Thursday, July 31, 2014

Next steps?

I've been to the rheumatologist. We're still waiting on test results, but the doc didn't think it would be likely we would find anything.

Nuerology appointment in November.

In the meantime, I'm feeling a bit fed up with seeking answers - again... and still without any hope for an effective treatment.  Funny thing. Even with conditions with no cure - they usually at least have some ideas of treatments to help manage symptoms. I can have the same symptoms - but because I'm undiagnosed - then I'm not eligible for the same treatments.

They did suggest getting a lump biopsied to see if we can figure out what the lumps are.  Not the end of the world if we do that. It's just that my issues are bigger than the lumps themselves.


So, my current plan is to restart the MTHFR treatments... slowly and surely. See if I can figure out if things worsen or improve.

Thursday, July 24, 2014

Another health crash - trying to tough it out

About six weeks ago, my right bicep started cramping.... I had a superficial (very minor) blood clot in that arm after my gall bladder surgery a few years ago - which never went away. I figured I should double-check to see if the bump is still there and still the same size. It was. BUT about a quarter of an inch away was a second bump.

My first thought that struck me was that I might have developed a second blood clot. If I had thought it was a DVT - I would have gone straight to the ER. But it felt just like the other bump I had... which being a minor superficial blood clot and I could literally feel the lump right under my skin.... I decided to take some aspirin, use some warm compresses and take a wait and see approach.

WIthin three days, I suddenly had a couple more bumps under the skin on my left bicep. Hmmmm... if these really are blood clots, that would be a sign of something quite wrong. But, they are highly unlikely to be blood clots in two different arms spontaneously showing up. So, I called the doctor. A couple of trips to get ultrasounds and the US doc claims they are unlikely to be blood clots, nor cysts... nor anything that they can recognize as abnormal tissue.

Next step was dermatology. At this point I was up to 14 lumps - all in my upper arms. But now I'm getting pain in my legs, torso, neck, etc, even though the bumps are localized primarily in my arms.  Dermatologist went with angiolipomas... which are painful (angio)  benign lumps (lipomas). If I was lucky, they would hurt for about six to ten months, not respond to anything, or I could have surgery to remove them.  Per him, since there would have to be about eight incisions, he wanted me to go to a general surgeon for the surgery. Per the General Surgeon I saw next, they were NOT even remotely possibly angiolipomas and part of the reason the dermatologist didn't offer to do the surgery is that he wouldn't want to get blamed for operating and not resolving the problem.

Went back to my regular doctor and now we are waiting on rheumatology appointment. The lumps are showing up now in my arms, legs, trunk, and underarms. The pain though can appear anywhere. There's a general whole-body ache that preceeded finding bumps in each area as it spread, so did the bumps, only now it's whole body - the bumps aren't quite whole-body yet... close, but not lower legs, nothing in my feet or hands... sigh. But, even worse... there's a shooting pain that will hit in a variety of spots. It flares hard and fast and almost strong enough to cry out, within 20 minutes it tends to fade back to the aching. Suggestion has been made that this is nuerological pain. I don't know, I just know that it's hard to cope with it. None of the recommended pain killers have provided any relief.

In the meantime, I've learned the following.

1. The lumps don't stay. I can count 14 at one point, the next morning there might be 8, eight hours later there might be 24, the following morning 6. Sometimes they stay.... there's almost always about 6-10 lumps in my arms consistently... but if I mark them with permanent marker - some of them will be in the same place the next day, others will have gone, but new ones (or they moved) will appear a quarter inch or so away from the mark.

2. The more I try to do physically, the worst the pain gets. Even knitting (sob) triggers more pain in my arms.

3. The ONLY thing that seems to help is application of heat. - So I'm spending my days and nights in bed with a heating pad being moved to the next spot that has the worst pain... with a few breaks to take long baths (and I hate baths) but the heat application makes it easier for me to sleep.

The doctor did put me back on coumadin, although honestly it's highly unlikely that these are truly blood clots. 1) they didn't show up on US 2) they move/dissolve way too quickly 3) if they are truly moving - then I would have more serious issues with breathing by this point.

