Wednesday, December 16, 2009

Procrastination (also known as why it is hard to post to your own blog)

I’d like to go into a little more detail on why I think it is hard to come up with this to post about on this blog.  I started this in order to provide myself a place to vent about a disease that I know next to nothing about, that I’d really like to just whine about (why me?), and my thought was that by having a place to put words down I could process my thoughts and somehow make it all make sense.

I’m finding that no matter how much I process, or how many words are posted, I really don’t think any of it will ever make sense.

I have been taking time reading others blogs.  I’ve found several that I really enjoy.  That in and of itself can take days or hours or weeks of wasted(?) time.  Actually I really don’t think of it as a waste.  I have found several blogs that I really like, I especially like those with a sarcastic wit and/or a wicked sense of humor.  I never have really been able to take the sugary sweet saccharine people with “Miss Suzy Sunshine” type attitudes, so while I’m currently reading anything and everything I can find, those are the ones that I most likely won’t bookmark or return to with any frequency.  It’s one thing to be straightforward and truthful and be “nice” without trying to sugar coat everything.  Lots of time in life there is no silver lining.  And that light at the end of the tunnel – it is probably the freight train to hell barreling its way right toward you.  But that is my pessimistic outlook for you.  I often say I’m an optimist – I’m positive that something will go wrong.

So anyway, there are a handful of blogs that I have found and have spent the past few weeks going back in time to read from the beginning.  I feel like a voyeur.  By reading all these thoughts and comments and responses to comments posted on these people’s blogs, I now feel I have gotten to know them.  They almost feel like “friends” to me.  There are one or two that seem to have the same type sense of humor I do (a little off), there are some that seem genuinely nice.  Several I think I would feel honored to have as a real friend.  I’ve been a member of a couple online communities before, but those are different.  Those, I’ve gotten to know people by posting and reading posts and there has been a two way exchange of thoughts and ideas.  I’ve gotten to know them, while they have also gotten to know me.  Some of those I have later met in real life and are now considered my friends.  This blog thing is totally different.  I have read all these things that now make it seem like I know them.  But these people don’t know me from the man in the moon.  In a way, I almost feel a little like I am an outsider that came to the party late.  Some of the blogs I have enjoyed the most seem to have either started around the same time, and/or the writers have since gotten to know each other, and will comment on each other’s blogs.  Making it part of a community.  A community that I just moved into and don’t know a soul.  Sort of like when I was back in school and had moved to a new town – I always hated trying to make new friends and trying to “fit in.”  That is just part of my introverted personality.  I’m fine once I get to know people.  It is just a matter of trying to figure out how to break the ice and meet them.  I’ve always managed to find friends and have many good ones.  I just have never really fit into any of the clich├ęs and always do better in groups of small numbers or one on one.  I’m not sure that is such a bad thing.

Another thing I’ve noticed is that most of the MS blogs are all being written by bloggers that have a more accelerated form of MS.  That might be an oversimplification, but it seems that a lot of you have either pretty serious health issues, or pretty serious relapses that you deal with.  I don’t know yet at this point what I have.  Since I was just diagnosed, I haven’t had a relapse at this point.  I have some things I think I could point to in the past that might or might not have been caused by MS, but nothing concrete.  The symptoms that led to me going to the Dr’s having the MRI’s and eventually getting the diagnosis started back in July.  Some of them have cleared but I’m definitely not 100%.  I’m not back to normal – what is normal any way?  According to my Neurologist, I am better the beginning of Dec than I was back in September, and better still than I was in October.  So I guess I’m continuing to slowly slowly slowly regenerate those nerves.  So while that is annoying to me, and seems to be a long painful process, I’m not sure it in anyway compares to what some others have dealt with or will deal with.  I read something on someone’s blog back when they were first starting their blog (forgive me as I paraphrase/plagiarize a thought since I can’t possibly remember where I read it) that they were sick and tired of reading about people that didn’t have it as bad as them.  About people that were showing improvement and/or the meds (crabs etc) were working to keep things under control.  Well, I guess we all are looking for someone or something that makes us feel like we aren’t so different ourselves.  It seems to me that most of the blogs are by people that are more like this person than they are like me – I really haven’t read that many (any?) by people that seem to feel that they have things under control, that they are continuing to work.  I guess I want to know that “it’s all going to be ok”  that things don’t have to keep getting worse, and that sometimes things might even get better.  However, I’m not sure that is how things work.

