With most journeys come obstacles and mine is no different. I have been silent for a couple of months now because my MS guided journey hit a blip. I started this blog to give other MS sufferers hope and perspective. Suddenly I found myself in a state of hopelessness as the events I spoke of in my previous entry, “The Tangled Garden” unfolded.
My appointment that followed that post didn’t provide the answers I had hoped for. I wanted Dr. K to show me the MRI’s that had been in question, side by side, or at least one after another so I could see for myself what she saw that the “Plan B” specialist did not. My thought was that I would either regain faith in my specialist, or know that it was time for a new doctor. Instead I found myself being shown all my MRIs beginning with my latest taken that morning and going back to the first as Dr. K pointed out the various active lesions. She clicked through the results, pointing to lesions and showing me what my brain should look like compared to what was showing on my MRIs. She quickly pointed out that my latest showed nothing new on my brain, only one new lesion on my cervical spine. By the time we got to the MRIs that were in question, I was already emotional. My husband came into the appointment with me for the first time and somehow it made me feel weaker. I was never really shown what I was looking for, or else I was just too upset by the time it was presented. My husband seemed to think she showed us all the lesions in question. She explained how she was very particular and that she looked at these things all day long thus making her an expert, while it was harder for most to see certain things.
Dr. K seemed defensive from the start of the appointment because she knew I was questioning the “Plan B” discrepancy, yet she stated that multiple opinions were good and that she was on my team wanting for me to have only the best treatment. She said that she would like to introduce me to some of her colleagues, particularly the director of the center at my next appointment, which she suggested we move to 3 months rather than the usual 4. She also explained that the philosophy of this MS center was to knock back the active lesions with Solu-medrol infusions and that nearly every patient at their facility was treated with these steroid infusions and at some other centers, no one received them. She said that the good news about my lesions was that they were active and therefore treatable with steroids. She was strongly urging me to have the infusions, beginning that very day with a second treatment the following day. Once monthly infusions would then be prescribed for the next few months. This new medication was going to be in addition to the daily Copaxone injections.
Of course I was feeling quite vulnerable by that point and when my husband asked why I needed this medication if I didn’t have any new outward symptoms, I became angry, thinking he just didn’t want to have to bring me back to the city again the next day for the second round. I said that I didn’t want to appear to be a difficult patient or miss an opportunity to fight this disease and so the next thing I knew I was having an IV line inserted and Solu-medrol began to drip into my bloodstream.
After my infusion I went to the scheduling desk to make my next appointment to follow-up with Dr. K. It was there that I learned that she was actually leaving the practice. She never bothered to mention it during my appointment. I was told she was leaving at the end of June. I guess that is why she decided she wanted to see me in June rather than July. Being fresh off the steroid line, my mood wasn’t prepared for this news. It’s not that I had a particular emotional attachment to her in any way. After all, she was the one who had caused my tangled garden. I guess I should have been happy. It appeared to be a good solution in that I got to stay at the nationally famous MS center but with a new doctor, thus giving me another opinion. The worst of it though was that she didn’t tell me she was leaving and I now had the Solu-medrol flowing in my bloodstream, the drug prescribed by her, the doctor who was causing me to question everything. I told the scheduler that I wanted to make my next appointment with whomever I was being assigned to. I was no longer interested in wasting my time with Dr. K.
Solu-medrol leaves a terrible taste in my mouth, literally and figuratively. Solu-medrol makes me feel weak, again literally and figuratively. Solu-medrol leaves me with writer’s block. Tomorrow will be the third such treatment as I have a visiting nurse scheduled to arrive first thing in the morning. I am thinking it will be my last.