But blood thinners will at least protect me from my blood clotting disorder while I remain bedridden to deal.

I'm on medical leave from work right now, but all I can hope for is that the rheumatologist might have a treatment suggestion and/or my condition goes through another change and I can experience some remission. I find that it makes me feel very defeated.

I stopped ALL methylation treatments as well as temporarily stopping the thyroid treatments. I stopped adding a ton of salt to all my dishes. I've checked with the MTHFR specialist to see if there's anything obviously outstanding that might explain my new symptoms based on what I'm doing... but nothing came to mind. All the doctors I've spoken to, with the exception of the one who I no longer trust who suggested angiolipomas... have repeatedly told me that my symptoms are exceptionally uncommon and make no sense.

I question whether or not my 'ramping' up my methylation process after it having been in such bad shape my whole life has caused an influx of something I'm having a systematic reaction to. If so, backing off of the methylation support should allow my symptoms to improve (nothing yet, but not quite ready to give up on the experiement). If the symptoms do back off and restarting the process makes it worse - then I know to dig deeper into that process.

So, in the meantime, I'm mostly doing a wait and see approach.

Monday, June 16, 2014

Father's day

My stepfather and I have never been close. He had married an older woman who had three teenagers and a younger daughter. They took a little while to become a 'family', but we did. And even more so, when he had a son (my youngest brother) with her. But he wasn't quite ready to be 'dad' when I was little. Less so, once I became a teenage girl with authority issues. Even less ready to become a grandfather when my eldest was born.

We get along. We're just not 'close'.

Since my own birth father had died when I was quite young... I had been super close to him, but I never had that connection again with anyone after that. It was all about my mom when I was growing up.

And since my eldest son's father hasn't been a part of his life (well, ever), he never really experienced having a dad around either.

Admittedly, I was married for several years in the hopes of obtaining a father for my son. But come to find out he didn't really want to be a dad to my son. And it wasn't too much longer after I realized that before I realized that I didn't need him in my life after all.

And my other son's father and I were only dating when I conceived and we had split up before I'd known we'd conceived.

Well... father's day has always been a bit 'odd'. It doesn't quite fit our family. My youngest son usually gets to spend Father's day weekend with his dad... which at least gives me a little break. But, it's been hard to call it a family event or holiday.

I did start teasing my eldest son about father's day when he was a teenager. It's not like he had anyone in his life besides myself and my mother. And, I figured I deserved some due for being the one to toss a softball or kick the soccer ball with him. I was the one who took him to baseball games. I was the one who taught him to mow the lawn and grill out on the grill. I taught him how to hike, camp and fish- though I never could quite bring myself to clean them (catch & release works better when you aren't a big fish eater - lol). I was the one helping him with his cub scout activities.

He pretty much ignored all my attempts at getting some recognition on father's day... until he became a father himself.

Now, I get flowers and dinner for Mother's day. And father's day? Comes with a huge thank you and a conversation about how much he appreciates what I have done and continue to do to support him.

He's turning into a pretty great father on his own. And I think it's pretty cool that once a boy becomes a man and understands what it really takes to be a man? He realizes that some of that came from his mother... and that it is ok.

Sunday, June 08, 2014

Need to vent about doctors

I have a history of blood clots.

I have a genetic condition that makes me have a high risk of future clots.

I have had one PE and one superficial clot. A superficial clot is generally considered no worse than a bruise. It's minor, usually caused by iv's or injury or otherwise... and they are not usually considered dangerous, nor are they treated with any type of medication.

However, sometimes, if left untreated (about 10% of the time, they can lead to DVTs.

If I get a DVT, it will be considered my second clotting event and I'll be stuck on blood thinners the rest of my life.  (superficial clots don't count as a true clotting event).

My first superficial clot came along after surgery in the arm about an inch away from my iv site. It's pretty common to get them after an IV... and as it was I was being put on blood thinners for two weeks as a preventative treatment after surgery - so within three to four days, the clot started to feel better and to shrink. It shrunk down to about the size of a pea... and all was right in my world.

