And it's up to you to decipher them. Sorry I haven't updated in several weeks, as it turns out I relapsed. The doctor said the lesion in my brain had been active for at least six weeks and given my last post, that makes sense!
It all started when I began getting these strange headaches. They started out to be bearable, I would pop some aspirin and then lay down and in a few hours they'd be gone. They started with this slight burning right behind my right eye. I should have known, with the burning, that it was something more. For me, burning always means MS. Then they began to get worse. The burning would spread into my sinuses and the back of my throat. They would bring me to my knees, make me physical sick, I'd sneeze uncontrollably, my right eye would water and I couldn't deal with the symptoms, it was too much.
I took a trip to urgent care, since I don't have a primary in the area yet, and the doctor said it sounds like cluster headaches but since you have MS, we want you to get checked out by a neurologist as soon as possible. That doctor saved my life. I wish I could remember her name because I would send her flowers, a card or a fruit basket, or heck, all three! She made all the calls and she got me in to see a doctor at the Providence Multiple Sclerosis Center. Amazing!
The meeting with the PA was super informative and based on the pain, they wanted to get me in to an MRI right away. I went it for the MRI and as it turns out, I have a super large lesion on my brain that's been active for about six weeks. They sent me to the infusion center the next day and I started solumedrol.
This time around they did not put me on prednisone to taper and it was hell. The first week after I was so tired, sick and miserable all I did was sleep. Finally a few days later the giant boulder had been lifted off of my head and I was able to function. I could stand up without falling over, I could think, I could drive, life was getting back to normal.
I was also told I'm eligible for a clinical trial that will pay for everything, which would be great since my insurance company considers this a pre-existing condition!
I've also started to get a handle on my PCOs. This time I did a little research before going to a doctor and handpicked the one I wanted to see. Dr. Amato was actually recommended on a PCOs forum I troll around a bit. She turned out to be super nice, and put me at ease. She passed my test but only managed to tell me the stuff I already knew. Her solution was also just to give me a “band-aid” treatment of progesterone and birth control, all before getting the results back from my tests. I didn't have the courage this time to ask to have my cortisol levels checked but I have an appointment in a month so I'll bring it up then. Yup, this one didn't scare me away so I'll actually be going back!
And that's all the updating I have to offer. Although, I should send out a public thank you to Steven who drove three hours each way, twice, to take care of me when I was really bad. He made sure I didn't fall and did a wonderful job making sure I was okay. What an amazing man. After five years in a terrible, abusive, demeaning relationship- Steven is breathe of fresh air!
Showing posts with label solumedrol. Show all posts
Showing posts with label solumedrol. Show all posts
Saturday, August 20, 2011
Saturday, July 2, 2011
Seeking a doctor who cares enough to listen.
I've been thinking about my appointment towards the end of the month and I'm beginning to have some reservations. I hope this will finally be the one that I can count on to treat the symptoms and not the appearance. So many times in the past I've had doctors who just shrug me off as being overweight and only offer the advice “if you lose weight, you'll have normal periods.” While that my be in part true, there are much more sinister symptoms at work.
I have to know “why.” I will not simply just accept this from a doctor who supposedly specializes in PCOs. I honestly, wholeheartedly believe there is something much more to the puzzle that is my body than a simple “lose weight, feel great,” explanation.
I know there is. There has to be. I spent several months busting my ass on a low calorie/low fat diet only to lose four pounds (in the past, not recently- lol). I've done the whole weight watchers bit. I've even considered surgery (despite my MS). I know there is a missing link in the puzzle. Why?
Because the only time I've had a period in the last four or so years is when I've been on steroids. I'm not sure if it's the solumedrol (IV) or the prednisone that is responsible, but something is. Each time I've been on steroids I have one cycle and then as soon as I'm off them, I don't have anymore. There has to be something there. Some sort of explanation hidden in the recesses of my adrenal or pituitary glands. Something isn't working right and the steroids only help to kick it into gear.
There has to be another connection. Has there been a study done on the number of women who have MS that also have PCOs? Three quarters of the 400,000 people who have MS are women. According to womenshealth.gov, “between 1 in 10 and 1 in 20 women of childbearing age has PCOS. As many as 5 million women in the United States may be affected.” Of the women who have MS there has to be women out there that also have PCOs.
Studies have shown that some women who have PCOs are deficient in a hormone called estrogen. This same hormone has been shown to, if given at a steady flow (especially to pregnant MSers) actually help women with MS (some researchers state that the best treatment for women with MS is pregnancy). There's also the connection between women with PCOs taking corticosteroids in order to lower their androgen (male hormone) levels. This is the hormone, when at a higher level in women, results in a lack of menstruation, weight gain, acne and hirsutism (excessive facial hair).