So, anyway… for all of you that I have been reading and lurking on your pages and now feel like I have gotten to know you, thanks for writing.  Thanks for sharing.  Thanks for letting me peak in, even if it is from the outside in through a window.  I never thought I’d be a peeping tom or a voyeur, so I think I’d rather think of myself as just a Lurker.  I will post someday – if I ever feel I have something worthy enough to say.  I doubt any of you are reading this – but if you are, thanks for stopping by.  I welcome any feedback or thoughts whatever they may be.

Catch up (ketchup, catsup)

Note - thought I might need to clarify the heading.  I was just using a play on words with the catchup, catsup and ketchup.  I never did really get what the difference between ketchup and catsup is - something to do with one being much sweeter?


I don't know how others do this; keep up with their blogs on a daily or even weekly basis. I have lots of thoughts, and thought I would be able to find 10-15 minutes here or there to do an update. But that doesn't appear to be working out.

First of all work seems to be the biggest obstacle getting in the way. Damn the luck, I do have to focus on that since it does pay the bills and especially pay the mortgage. We couldn't make it without my income without making lots of drastic changes. And while there are some days that I really do wish I could retire early and not drag my sorry butt into work, I know that I am fortunate enough that I a) have a decent job, and b) still have the ability to do it.

Since I have posted in a while I'm just going to hit some of the high-light’s, or low life’s, depending the perspective.

1. The biking is temporarily on hold - cold weather has crept in. If we do have some decent (no rain/sleet/snow, dry days we might bundle up and try to head out on a Sat or Sun. I really like the bike and am looking forward to when it does get warmer and we can get out more.

2. The bruising seems to have cleared up somewhat, only change is that I drastically dropped the amount of Advil I was taking. Which now my knees bother me some, especially the right - which has the arthritis behind the kneecap. But I don't know if that is due to the Advil or not. That knee basically never stopped hurting even when I did the recent round of Synvisc shots. The other knee isn't so bad other than usually aches and pains especially on cold damp days.

3. The thyroid thing - don't remember if I mentioned that, but after the round of biopsies, the results were inconclusive so the Dr now just wants to wait and monitor for the next 9 months - I go back next Sept to have another ultrasound and see if the nodes are growing.

Wednesday, November 18, 2009

Black and blue

I've noticed over the last couple weeks that I seem to be extremely prone to dark purple black or blue bruises. All over my legs (the worst) some on my arms and a few on my torso. They look terrible. I know some of them are because I am such a clutz but that doesn't explain the extent or the depth of color. I searched a little online and see some people believe that bruising is related to their ms. Others think it is related to there dmd of choice.

Perhaps. The bruising certainly is beyond what is normal for me. But M helped me remember that bruising was what started this summers roller coaster of dr visits. She's right way back before I saw the dr and had the first blood workup that said I was a diabetic in training, I was bruising more easily. Went to dr on theory that the dr could find a cause and get it fixed. Guess it is now full circle. And I still bruise and have no idea why.

For some reason it did seem to clear up over the intervining months. And now it is back and worse than before. Black and dark purple is the new me!!!

