GoMindfully's story

About four years prior to this post, I started having morning stiffness. I have been involved in the sport of Judo for many years and believed it was probably just being soar from all the throws. I went to see my PCP/GP and he said, "ahh, you just turned 40 and that is part of getting old".

I had a few episodes of my vision going black and fuzzy. Then some problems gripping objects. Then some fogginess. I was sent to a neurologist who said "your nervous system is way out of whack - you are hyper-reflexive and all over the place - definite long tract nerve damage". He ordered MRI's, blood work, CT scans (and I found out the hard way that I am allergic to CT scan dye/iodine). All my test were negative. He sent me to a psychologist - which was ironic as I am a psychologist. The only thing good to come out of that mess was to find out that I, like my son had Aspergers (if you don't know what that is - it just means I am smart and strange. :) ). Not coming up with a physical cause to anything - I believed it was all Judo injuries and maybe some OA.

I then had (what to me was) the strangest course. I would have months where I felt great and could run up steps, etc. I even competed in early 2012 in a National Judo Tournament at the age of 43. I was cured! Well, at least until summer. Then when the hot weather hit in the Midwest, I started having back pain, and whole body stiffness. The rare moments when I would work out, I felt very itchy, especially my back legs and ankles. I slept much and my wife alternated between being mad and concerned. She thought I was either depressed, not liking my job (because Sundays were a big sleeper day). She thought at times I was trying to get out of mowing or housework. I then seen a string of doctors and a chiropractor. All of these people were impressed with my youthful looks and muscles, saying things like "you look healthy to me".

One of my visits was to a spinal doctor. He noticed reflex problems as well as a strange rash that was very mild, but on both of my shins. I told him that it had been there only a few months, but I was itchy prior to this when I worked out. He sent me for an MRI to rule out spinal compression but told me to go see a dermatologist. I seen the dermatologist who had taken a biopsy - "it is psoriasis", he proclaimed. He said that he was very, very sure I had psoriatic arthritis. He directed me to see a rheumatologist. I see the rheumatologist on Friday.

When I first came to this sight, you all had post that, frankly, scared the crap out of me. Your talking of infusions, meds that could cause cancers, and all that had me vowing to not return to this sight. But like a child peaking up from the covers, I keep coming back. I still have worries: "I am prone to sinus infections, and if the doc puts me on something that lowers my immunity, I am doomed" and "oh no, my mothers mother had cancer - I can't be on that med" or "my acid reflux will not handle this medication". I also have a concern that the rheumy will brush me off like others did.

Today, I am very soar. I have difficulty focusing at work - not so much on patients, but on typing and remembering things. My back is killing me. I also feel like I have the flu. But, I also have you. Thank you all for allowing me to be a part of your journey, my journey, our journey!

Here's how I look at what is affecting us:

Fear the disease, not the treatment.

I was misdiagnosed for YEARS before my rheumy put everything that was affecting me together for a diagnosis. I made a list of all my problems and gave it to him during my visit. We went down the list one by one and discussed each issue. Just let him know ALL of the issues that you are having. The list really seemed to help. I'm getting Remicade infusions at the present time. Not perfect as I have some good days, some bad days, and still have occasional different sore joints. I think it's just something that we all have to deal with. Hope your appt. goes well.

Hang in there, some of the post on here can be scary if read in isolation. We can often post in our lowest times, in pain, in grief, in confusion, in depression…but we are a hand to hold sometimes, a shoulder, an ear to tell what you cant tell your nearest in case you frighten them :slight_smile:

Family history will be critical, except you are just old enough that even if you parents grand parents aunts uncles etc had it, the either denied it or it was called something else so you are going to have really think hard. The important things you can help him with is how long that morning stiffness lasts its important. (Keep track) What joints are involved and how often. frequently (make a list) Yeah it hurts, he knows that, but if he seems unsympathetic, hes not but he sees enough Drama Kings/Queens that everything goes past a huge amount of salt. Don't have painted nails (toe or finger.) If there have been changes let him know, if you have had a manicure and the nails have been buffed, let him know. have ever had a finger or toe swell up (like a "sausage") When?. The more you think of theses things before the more likley a bell will go off nothing worse than an AHA moment on the way home..... These are the Criteria (and things he will be looking for: http://www.medicalcriteria.com/site/index.php?option=com_content&view=article&id=256%3Areupsa&catid=79%3Arheumatology&Itemid=80&lang=en

The CASPAR is most used in the US.