So would an effective treatment be something like, estrogen and prednisone, as well as my rebif? If it doesn't work, what does it hurt? If it does work, maybe some doctor out there will get a research paper on PCOs and MS published. Who knows? The bottom line is that all I want, right now, is a doctor who will actually listen to me. I don't make excuses for my weight, I know it has a lot to do with poor diet and lack of exercise but I also know there are other factors at play. Will this new doctor finally be the one to listen? Will she order the proper tests? Will she do an MRI of my adrenal and pituitary gland? I'm not sure, but I'll keep hoping.
-Desiree
I have to know “why.” I will not simply just accept this from a doctor who supposedly specializes in PCOs. I honestly, wholeheartedly believe there is something much more to the puzzle that is my body than a simple “lose weight, feel great,” explanation.
I know there is. There has to be. I spent several months busting my ass on a low calorie/low fat diet only to lose four pounds (in the past, not recently- lol). I've done the whole weight watchers bit. I've even considered surgery (despite my MS). I know there is a missing link in the puzzle. Why?
Because the only time I've had a period in the last four or so years is when I've been on steroids. I'm not sure if it's the solumedrol (IV) or the prednisone that is responsible, but something is. Each time I've been on steroids I have one cycle and then as soon as I'm off them, I don't have anymore. There has to be something there. Some sort of explanation hidden in the recesses of my adrenal or pituitary glands. Something isn't working right and the steroids only help to kick it into gear.
There has to be another connection. Has there been a study done on the number of women who have MS that also have PCOs? Three quarters of the 400,000 people who have MS are women. According to womenshealth.gov, “between 1 in 10 and 1 in 20 women of childbearing age has PCOS. As many as 5 million women in the United States may be affected.” Of the women who have MS there has to be women out there that also have PCOs.
Studies have shown that some women who have PCOs are deficient in a hormone called estrogen. This same hormone has been shown to, if given at a steady flow (especially to pregnant MSers) actually help women with MS (some researchers state that the best treatment for women with MS is pregnancy). There's also the connection between women with PCOs taking corticosteroids in order to lower their androgen (male hormone) levels. This is the hormone, when at a higher level in women, results in a lack of menstruation, weight gain, acne and hirsutism (excessive facial hair).
So would an effective treatment be something like, estrogen and prednisone, as well as my rebif? If it doesn't work, what does it hurt? If it does work, maybe some doctor out there will get a research paper on PCOs and MS published. Who knows? The bottom line is that all I want, right now, is a doctor who will actually listen to me. I don't make excuses for my weight, I know it has a lot to do with poor diet and lack of exercise but I also know there are other factors at play. Will this new doctor finally be the one to listen? Will she order the proper tests? Will she do an MRI of my adrenal and pituitary gland? I'm not sure, but I'll keep hoping.
-Desiree
Tuesday, January 25, 2011
And now I notice a grumpy bit.
So, given that I can't see, I can't really see what's happening to my body as a result of these meds. But, I still have the sense of touch and as I was feeling my face I discovered I now have the lovely little solu-medrol pimples popping up all along my hairline on my forehead. Lovely. As if I didn't feel bad enough about getting rounder and softer, now add in lovely pimples and faded vision. What's next? My period? Curse my tongue!
Sunday, September 20, 2009
A Rebif Tweak
I had a bit of a tweak out this evening when I went to take my rebif. I had convinced myself it was going to hurt really really bad. I'm not even sure where this thought came from. Maybe it was because both Kel and Kristen were watching me. I hyped myself all up. I had originally planned on injecting it into my arm but the fear of that quick pinch freaked me out so much that I ended up injecting it into my belly. I don’t know what the fuss was all about- I didn’t even end up feeling it! Maybe it’s the collective sucking in breath by those around you that gets you going!
There’s still no real progress from the initial symptoms, except that the band around my waist doesn’t feel as tight, or perhaps I’m just getting used to it. I still have trouble breathing if I bend over or if I’m in the bathroom with the shower running (heat). I’m using my walker out in public and I’ve noticed that for about ten minutes my walking is okay (better than what it was) but after that it all goes down hill and my left leg begins to drag behind me.
When I stand up I tilt to the side. I think it’s because of the tightness in my midsection. It keeps me from really getting comfortable!
Sorry for the fragmented post. I’m exhausted but the fear of waking up with muscle spasms again has me quivering in fear. I can deal with pain in normal circumstances but any MS related pain has me calling foul!