Tuesday, November 17, 2009

Diet, Bikes and exercise

This summer I was full of good intentions.  I joined weight watchers and started counting points with my daughter J (24).  She did great, the first week I think she lost 10lb.  I say it is easier when you are younger.  I started out pretty good, I lost about 5 lb the first week, and gained 1 or 2 back then lost again, and then it seemed like the bottom started dropping out of my world.  First I found out that my blood sugar levels are elevated.  Need to watch my diet and exercise more.  It seems my fasting blood sugar is hovering around 130 which is high.  My A1C is 6.0 +/- is not so bad.  So basically I need to start watching what I eat.  Went to some diabetes education and nutrition classes.  Learned a lot so that was good.  But it seemed like I kept going to the Dr and hearing things I didn't want to hear - and I rebelled as a result.  So I sort of was a weight watcher drop out and went on and ate unhealthy stuff - part of which I suppose was a poor poor pity me approach to all the news I was getting.  Strangely enough when I had the blood tests 3 months after eating even worse than I was the 3 months prior (when i was "watching" what I ate), my fasting blood glucose was down a couple points and my A1C dropped about .3 points.  During the diabetes classes I had my blood sugar tested (in the afternoon not long after eating a not that healthy lunch and a snack of fruit) and my blood glucose was only 86.  Apparently the thought now is that my liver is producing glucose while I sleep and then my body doesn't know what to do with it.

So anyway, fast forward a couple months, now I've been diagnosed with MS.  My neurologist tells me I need to watch my diet and need to exercise and be more healthy.  My regular Dr tells me I need to watch my diet and exercise to watch that my blood sugar doesn't get out of control.  I'm seeing a trend here.  Everyone wants me to suddenly become more healthy.  Actually so do I.  I have pretty bad Osteoarthritis (bone on bone) in both my knees.  My orthopedic surgeon says I should lose some weight and it would help my knees. Personally I know that when I am exercising and am at least a few pounds lighter then I feel better.  So its time to do something about all this again.  So my goal now is to get back to watching what I eat.  I like food so eliminating it all is not an option, I need to do something that I can live with long term not a quick fix.  So I need to start watching portion sizes - that I believe is the big thing.  And go for more of the healthy stuff and limit the not so healthy.    It won't be an over night change but I think I am ready to tackle this again.  I was doing pretty good before I started finding out about all these other health issues.

The other part of this is exercise.  M and I went bike shopping on Saturday.  Learned about what kind of bikes would work for what we wanted to do.  And unfortunately we could only find one such bike in stock, so she bought a new bike.  On Sunday we went with W and took the dog to a local place with bike/walking paths and M and I took turns with the bike, and the dog.  We all enjoyed being out and moving around.  The weather was great.  I ended up doing about 6.5 miles on the bike - not bad for not having been on one for several years.  Now I'm all revved up to get my own bike.  I ordered it yesterday, they say they will have it by the end of the week for me to use it next weekend.  This is going to be a good thing.  The biking felt great.  My knees were a little stiff yesterday, but actually the exercise is good for the arthritis.  The only other thing I noticed was that I need to bring more water - I was very thirsty and finished my bottle and part of W's.  I have trouble with hills if they are very steep, still getting the hang of shifting down and I seem to run out of steam.  Also seems to relate to the dry mouth feeling and needing more water.

I think the biking thing is going to be a great activity for all of us.  W loves it, he's been biking for several years and was very into it in Colorado (they are more geared for biking and have more of the bike paths on the major roads etc) than we are in Pennsylvania.  I think he's glad to see us getting into not just so that he has some one to go biking with but also because he thinks we both need to get more active. (we do.)

SO... by the end of the week I should have my own new bike, and I'm pretty excited about that!!!

Monday, November 16, 2009

Am I alone?

I know that it hasn't been that long since I was diagnosed or that long since I've started on MS meds.  I find myself thinking and wondering if various symptoms I have are MS related or just unrelated stuff that I've had for some time.  I've read a lot online, and realize a lot of what you find online has to be taken with a grain of salt.  But I do wonder about what's next or what to expect.  From what I read, I'm lucky.  I'm not seriously impacted, I have some annoying symptoms but I  can live with that.  From the way my Dr talks that may be all i have for a long long time.  He seems to think that today's newly diagnosed patients aren't as apt to suffer all the severe symptoms and disabilities as those that have had the disease for a long time, and/or haven't taken any of the meds to prevent things from getting worse.  yet, I don't find anyone like me online.  maybe that is because the ones that are writing blogs and sharing their stories have more to say because they are more affected.  maybe the people like me are busy living their lives and working and don't have the time or energy to share their stories.