However, last Tuesday, my arm got sore again - in the same place as my previous superficial clot. A small patch of the area on my bicep was red, swollen and warm to the touch. When I poked and prodded I found a little pea sized lump... only it wasn't in the original location. Sure enough, when I poked some more, I found two pea sized lumps - the old one and a new one. Since I knew they were low risk and didn't necessitate immediate medical treatment - and that the treatment (warm compresses and aspirin) is low risk if I'm wrong... I just started the treatment on my own.

Two days later, I had some pain in my left upper arm... found another itty bitty lump. Hmmm.... that's not good. But I'd only just started taking the aspirin a day or so before... so I figured it might not have had a chance to take effect yet.

Third day... and the lumps in my right arm were both larger than they used to be. Which means that my old clot has gotten bigger as had the second, newer clot. They went from pea sized to marble sized.

I broke down and did something I didn't want to do - but I called the doctor to ask if they could see me. Only they wanted me to go straight to the emergency room. I got a little pissy and grumpy and stubborn. I didn't want to waste the time to go to the ER... I knew that these are not life threatening, in and of themselves... and that if I could get treatment (true blood thinners) that they wouldn't get any worse and therefor couldn't reach the point of being life threatening. So, I didn't go to the ER on Friday.

I went home and pouted instead.

Saturday morning I woke up and it was hard to feel the lumps in my right bicep because the whole area is much more inflamed. I think I need a new doctor, but on Satuday I realized that I wasn't going to get diagnosed and treated any time soon if I didn't go anywhere.

I can't find a new doctor over the weekend. And a walk in clinic that doesn't know me isn't going to do anything except send me to the emergency room ... sigh.

So, I broke down and went to the emergency room on Saturday. TOTAL WASTE OF TIME. They concurred that I do not have dvt's (deep vein thrombosis) and that my life is not in danger at this time. And they recommended I talk to my doctor. Which is all I wanted to do in the first place.


The two lumps in my right arm are now around 2" long... the bump in my left arm is about the size of a marble... and now I have a new pea-sized lump in my lower left arm.

I may not be a doctor.

I may not be thoroughly familiar with everything about how the body works.

But I know a LOT more about my blood clotting disorder than a lot of doctors.

Basically, the body needs the clotting mechanism to deal with injuries. And when you are hurt or cut, you need blood clotting to stop the bleeding.

But sometimes, the trigger that initiates the blood clotting 'process' isn't obvious. And with my disorder, once it's turned on... the body has a hard time stopping it from building clots even where they aren't needed.

When you develop multiple superficial clots in different locations without any preceding injury, it's evidence that the clotting mechanism has been turned on.

I've taken aspirin, which is the recommended treatment... and it hasn't phased the process.

Per the studies I've read, aspirin is very effective in helping folks with heart conditions and with arterial clotting risk in preventing platelets from sticking together. Veinous clotting disorders, on the other hand... are created by fibrin sticking together.  Aspirin has not been successfully proven to be effective with veinous clotting disorders. I have a veinous clotting disorder.

And aspirin has not been an effective treatment.

This isn't rocket science. It only makes sense that unless I start taking medicine proven to be effective in preventing veinous clots from forming... it will only be a matter of time before I'll start having dvt's or another PE which would be life threatening.

I am fully aware that the ER did their job. They made sure that I'm not on my death bed. But now I've been laying in bed for two days and getting worse. I HATE the idea of waiting to get worse instead of attempting to do something to get a handle on my condition. While it wouldn't be in the ER doctor's job description... it would have taken ONE prescription of a drug that can't be abused to have put me into a safer situation. It would have taken thinking outside the box and connecting the dots that a person with a clotting condition actively building clots (no matter whether they form outside the deep veins or inside of them) is probably going to need treatment to stop the process.

SIGH. I am really sick and tired of trying to get common sense medical treatment and getting brushed off. It's my life they are putting at risk because they don't know enough to connect the dots and see where this is heading.