That odd symptom I seem to only get when I’m on solumedrol came back in full force today! The last time I went to the endocrinologist I had mentioned to her that I seem to only get my period after I’ve had a round of IV steroids and sure enough after this round I’m at it again! There HAS to be some connection between the two (adrenal fatigue? Cushing’s?) but everyone just chooses to ignore it. It’s just odd that with everyone else the solumedrol makes their period go MIA and it makes me have it (and it’s the only thing that works too, otherwise I’m barren!). Maybe I should get a second opinion. The body is an interesting piece of work and I can’t help but think that the MS, the PCOs and this whole solumedrol/period thing are all related! I’m sure there can be one main cause for everything and as soon as I figure out what it is I’ll be cured and I can go back to living my life!
There’s still no real progress from the initial symptoms, except that the band around my waist doesn’t feel as tight, or perhaps I’m just getting used to it. I still have trouble breathing if I bend over or if I’m in the bathroom with the shower running (heat). I’m using my walker out in public and I’ve noticed that for about ten minutes my walking is okay (better than what it was) but after that it all goes down hill and my left leg begins to drag behind me.
When I stand up I tilt to the side. I think it’s because of the tightness in my midsection. It keeps me from really getting comfortable!
Sorry for the fragmented post. I’m exhausted but the fear of waking up with muscle spasms again has me quivering in fear. I can deal with pain in normal circumstances but any MS related pain has me calling foul!
That odd symptom I seem to only get when I’m on solumedrol came back in full force today! The last time I went to the endocrinologist I had mentioned to her that I seem to only get my period after I’ve had a round of IV steroids and sure enough after this round I’m at it again! There HAS to be some connection between the two (adrenal fatigue? Cushing’s?) but everyone just chooses to ignore it. It’s just odd that with everyone else the solumedrol makes their period go MIA and it makes me have it (and it’s the only thing that works too, otherwise I’m barren!). Maybe I should get a second opinion. The body is an interesting piece of work and I can’t help but think that the MS, the PCOs and this whole solumedrol/period thing are all related! I’m sure there can be one main cause for everything and as soon as I figure out what it is I’ll be cured and I can go back to living my life!
Monday, September 14, 2009
Last day in the hospital...
Today's my last day in the hospital and I'm somewhat relieved but at the same time I'm a little apprehensive about going back to my real life. My doctor has decided he wants me out of work for two weeks so nothing will get in the way of my physical therapy and outpatient care (they like to call me a non-compliant patient because I never do follow-up visits or physical therapy because I'm usually rushing back to work). I have the paperwork signed for temporary disability parking and I will be getting a prescription for a walker as soon as my discharge paperwork is set in motion.
I hope I've been a good little hospital patient. I'm not used to being waited on and I have a hard time turning that control over. A lot of the nurses like to joke with me that I do a lot of their work for them. I just explain to them that I know there are patients who are worse off than me so I'm okay with being independent. I've got to master it all on my own for when I go home anyways so it's great practice.
I'm still having issues with the MS hug, especially when walking so the walker will be a great improvement, this way if I lose my breath I'll be able to clutch the walker for support instead of falling into the wall or grabbing the nearest object. Physical therapy is a bit annoying, but it's a necessary evil if I want to be able to walk normal again. I've noticed some improvement since doing my laps even though my left foot is still dragging.
I dropped my course load for school down to twelve credits instead of fourteen in the hopes that I will be able to concentrate better. I'm almost tempted to contact most of my professors and let them know that I may be experiencing a bit of MS brain fog over the next few weeks while I taper off on the prednisone but I'm not sure if I should share that information. What would you do?
The good news is my blood glucose readings were far better than they have been (152) despite Kelly sneaking me in some sugar yesterday. This might be on the verge of TMI, but the only really bad side effect from the solumedrol is the constipation! I have yet to go and I have been here since Friday morning. I feel like I'm going to explode. Despite the constipation the scale down the hall that I passed last night while doing my laps says I've lost some weight so I'm really excited about that. I wish I could tell if my pants were loose but I can't right now because of the hug everything feels tight. I plan on sneaking over to the scale in a few minutes just to get a final weigh in before I boot scoot out of here.
I looked at myself in the mirror today and my face is red, I mean really red, but I don't seem to have any puffiness going on, which is a good thing, who needs a moon face when you are already fat!
I have to say that out of all the times I've been on solumedrol this has to be the easiest time I've had. Maybe it was because of the hospital stay. I was able to be comfortable, I didn't have to constantly get up and take care of things around the house and I was just able to get well. I think I prefer this method, despite my obvious lack of being cooped up. It was also nice not to have to worry about cleaning, pets, cooking, bills, etc. I just wish I had a copy of my budget here with me because I have no idea what bills I'm supposed to be paying in the next two weeks. I guess I will just have to play it by ear and see what happens. Doing it all by the seat of my pants! That's the way to live life with MS I suppose!