I understand that no two people have all the exact same symptoms - this is a very varied disease that impacts each one of us differently.  So for now I just count myself lucky.  I don't seem to be bothered by extreme heat - at least not completely.  We have a hot tub - that we just put in within the past 3 years.  I love it.  It is great especially for my arthritic knees.  But now I see that so many MS patients can't tolerate hot tubs etc.  that it can flare up symptoms etc.

The only time the heat bothers me is that when it is a very humid day i feel very lethargic.  Also there are times when i "over-heat" and just suddenly get drenched with sweat.  I always figured that was a hormonal thing.  And maybe it is.

I've talked to a couple of "peers" - people that also have MS that take the same meds I do, and have found that very helpful, but they have had MS for at least 10 years or more.  I have officially had it only a month or two.  So they aren't like me... which comes back to the "am I alone?"

Friday, November 13, 2009

The first post - the diagnosis and where it all began (in the middle)

A blank blog is like a blank canvas, or a blank page, where do you start? Could start at the beginning, but then you have to figure out where the beginning was and all I'm really sure of is that I'm not really sure of anything at this point.

The purpose of this blog is to have a place to post thoughts and feelings, a place to start in the middle (now) and try to go back to figure out what came before and what is supposed to come next.  I'm not writing for anyone else, this is just for me.  If it ends up being something that other find and/or get some benefit then it will have served two purposes.

Who am I?  I'm a 46 yr old woman, single but in a long term relationship.  I was recently diagnosed with MS.  Multiple Sclerosis.  That's something I really didn't know that much about or think much about until 2 months ago.  Apparently that is unusual, a lot of people with MS spend years with "maybe MS" and no definite diagnosis.  So I'm glad it didn't drag on, but that means it was also kind of sudden, a lot to absorb.

But it has been a whirlwind of medical discoveries this year (2009).  First in July, met with my family doctor and had routine blood work and was told that my Blood Sugar levels are a little high and need to be watched.  My A1C is ok, but the fasting was close to being something to worry about.  As a result I learned a lot about how diet effects your blood sugar and attempted (ok so I like food, especially stuff that isn't that good for you) to eat more healthy.  I learned about how unlike what I thought about diabetes as a kid (my 2nd cousin by marriage had type 1 and had to take insulin) wasn't true.  I remember back then everyone thought you just had to avoid sugar, but could eat most anything else - including all these starchy potatoes and fruits and carbs all of which convert to glucose and no one knew.  Now the key is watching what and how much - portion control is everything.  sugar is ok in moderation and you have to know how much and balance it all out.  Yes, I now know a lot more about how to eat healthy - I just need to actually practice it.

Not long after I got used to the idea that I needed to watch what and how much I ate and eat healthier and watch my glucose levels so as to avoid ending up with type 2 diabetes, I ended up catching a cold/flu that was going around.  I was sick for a couple days into the weekend and missed a day of work then noticed a new symptom over the weekend - bottoms of my feet were numb. Both of them.  Which seemed a little odd, but I was still sick so didn't worry a lot about it.  By Monday it wasn't any better and I decided to call my Dr.  One of my concerns was that about 6 years ago my father had gotten Gilliam Barre from a flu shot. He never fully recovered.  So in my mind I was drawing parallel's - he had a flu shot and got this disease that caused almost complete paralysis, required being airlifted to a hospital across the state and spent days in ICU and then weeks in a rehab hospital to learn to walk again.  (he did re-learn to walk, and went back home, and then had relapses due to kidney infections due to not regaining complete muscle control of all systems, and was in and out of hospital and each hospital stay he lost a little more ground, until he ended up in long term care and never came back home.  So, I had the flu, and my feet were numb... it needed to be checked out.  I really didn't think it was the same thing, but couldn't take any chances.