Wednesday, May 28, 2014

MTHFR, methylFolate and gout?! sigh

Chemistry was never a strong suit of mine. I took Geology in college for my 'science' credit.

Bio-chemistry is still far over my head.

But, now I want to dig further.

For folks with MTHFR taking methylfolate, there is a general consensus that sometimes high purine diet helps - increasing the beef, and other high purine value foods.

I haven't done that. Not hat I don't enjoy a rare, good steak... but it is normal for me to eat lots of soups and low-beef foods. High vegies, high fruits, moderate protein.

AND based on basic googling research, it appears that MTHFR impacts methylation cycle and can impact the bodies ability to process purine... which can convert to uric acid. Too much uric acid can result in gout flare ups.

Gout is exceptionally rare among patients having trouble with MTHFR impacting their health.

But, the more I think about it ... what I'm experiencing does make some sense.

If with MTHFR, the body isn't breaking down purine well... then it's not producing high amounts of uric acid.

Before I started treating MTHFR I never experienced any symptoms of gout.

Once I started taking methylfolate I had a couple of episodes with gout pain - but didn't know what it was. My big toe would just hurt like the dickens and I would brush it off thinking I was so clumsy I didn't even remember how I had hurt it. But at the point of starting to take methylfolate - I was starting to convert more purine into more uric acid because I was 'fixing' the process that does that conversion by supporting it.

Now, after almost a year of HEAVY dosing on methylfolate, I'm starting to have multiple symptoms of gout and multiple flare ups and finally have a diagnosis.

Here's the rub... I finally find something that helps me with ALL my other health issues - and it brings up a brand, new condition?!  I don't want to go back where I was... but I do need to figure out a way to manage things such as to cut back the flares.

If you have gout and are reading this, so far, my BEST treatment I'm getting is taking doses of the alkaline mineral A-C Carmabide. It's not that expensive, it cuts the pain of the flare VERY quickly and within a couple of days the flare is gone. But, I'd really like to figure out what to modify in my diet, and or supplement support to help reduce flares. I tend to forget my B12 supplement since it's sublingual and should be taken apart from my other supplements... more research is needed, but at least I'm finally to the point where some of this stuff is starting to make sense.

Friday, May 09, 2014

Set backs, lessons being learned and always starting over

I've been having health issues lately as a result of a car accident. Which won't get discussed here as this is a public forum and I don't know where it's going right now.


I had another gout flare up... well, I think it might be gout. Doctor tells me he thinks it's gout. But I've never gotten tested for it yet. I waited to take the supplement that really helps it while I reached out to my doctor as I  was thinking that with my next flare up he had planned on getting me tested for it. Only he didn't request any testing, just prescribed an N-SAID... which the supplement I'm taking works better than that... so I didn't bother to get it filled.

I'm taking A-C carbamide... and within four hours of the first dose, the pain is knocked in half... and within a day the pain is down to a dull ache and gone completely within four days.

The first symptoms I noticed and followed up on was tiny brown 'specks' in my urine - which didn't cause any pain. It's happened twice and I reached out to the doctor and his first thought was 'gout'. (Mine was kidney stones, I'm not sure this is better).

I didn't think about what 'gout' means to me, just that my 25 yr old son has a doctor telling him that he thinks he has gout as well (oh, boy!).  So, now we both feel like fat, old men (and aren't).

Within two days my big toe started to REALLY hurt. And while I've had severe pain in my big toe before, this was probably the first time in a long time that I KNEW I hadn't stepped on something or done something to it. I think in the past, I had always assumed that I had hurt it.

It didn't take long on google to tie together the big toe pain and the possibility of gout.  Now, about three months later the gout pain is back. It's bad enough that I end up limping. And I'm a little ticked that I didn't start taking supplements right away (worried that if I address the uric acid too quickly that it wouldn't work well if we were going to get tested.

I think I need to focus on diet next because I'd far rather work on the prevention side of things over just managing the flare ups... and I'll find out if the A-C carbamide could be used as prevention vs. reaction.... but diet first, if at all possible. But of course, between it and MTHFR and post-gall-bladder and post-dentures issues... my diet is already quite affected. We'll see what I can do to improve things though...

