't. My test said cheddar cheese and cottage cheese is ok and almost all other dairy wasn't, I could probably deal with that. I really don't miss ice cream and tried a dairy free version (loaded with sugar,, unfortunately) that was pretty good. 

I am trying to stay positive because I have fell for enough of the fears this year with the other false positives, but it's hard to do with a brain that tends towards worst case scenarios.

If you read all of this, thanks! I really needed to write this just to get if off my mind, even if no one ever gets this far!