After the typical round of calls to the Dr office and speaking to nurses and then later finally speaking to the Dr and being told to come in this afternoon (a week and half after the flu and first symptoms), the Dr checked my reflexes talked to me about my symptoms at that point it was my entire feet up to my ankles and no longer just the bottoms.  It wasn't really that they had no feeling, they were "fuzzy" or tingling.  Like electric or static shocks only constant.  Never stopped.  For that matter it is still there.  They checked my reflexes and said mine were brisk, asked if they always were.  Had no clue - what's that mean? still had the cough and head congestion too - but since my "mucus" was clear and I had no fever, I was deemed to be ok.  They also said since my blood sugar level wasn't that elevated nor had it been for any length of time that they didn't think it was neuropathy which apparently is common in diabetics.  So next stop - go see a Neurologist and have a MRI on the way of my lower spine with and without contrast.

That was the second time I've had a MRI of my lower spine but the first time with contrast.  First time was about 3 years ago when I had some sciatic nerve pain and they didn't really find anything.  So had the MRI and the contrast injection without any issues met with the Neurologist the following week.  He does more reflex tests - agrees that my reflexes are brisk, and finds I have the Babinski sign - this means that the big toe flies up when you run your thumb hard along the base of your foot.  This reaction is not normal, the normal response is apparently to curl your toes under, mine definitely fly up.  At this point the numbness or tingling is on up past mid-calf.  I have knee highs on (not literally but imaginary), they feel tight, and tingly.  If you touch my skin especially lightly, I feel it like a shock wave that scatters all across the surface of my skin very irritating.  He also did pin prick tests - I could feel the stick every where.  He did tests with a tuning fork - I could feel the vibrations most places but when he touched the fork to the joint of my big toe, the vibrations mingled with the tingling resonating through my feet and I couldn't even feel it.  He also watched me walk and tested my balance (poor - especially if my eyes were closed).  I'd noticed that myself, if in the shower and closing my eyes, found that i had to have one hand or elbow on the side wall to orient myself so didn't feel like falling.  I liked my Neurologist, which is important.  I need to like my dr's and trust them.  I think mine knows his stuff, and I like how he takes time to explain things and answers questions.  We looked at the lower spine MRI's and he said there was nothing to note on them.  The Dr had explained that my problem wasn't peripheral nerve issue that it was in the central nervous system (CNS), which meant either the spine or the brain, some things not so likely in the brain because it was effecting both feet equally and most brain things are one side or the other.  Lyme was mentioned, and that it was something that was attacking my myelin, or the nerve shealth in the CNS.  He also had mentioned some form of myelitis.  He explained about how the myelin acts as the insulation on the nerves much like insulation on an electric cable keeps the wires from shorting out.  Ok, so know I know what is going on, my nerves are shorting out.  What causes it?  He also talked about how normally they prescribe steroids (high dosage steroids) to help alleviate the symptoms like mine - but that since my blood sugar was already near danger zone, he didn't want to do the steroids since that will sharply raise blood sugar levels.

Next he wanted me to have blood work to eliminate Lyme disease, and scheduled a MRI of my upper spine/neck and brain with and without contrast.  Had the blood test and heard back a few days later that no - I was negative for Lyme.  Went for the MRI but was only able to get it without contrast.  They weren't able to "find" a vein and/or blew out the ones they found and were unable to inject the contrast.  They were only able to turn me into a human pin-cushion and bruise both elbows and the back of my one hand.  Then gave up and decided if the Dr or the Radiologist thought it was necessary they would have to reschedule.  Fun Fun.

Went back to Neurologist to see the results of the brain & upper spine/neck MRI's (without contrast).  Repeated all the reflex and other tests - at this point the numbness/tingling is now mid thigh, sometimes feels like wearing support thigh highs - there is a definite "tightness" and fuzzy feeling, and the tingling and light touches to my skin still causes my skin to crawl and radiates like electricity, but my balance is better, and actually some of the feeling and the "normal" is returning to my feet.  They still feel odd but different and there are places that feel normal.  According to the brain MRI i have lesions in my brain.  He can't tell if they are active (could have with the contrast but not without), and says they are also called Dawson's fingers.  These are also a sign of MS and/or Lyme.  I think this is the first time any mention of MS was brought up - althought that is definitely fits the description of a de-myelating disease.  I'd already tested negative on the blood test for Lyme.  Next step is now to have the spinal tap.  This would definitely eliminate any possibility of Lyme (apparently because of taking Minocycline in the past Lyme could have been killed off in my blood by not in my spinal fluid). So that's scheduled the following week.  Also, the Dr pointed out that they found a possible cyst of some sort on my left thyroid gland in the MRI of my neck.  He said that would be referred back to my regular Dr to look into further.  The fun doesn't end.

