Can't get any answers. I don't know what to do. Brain fog and more.

Hello Everyone,

I'm not sure if I posted this in the right area, but this is the closest thing I could fine.

My name is Joey and I have been having quite a few medical problems the past few years. Before I get started, I'll give you a little background about myself. I am a 23 year old male, 5’10”, 160lbs. Before this, I haven’t had any major medical issues, and have been very healthy most of my life. The only diagnosis I’ve had before this was a slight case of ADHD.

It’s hard for me to decide where to start, but I guess I’ll go from the beginning. I am sorry if this all over the place and/or it is confusing. Please feel free to ask any questions.

In September of 2011, I started getting sick, quite a bit. I was getting a lot of sinus infections and had a few cases of tonsillitis. I started seeing an ENT, who was giving me antibiotics to help get rid of the infections. I made sure to follow the directions to the dot. After I was finished my script, I was feeling better.

However, in December of 2012, I got extremely sick, with an infection, and something else, which cause me to be in bed for a few day. This is where all the problems begin. After I finished my antibiotics, I was feeling better, but not 100%. I went back to my doctor, and he said the infect went away, but we made sure to schedule a follow-up appointment to make sure. I went back, and everything checked out, but I still was not feeling well.

From there, it went downhill. I started feeling worse and worse over the next few months. I kept following up with my doctors, but they couldn’t find anything that was out of the ordinary. In August of 2013, I ended up getting a surgery on my nose/sinuses to help with my breathing and the infections. I can’t remember the exact names of them, but I know I got a rhinoplasty, a balloon sinuplasty, and something to clear up my nasal cavities. I assumed this would help me sleep better, and feel better, but it didn’t. As time went on, I kept feeling worse.

I’m skipping a bit here, because nothing major happened. I assumed if I just waited it out, I would start to feel better. After about a year, in November of 2014, I still kept feeling worse. So, I went back to my doctors, and he ordered a sleep study. It turned out that I had a moderate case of OSA (Obstructive Sleep Apnea). So I went to a special, who gave me a sleep machine. That didn’t help, because I kept pulling it off in me sleep. I talked to my ENT about other options, and once he did a Sinus Endoscopy, he recommended that I get an Uvulopalatopharyngoplasty (UPPP). We decided that this was the best option for me. I got the procedure done in March of 2015, and I am still not feeling any better.

I have got a ton of lab work done, including CBC’s, Most of my hormones, and got checked for quite a few different diseases. I just got an MRI, and have an appointment scheduled with my Neurologist to go over the results. I also have to schedule another sleep study to see if my OSA is cured or not. I have more labs to get done, as well.

Does anyone have any input? I am not sure how much longer I can take this for. I work 45+ hours a week, and when I’m not working, I’m just laying around because I am so exhausted and just generally feeling unwell. I used to be a very active, social person. I’m starting to get REALLY depressed because of how debilitating this is. It’s been very difficult to get my stuff done because of how tired and crapty I feel all the time. It takes me forever to get lab work done, I miss appointments quite a bit because I don’t feel like getting up, my car and my house are messy because I don’t have the energy to clean. I have so much stuff I need to get done, including a ton of financial stuff, as well.
This is the complete opposite of who I am. I have always been a happy, outgoing, fun and energetic person, but now, I don’t ever socialize, I never have energy, I can’t keep my own stuff clean, I barely get by at work (and, again, I used to be a really motivated person who would go over the top to impress someone).

I am BECOMING depressed and anxious from feeling like this all the time. I am worried that I will never feel better and just become a lazy, unmotivated, mean person. I don’t want to hear about how this is probably depression, because I’ve heard it enough, and I know it’s not that. I’ve even already tried so many anti-depressants, just incase anyway.

If I keep going in the direction that I am, I am probably going to end up getting even worse from all the medications I am taking, but I have to take them just to get by.

Also, my symptoms include:
- Brain Fog (like a cloudiness in my head that prevents me from thinking). This is the worst one.
I used to be great at math, but now it’s difficult for me to do a simple problem. I can’t think of words (tip of the tongue) all the time.
- Can’t concentrate
- Pressure on temples. Like something is pushing through my temples and poking my brain.
- Headaches/Migraines
- Sore muscles (especially my legs by the end of the day, and also in upper back)
- Fatigue
- Trouble falling asleep
- Depression/Anxiety from feeling unwell
- Memory Loss (Short term most, but long term as well)
- Lethargy
- Waking up tired/unrefreshed
- Reduced Sex Drive
- Extreme Irritability
- Changes in personality
- Temperature intolerance
- Impaired or “Dulled” Emotions
- Frequent and Difficult Urinating

I can't really think of anymore at this time, but there are probably a few more.

Please help me. Any type of input would be great. I don’t know what to do and I’m getting to the breaking point. Any suggestions at all would be appreciated. I was thinking of trying to take some time off work to try to figure out what’s wrong, and so I can stop taking so many meds (time to withdraw). Also, so I can catch up on my personal stuff, but I can’t bring myself to do it. I need the money, and I would just feel so bad if I did. And since I am a young “healthy looking” young man, I doubt I could get any doctor to support my decision.

Thanks for reading,

ViaJustJoe

Post Edited (ViaJustJoe) : 1/14/2016 1:59:17 PM (GMT-7)

Lynnwood said...
Are you eating well? Clean (non-processed) proteins, vegetables, fruits? A diet of sugar and carbs can lead to lethargy, and it's a hard, hard habit to break.

Also, have you had an ANA done to look for auto-immune diseases?

Yes, I do eat healthy. I make sure to eat fruits, vegetables, and protein. I make sure to shop at stores like Whole Foods.