I hope I've been a good little hospital patient. I'm not used to being waited on and I have a hard time turning that control over. A lot of the nurses like to joke with me that I do a lot of their work for them. I just explain to them that I know there are patients who are worse off than me so I'm okay with being independent. I've got to master it all on my own for when I go home anyways so it's great practice.
I'm still having issues with the MS hug, especially when walking so the walker will be a great improvement, this way if I lose my breath I'll be able to clutch the walker for support instead of falling into the wall or grabbing the nearest object. Physical therapy is a bit annoying, but it's a necessary evil if I want to be able to walk normal again. I've noticed some improvement since doing my laps even though my left foot is still dragging.
I dropped my course load for school down to twelve credits instead of fourteen in the hopes that I will be able to concentrate better. I'm almost tempted to contact most of my professors and let them know that I may be experiencing a bit of MS brain fog over the next few weeks while I taper off on the prednisone but I'm not sure if I should share that information. What would you do?
The good news is my blood glucose readings were far better than they have been (152) despite Kelly sneaking me in some sugar yesterday. This might be on the verge of TMI, but the only really bad side effect from the solumedrol is the constipation! I have yet to go and I have been here since Friday morning. I feel like I'm going to explode. Despite the constipation the scale down the hall that I passed last night while doing my laps says I've lost some weight so I'm really excited about that. I wish I could tell if my pants were loose but I can't right now because of the hug everything feels tight. I plan on sneaking over to the scale in a few minutes just to get a final weigh in before I boot scoot out of here.
I looked at myself in the mirror today and my face is red, I mean really red, but I don't seem to have any puffiness going on, which is a good thing, who needs a moon face when you are already fat!
I have to say that out of all the times I've been on solumedrol this has to be the easiest time I've had. Maybe it was because of the hospital stay. I was able to be comfortable, I didn't have to constantly get up and take care of things around the house and I was just able to get well. I think I prefer this method, despite my obvious lack of being cooped up. It was also nice not to have to worry about cleaning, pets, cooking, bills, etc. I just wish I had a copy of my budget here with me because I have no idea what bills I'm supposed to be paying in the next two weeks. I guess I will just have to play it by ear and see what happens. Doing it all by the seat of my pants! That's the way to live life with MS I suppose!
Sunday, September 13, 2009
Final Evening in the Hospital
It's 11:30 pm. and I'm partially awake. Kel and I got into a little tiff today at the hospital, I don't know if it's the roid rage or just the frustration of still being here. It could also be the restricted diet they have me on. I'm having the worst cravings for sugar and caffeine but unfortunately the solumedrol is causing me to have really high blood glucose levels. Yesterday I clocked in at 232 and today it was 181! Despite my PCOs my glucose levels are usually pretty normal (fasting glucose is in the low 80's) so I'm kind of shocked by how the steroids have really affected my body.
I guess that's why it's good that I'm in the hospital because it's opening up the possibility of getting to the root of all my troubles! Too bad there's only one more day left.
My head is swimming right now. Kel snuck me in something with sugar and now I've got a serious headache so I'm hoping this isn't some diabetic shock symptom. Blah! I don't know what to do.
There is some form of silver lining.. I think I've managed to lose some weight! I guess restricted hospital diets aren't too bad, just not my cup of tea. I've never managed being told what to do very well so maybe it's just an act of rebellion.
In other news I have several people, the Shuk (my neuro) included, telling me my best bet would be to go on disability now that I have two new lesions on my spine and that because it's a progressive disease I really need to cut the stress out of my life. Unfortunately my biggest stressor in my life is my job. Who knows what I should do?
I guess that's why it's good that I'm in the hospital because it's opening up the possibility of getting to the root of all my troubles! Too bad there's only one more day left.
My head is swimming right now. Kel snuck me in something with sugar and now I've got a serious headache so I'm hoping this isn't some diabetic shock symptom. Blah! I don't know what to do.
There is some form of silver lining.. I think I've managed to lose some weight! I guess restricted hospital diets aren't too bad, just not my cup of tea. I've never managed being told what to do very well so maybe it's just an act of rebellion.
In other news I have several people, the Shuk (my neuro) included, telling me my best bet would be to go on disability now that I have two new lesions on my spine and that because it's a progressive disease I really need to cut the stress out of my life. Unfortunately my biggest stressor in my life is my job. Who knows what I should do?
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