Hi, I just wanted to write you and tell you that I’m sorry for your experience. I have been through the same thing – minus the doctor leaving part. Dr K. certainly did not do the right thing at all regarding your MRIs or her departure. I’m hoping that your next doctor will be more interested in your case and be straight up honest with you. I’ve had MS since 2005. Well, that was when I was diagnosed, but I suspect I had it before then. I am currently on Copaxone. We tried Rebif at first because interferon is a more aggressive treatment. According to my doctor, Copaxone is better tolerated by most patients. (Shoot, I sound like a commercial, don’t I?) I’ve had Solu-Medrol treatments before and they aren’t fun. I have diabetes and each time I’ve had a treatment, it would send my blood sugar through the roof. So I’d feel terrible because of that. Then it would keep me awake FOREVER. I hated that part. Then I’d feel terrible. Not fun at all. But they’d give me the infusion in an effort to quickly stop whatever activity i had going on at the moment. So there’s that. Maybe the next appt you have you can have them really really explain what that dumb solu-medrol does exactly. I really do think the doctors need to explain what to expect before prescribing it. Sorry for such a long response! Have a good day.
ms guided journey said:
Thank you for your supportive comment. I appreciate it and while I don’t like writing negative posts, I know that it’s all part of the journey. I understand what the soul-medrol is for, but would likely appreciate it more if I had a relief for symptoms that I actually experience, rather than silent ones in my brain and cervical spine. Don’t get me wrong, I am thankful that I haven’t had an exacerbation that I could actually detect, but when medicine makes you sicker than you otherwise feel, it’s a tough, metaphorically speaking, pill to swallow. I know I need to contact my new specialist and establish a relationship of sorts. I am only scheduled to meet him in August. If I knew who was actually on my team I may feel more supported. Best wishes to you too!
The reason the dr seems to feel it would “cool off” those active lesions. Are you having any symptoms? I’ve only taken infusions when I have troublesome symptoms. I’m sorry you have such a bad reaction to the drugs.
I am also on copaxone, for five years. I have been relapse free for three years and whether its due to the copaxone only god knows. Its not a cure, just a means to try to limit relapses. The steriods are used during active relapses to limit how long they last.
You’re new to MS I see, and as I said, the first 2 years are the hardest. I think your blog is a great way to start getting things sorted out.
Marty Murray said:
I dunno, but it sounds like your husband had it right. Does not seem to make sense to use more medication when your health is not getting any worse.
ms guided journey said:
Well apparently health is not always an outward appearance according to my doctor. I will stick with the Solu-medrol for the 6 months and I plan to see a beautiful healthy clean brain come August.
I appreciate you sharing your experience. I was diagnosed 16 years ago. I waited 13 years before I started taking copaxone, which I’ve been tolerating well . Solumedrol is another story! The injections- which I have only taken in conjunction with a relapse makes me depressed and wacky, in addition to causing the vein that’s being used to swell up and shut down. I asked my dr for an alternative and Solumedrol is the best option for a relapse BUT you can take it in pill form!!! You have to take about 15 pills per day to equal what you get via IV and take the pills for about a week however I found it much better to tolerate than the IV. I wasn’t wacked probably because the IV hits your system all at once versus taking the pills throught the day. I reccommend this to anyone who wants to avoid some of the stress of Solumedrol. I am following the wahls diet too. I was flowing you tube too but received the book as a gift and its much more comprehensive. I will check out the daily apple website you’ve listed. Stay strong and keep progressing in health!
Yours in Christ,
ms guided journey said:
Thanks for stopping by Jeanine. Did you take any other meds prior. I’ll look into the oral solumedrol. Thanks for sharing.
I did not take any other meds prior. Just Solumedrol with relapses. In retrospec I should have probably started copaxone when I was diagnosed, but my dr left it to me to decided when to start after I balked at daily injections. He said ‘Well the MS society wants everyone diagnosed to take a daily MS mediciation, but much of their funding is from the pharmaceutical companies so you have to question who is in bed with who”. Being inherently skeptical I decided to forgo treatment. Then I began to hear of ‘silent MS’ and decided to begin to treat to take care of any possible damage that may be occurring that was not showing outwardly.
I am now looking at food as medicine.
ms guided journey said:
I am happy to say that my last MRI showed no new lesions! Maybe there is something to that food thing…18 months into it and whether it is the diet or the copaxone or just luck,I’m sticking with it.