The spinal tap wasn't so bad.  I'd heard lots of terrible things.  But as I said I like my Neurologist.  I met him at the clinic.  My partner drove me.  I even kept my shorts and t-shirt on, and just sat on the bed and leaned over a hospital tray table, and a nurse held my hands and the Dr was behind me and gave me a local and then did the spinal there was no real pain.  I then laid flat on my back for about 30 minutes.  He explained about how there is a risk of the hole not sealing and that when that happens it can cause excruciating headaches.  That if I experienced any later that I was to lay back down on my back and if the head ache cleared that the problem was the seal and that the fix was to inject a "blood patch" back into the site that would form a patch or seal over the hole.  He said it was a simple fix, and that this was a common side effect but that many Dr's didn't explain it and/or many patients didn't understand and just suffered through the headache for days or until the hole sealed itself.  In my case, there was a little bit of blood when he pulled the needle out (not much) but he said that was actually good because that would create a natural blood patch.  In any case he got his vial of clear spinal fluid on the first try with no real effort.  He also drew more blood for more blood tests (without any problems hitting a vein).  and I had zero side effects from the spinal.

It took about two weeks to get all the results.  By Friday that week my Dr called me to report it was negative for Lyme.  After the two weeks, he finally got the rest of the results.  Apparently it was positive for some sort of bands (I forget the name) this was a confirmation of the MS.  We set up an appointment for the following week to discuss next steps and medicine options.  So now it is official - I have MS.

The next week my partner and I go to meet the Neurologist, and talk briefly about what this means - yes I have MS.  This isn't a death sentence.  I have RRMS, and the good news is that there are drugs today (called the crab drugs) that can prevent future outbreaks and slow down the progression of the disease.  He also said that when he started in practice 30 years ago, there were no such drugs and when they believed someone to have MS there was nothing really they could do other than treat symptoms.  He also said that without a doubt if I did not take one of the drugs that I would have other relapses it would be a matter of when and that the disease would progress and get worse.  He said that wasn't a 50/50 it was a 90% or higher likelihood.  He has no preference on which of the CRAB drugs - he said he has patients on each and many for several years. In some cases a patient will have reactions or one of them won't work and they might need to switch treatments but suggested it was my decision and gave me information to select 2 or more options and take home more information and read and make an informed decision.  So I did, I read the materials (granted from the pharmaceutical company's point of view to sell their drug/product) and read what I could find online.  My decision was to choose Copaxone vs any of the interferons.  I don't like the idea of daily shots, however in my opinion the pro's outweighed the cons.  No flu like symptoms for a day or more after each shot.  No potential liver and other major organ damage from long term use.  a slight possibility that it would actually help fight off the disease and not just prevent outbreaks.  A couple more weeks and I received my drugs and I met with a nurse to learn how to do the injections.

Ok, so now I have MS and I'm now on MS drugs.  Lot has happened in a relatively short amount of time.  The daily shots are ok, the shot stings but not bad, worst is a burning sensation a couple minutes after the shot is done.  An ice pack seems to help with that.  The red spot/welts seem to clear after a day.  I don't have a death sentence.  People with MS live long lives.  I am hopeful my daily life will not be effected in any significant way. So far it hasn't.  I find I get tired and I now listen to my body and rest.  Before I would have thought myself lazy.  Now I think I just need to take care of myself.  I'm still working on eating healthier; now not just to avoid too much carbs and to avoid raising my A1C and blood sugar levels but now also because it is important for the MS.  I'm trying to get more exercise, because I should due to the MS, because I should because I have bone-on-bone osteoarthritis in both knees and in my opinion (and my orthopedic surgeon's) I'm too young to get a replacement yet.