Interesting enough - one of the causes of gout is improper digestion... wonder if that ties into MTHFR or what all.... it does tend to run in the family and I might have just managed to past on a host of nasty genes.


So, lo and behold I ran out of my methylfolate supplements... went online and (as I usually do), I found the last order and placed an order after verifying that it's the same version of it that I had gotten in the past. I don't know how long I've been off... But I go through a TON of these pills and I'm pretty certain over the past year I've always ordered the same item because I always use order history to find the item I need to replace. ONLY... one year ago it was 5 mg a capsule (like 8000% of RDA)... and I happened to glance at it the other week to realize it's 10 mg a capsule... and I was taking double the already exceptionally high dosage.

I'm wondering if this is part of why I've struggled a little with taking the supplements. I'd been out for a couple of weeks as it was. So it felt like time to take a fresh look at the supplements I'm taking and working on making sure they all work for me. I took a week-long time out from all supplements.

Lo and behold (again) no diahrrea. I added one supplement at a time and again... diahrrea back. I can't take the Opticleanse without it coming back. And I think I've finally eliminated enough of my dietary triggers that it became easier to prove what was causing it.  So, now I need to reach out to the doctor to find an alternative... which might end up being dozens of pills to get the nutrients packed into it individually... but I'm at a point in my life where the chronic diahrrea (almost 5 years of it with over 5 days out of every 7 having diahrrea)... that it's just not acceptable to deal with it any longer.

So, right now I'm down to the following:

First thing in the monring, empty stomach - Armour - Thyroid medicine

Within an hour - with food
10mg alternated with 20 mg of Methylfolate (instead of 15 mg every day)

About an hour after lunch and an hour before my afternoon 'meal'

1000 mg of liposomal Vit C

About an hour after my afternoon 'meal'
1 mg of methyl B12 (want to go to 2 mg - maybe after my dinner?)

2 capsules up to 4 x per day of A-C carbamide as needed
Ibuprofen as needed

Slowly, but surely, I'm crawling back out of the dark again.

Saturday, March 29, 2014

Trouble sleeping

Things are not going all that well around here.

Two weeks ago I got rear ended on the interstate - both cars totalled. While I did walk away (and thank all that is good in the world that my 10 yr old is fine)... I still managed to get whiplash out of the deal.

I'm not going to go into the details, because it feels like the guy who hit me is maybe trying to lay blame elsewhere and I'm not sure this won't all end up in court if things go poorly.

But I will say, whiplash sucks. My head has hurt for 14 days straight. My neck? AGONY repeatedly. Ice does help, but you have to take breaks. I have some shooting pains in my shoulder that occasionally migrate down the right side of my back... mostly I think from stiff/tight muscles who don't like the pain I'm in. Lots of ibuprofen and heating pads on those muscles. Lots of trip to the chiropractor and he's helping the muscles remember that being loose instead of tight is less pain. The treatments are helping and with each treatment I feel a slight improvement. But there's A LONG road ahead of me and every step feels like it's just not going far enough, fast enough.

My first big mistake after the accident? I had already scheduled a driving trip to Colorado. OMG. BIG MISTAKE. DO NOT... I REPEAT NEVER, EVER take a 10 hour drive within four days of being rear ended. I thought I was in pain before we left. Pain meds just don't touch it (well, the ones I can take anyway... being allergic to strong pain meds is a big pain).

Second big mostake? Catching a head cold. Every sneeze, every cough is pretty much followed up with a moan or a cry or a yell. I've been brought to tears multiple times today over sneezing.

Now, I've got two days without having to work in front of me, hello weekend, we love you.

But then I have to go to MN for work and am so NOT looking forward into getting into a car for a road trip again. I'm packing a neck pillow, some one-time-use ice packs and am going to curl up into a ball in the corner of the car and try not to weep the whole drive. As if my life wasn't stressful enough before.

It's always something, and lately? it's been beating the crap out of me.