I have been checked for ANA's, which did come up positive, but when I went to see a Rheumatologist, when they ran more specific tests, there wasn't any specific results.

Post Edited (ViaJustJoe) : 12/3/2015 2:05:32 PM (GMT-7)

ANA is just a marker, that says, "Look further, there might be something here." Doesn't even mean there IS anything there.

You might want to read this on Lupus symptoms (www.lupus.org/answers/entry/common-symptoms-of-lupus), and if you feel there is some sort of overlap, go back to a (different?) rheumy and ask if you can do a trial of plaquenil or prednisone.

(I have no opinion on whether what's going on with you is auto-immune or not, just wanted to mention it as something to check out.)

Besides Lupus, another disease known for "brain fog" is fibromyalgia. Might want to read about that as well.

rocckyd said...
The problem with the ANA test is that is people it can come up positive, but without clinical symptoms, they write it off. If rheumatological symptoms occur, then it's taken into account. If you look at my signature, I have a lot of autoimmune stuff, and to me(not a Dr by any means) it seems like something else.

You have a TON going on. I go to a research hospital, 3hrs away, because I also have a ton of stuff going on. They are trained to dig deeper and find something that may be out of the ordinary.

Is there a larger facility near you? If not, maybe you could travel to one for the initial appointments, and hopefully your local Drs would work with them.

Regardless of what you end up doing, I hope you feel better soon.

I'll have to look into that. I just switched doctors because my GP didn't take me seriously, so I decided to go to another doctor. I've never heard of a research hospital, but I'll look into it. Thanks for your help.

The research part is because they usually are affiliated with a large university med school. For example, I have local docs, but they kicked me down to Duke. My local crew will follow the plan developed by my Duke med team. I go back and forth about once a month. If you and your Drs feel you have exhausted all resources where you currently live, a referral may help. I wouldn't worry about the distance of the initial drive, in most cases once a diagnosis is made, your local docs can take it from there.

Depression can also cause many of those symptoms as well. It's a round and round cycle. Your initial symptoms begin, which make you feel like dirt, which make you feel depressed, which makes you feel like dirt….you look for anyway to get off the crazy merry-go-round.

You will find many people on this board who are also in the process of finding a diagnosis. It's very hard to get any sort of symptom management without something stamped on your chart.

I'm wondering if you've had a complete metabolic panel done? Checking all of the hormones? It's so difficult when WE know something is wrong, but the ones we turn to, to find out WHAT it is can't seem to figure it out!

Going to a "teaching hospital" is a great idea! If you've ever watched the t.v. show "House", it's sort of like that (but not all figured out in one hour! ha ha).

Please let us know what the MRI showed, or didn't show! Keep coming and posting, it helps.

straydog:

I was unaware about the charge per letter, I will make sure not to use the quotation from now on. I appreciate your input. I have seen so many specialists, and doctors who haven't given any answers. At this point, I can tell they are just guessing. My old GP just kept telling me that there was nothing wrong with me, but as I kept pushing and found out that I had sinus issues, and chronically infected tonsils (both of which I had pretty major surgeries for), I figured it was time to switch Doctors. Unfortunately, this caused me to have to start over with a new Doctor, but it's been worth it. I think it'd be a good idea to go to a research/teaching hospital & to keep doing my own research online. Also, is there anywhere where I could "donate" to the forum? So far, it's been really helpful with getting input.

pitmom:

I have had all those labs done, and some stuff came up in the "below average" range, but nothing that my doctors thought was that important. On my CBC's, my hemoglobin level has been slightly dropping, it was in the high 13's, and now is 12.7. It has been really difficult, because I know that there is something going on, but can't get it figured out. Also, I have watched "House" and I understand it wouldn't be an hour, but if I can get a doctor or someone who is willing dig in, that would be awesome. I'll let you know what comes out on the MRI, my appointment is next week!

MtnGrlNC:

Thanks, I will look into it!

Rocckyd:

I'll definitely look into the research hospital. I have definitely exhausted most, if not all, local resources. I'll talk to my doctor and see if I can get a referral.

Joey, absolutely no problem on using the quote feature, being new you had no idea lol. Just so you know donations are very much appreciated, however, it is not a requirement to become a member. The owner of HW also has health issues like everyone else. His purpose of starting HW was for people with an illness to have a safe place to go & meet others with health issues. Many of the members in our forum are disabled & living on a very limited income, some with no income. We do have some annoying advertisements to deal with but these help defray some of the cost to keep this site. To donate look towards the top on the left, you will see Donate.

If you will look in CP101 at the top, I believe there is a list of teaching hospitals in there if I remember right. Maybe you can look to see if something is close to you. Take care.

Not to hijack your thread, just to help better inform As CPers we need to understand the therapies we considering and especially to watch our pocketbooks when non-scientific methods are being considered.
SCIO and other bioresonance therapies are available in the US. Please consult your Dr. if you are considering such methods.

From Wikipedia:

Bioresonance therapy (including SCIO therapy) is a pseudoscientific medical concept in which it is proposed that electromagnetic waves can be used to diagnose and treat human illness.

Bioresonance therapy was invented in Germany in 1977 by Franz Morell, akin to the E-Meter used by Scientology, which the bioresonance creators sought to improve; Franz Morell had links with Scientology.

Keep pushing for a dx, find a good RA doctor and ask specifically for a Vectra DA testing as this will show how bad you RA is, since you had a positive Ana you need to keep on with that and ask for mri's of hands and feet..I had my RA show up on a hand mri in 2009...all my bloodwork is clean dx sero negative RA you can look into this further...find a RA doctor that will listen to you