Next up was the cyst on my Thyroid so met back with my regular Dr.  who had just had me do another round of blood tests (it had been 3 months since last round - time flies when you are seeing all kinds of different Dr's and getting lots of different tests). My blood glucose level is creeping up, but the A1C is still good.  Apparently this means my liver is producing too much glucose at night while I sleep so it is possible even eating healthy won't help.  At this point we will keep watching.  She also added a symvistatin (cholesterol med) to my drug list.  Earlier this year she added lisonopril (blood pressure med) not to lower my blood pressure which is good but to protect small vessels and kidneys due to the potential of damage due to the high blood sugar.  I also take effexor (which is sort of an anti-depressant) partly for mood swings and pre-menopausal issues, and she upped the effexor to help with my climbing stress level (due to all the life changing news I keep getting). My cholesterol numbers were not bad - my bad cholesterol was 135 (normal people need to be below 150), but due to the high blood sugar and all the new guidelines are <100.  I also read something about some potential link between the cholesterol statin meds improving MS symptoms - don't know will have to read more.  My good cholesterol is low (35 and should be >50), so my Dr suggests drinking more wine.  ok I can try that.  She also scheduled me for an ultrasound of my thyroid.  She says cysts or goiters are common and if they are soft or not solid that it is no big deal.  She even has one herself.

Went for the Ultrasound, and then back to the Dr to get the results.  Not good.  The cyst appears to be several solid nodules.  Next step another appt with another specialist - this time a surgeon to look at doing a fine needle biopsy.  Met with him.  He said my thyroid number were low - .63 and normal is .5 - 6.0, and in his opinion the real range should be 1.0 - 4.0. Therefore mine is a low normal or in his range a low.  The numbers are a reverse of thyroid activity.  So low means over active.  Apparently over-active is a good sign that it is not cancer.  Because of that he felt it wasn't necessary to do the needle biopsy. Instead he scheduled a thyroid uptake scan test.  So the following week I went to the imaging center and swallowed a radioactive pill/capsule.  The next day I went back and they did an uptake scan.  Then did a contrast injection and they took pictures.  I met back with the Dr the following week.  Bad news this time.  The nodules were cold.  Apparently if you are going to have nodules you want to keep them warm.  Mine were cold.  Cold is bad.  Cold means it could be cancer.  On the good side Thyroid cancer appears to be like the only kind that is curable.  So the cold nodules mean he wanted to do the biopsy.  First just two biopsies of the largest node on the left.  If it comes back cancer, then we will need to schedule taking the Thyroid out.  If it is benign then we need to do the biopsy of the largest nodule on the right side.  They don't do a local for the fine needle biopsy. The theory is that the needle is so small you hardly feel it and the injection necessary to put in the anesthetic would hurt worse than the biopsy prick.  Maybe.  The needles are very small.  The stick isn't bad, it is when they hook up that shop vac or whatever to the needle and try to suck your entire guts out through that little tiny straw of a needle that hurts.  It made me cry.  I don't cry often.  He did the first and I cried, he asked if it was ok to go on, like at this point I see any choice.  M was with me.  She is always there when I need her.  I'm not sure I could be going through all this without her.  I go back next week with the results of the biopsy and to see if I need surgery or another biopsy.  Then more waiting.

When I look back, I'm not sure where this all begins.  I have had the tingling and numbness in my feet before this year.  The first time was about 2004 or 2005.  It didn't last as long and we attributed it to my sleeping on a featherbed causing a pinched nerve in my back, and when I switched back to my original bed it cleared up.  I've had other MS symptoms - recently (since the numbness in the feet legs) I have had the infamous MS hug - which feels like a girdle around the waist that is cinched in.  I have had issues in the past where i would struggle to find the words I'm trying to say, and some other things that might or might not be MS.  So I don't know how far back all of this goes, or where the path is going to lead.

This blog is just my way of trying to find my way.