FWIW the vast majority of folks take their drugs with no problem, those of us who do have problems would STILL have to have them pried from our cold dead hands.

Scary things here? Your a psychologist, right? I'm sure there is a name for this like maybe therapy?? But it is rare that people with a chronic (and painful) disease can really let loose AND focus on themselves with some understanding. Being able to do so anonymously is a pretty cool thing. You can really open up.... With any forum there are those who move from crisis to crisis looking hard for the next one (not much of that here) those who pass through with a question, get it answered and move on, and those who really do have problems. NEVER is this group representative of the population at large. Good Luck and keep us informed how it goes....

GoMindfully said:

Thanks Sherm.
Any advise or words of wisdom from any of you for my upcoming first Rheumatologist visit this Friday (day after tomorrow)?

for sure fear the disease. auto immune diseases can CAUSE cancer, in addition to heart problems, joint damage, etc.

i'll take my chances with the drugs :)

good luck with your treatment buddy. youre in the right place for support.

yeah medicine has sideeffects and they have to be monitored carefully, but when the medicine works, it feels so much better...

good luck with your appointment tomorrow!

We'll take this a step at a time. He wants you on a biologic and wants to skip all the crap in between. You have a good doc. Biolgical treatment is forty grand or more a year. The insurance company will scream bloody murder, but that doesn't mean they won't do it. Sounds like you doc knows how.......... Don't you worry about it. We'll be here. Just take care of yourself. Whens your next appointment?

If you bomb on the xrays, there are yet otherways to get what you need. Insurance companies don't diagnose, prescribe, or treat. Its easier to get along than to go to the mattresses and have to remind them of it. He is starting at your feet. there are 36 more entesitis points that he can MRI at about 3 grand a piece ( without pre authorization).They (insurance company) will get the message. In fact I really like the way you doc thinks.

Go mindfully, I have really great insurance, every provider's office staff remarks on it, but I still have to jump through the hoops. For too many years insurance companies paid for everything no questions asked and both patients and Doctors got lazy and ordered every test and every pill requested. I have had people ask the doctor to write for Tylenol as their "insurance will pay for it". I have also seen a lot of doctors order a lot of tests as they have been sued by everyone and their uncle. It is a bit insurance driven right now but I understand insurance companies, doctors and patients should try the less expensive medications first and if they work great. If they do not work then we try the more expensive medications. I am very grateful for my insurance as they have been paying for both the expensive medication I take and the less expensive ones too. I pay $10 a month for both my biologic and my mtx. While I do not like that treatment is sometimes insurance driven I do understand it. For far too long we have all had the "throw a pill at it" mentality and now the pendulum has swung; it will swing back. Boy do I sound like an old nurse......but if one more patient begs me to cure their cold because they can't take time off from work to rest, they don't want to take over the counter medications, there must be a prescription to cure this as it is so inconvenient.......I am an old nurse..........

Sorry for the tangent.....you will get the biologic but your doctor's office needs to go about it correctly to get it paid for. Are you taking a NSAID in the mean time? Is your pain tolerable? I have you in my thoughts.

You are allowed to....this disease sucks at times. I do not think you are whinney; do keep a log of all your "complaints". They do give clues to disease process etc. I take Naproxene 2 in the morning and 2 at night and 1000 mg Tylenol 3 times a day. The NASID is important to reduce inflammation; the Tylenol is for better pain control only. They do not interact. I also put Salonpas patches on various sites of tendonitis. They are over the counter too and don't interact with anything. They have a little NASID topically that seems to help reduce inflammation and pain where tendons insert. Sometimes I get red and swollen there and they really help. I will keep my fingers crossed you get a diagnosis and medications quickly.

I don't remember if I had to stop NSAID for MRI or CAT scan. I did have to stop it for a colonoscopy and was quite sore but the medications they give you during it are wonderful I was pain free for the first time in months! I do not think the NASID reduces the inflammation entirely but do call your Rheumy's office they can tell you. Good luck.

I look at this way, the more I understand and better informed I am about PSA the less concerned I am and it helped me accept it and make the best of life that I can for myself. This did not happen overnight even with the training and it took me a while to get to feeling this way and with help along the way.

Most of the meds we use have been around a long time and there is plenty of information available. There could also come a point in time where life without the meds can be a whole lot worse than any of the risks associated with them.

It doesn't matter where we get help and support from. It is more important that we find it when we need to.