New in KC

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New in KC

Postby catburgers » Sun May 27, 2012 12:31 pm

Hi all,

I've been lurking here for sometime but finally decided to post.

I was officially diagnosed in 2004 after I had about of optic neuritis and MRIs revealed brain lesions and other MS activity.

I largely ignored my disease for the next eight years because I saw no outward symptoms and it was so impossible to get an appointment with my neurologist. After a **severe** amount of stress at work and life difficulty this year I experienced an exacerbation beginning in March. I started to see a new neurologist but things have not gone well between us, ie she doesn't trust me to know my own body.

The slight tingling I felt in both hands progressed into paralysis of my left hand/arm. She treated with high dose (60mg) oral prednisone and did a VERY fast taper (reduce by 10mg every 2 days). As I came off the first round of steroids new symptoms started to appear but she refused to believe it was a new exacerbation because all the literature says that exacerbations must be separated by at least one month. MRIs less than 1 month apart revealed new brainstem lesions, at which point she put me on an even faster taper of prednisone.

My first exacerbation was localized to my cervical spine and this second flare is brain stem centered. I'm now numb from my right ear down to my right foot (the other attack was my left forearm/hand).

I'm at odds with my doctor because I feel she isn't listening to me when I call and say I'm experiencing brand new symptoms. Her office doesn't return my calls for 3-4 business days. Even then the doc refuses to believe it's new disease activity until she does a full round of tests, which only prolong my agony another week and I finally get steroids.

Is this common? I would appreciate a sanity check because I've lost mine through all this. I've got several appointments to see different neurologists in the next couple months. I feel I need to develop a good level of trust with my neurologist...one that doesn't avoid my calls for a week and refuse to believe the symptoms I report. How much of a working relationship does anybody else here have with their doctor? I'm hoping I'm not alone in wanting more responsiveness especially in times of crisis.

Jon,
28,
From KC, MO
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Re: New in KC

Postby Froggie » Sun May 27, 2012 9:13 pm

Hi Jon- I'm sorry to hear of your travails! It is crucial to have a good working relationship with your doctor! If you can find an MS specialist, even better. They tend to be more responsive and understanding. My first neurologist was preoccupied with other things and her office was totally unprofessional. I was having a relapse including difficulty breathing as a symptom and after being unable to reach her, my husband drove me to the hospital. I even called her from the road to no avail. The hospital wait time was going to be at least three hours and we decided to come home. My husband tried the neurologists office again and got the answering service. The answering service gave the office number, which routed him back to the answering service. We couldn't get the physician on call. It took 19 1/2 hours for my neurologist to call me back. She said, "Oh, you don't need to go to the hospital- come to the office for a Prednisone script". After that experience, we talked to the office manager and got the runaround from her. It was basically our fault that we couldn't get the physician on call! Totally inexcusable. As a result, I saw an MS specialist and then a new local neurologist who were much more responsive. They actually had the audacity to call back in a timely fashion!

Are you on any treatment besides the Prednisone? When I was first diagnosed, I was on Copaxone and having relapses every few months. The specialist I went to requested a new MRI, which showed more activity than he liked to see. He said I was a non-optimal responder and we looked at other options. I've been on Rebif for over two years and have been stable with no new activity.

Good luck! I know how frustrating it can be to get the run around. And really, you know your body well enough to know if something is wrong.
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Re: New in KC

Postby catburgers » Mon May 28, 2012 7:16 am

The new neuro (bad responder) started me back up on it but between March - late May I was not on a disease modifying therapy.

I guess my frustration mainly lies with my own prednisone taper experiences. I need a softer taper than most people. From the steroids she prescribed I had a very "hard landing". Trying to convince her to go slower proved futile. Prednisone is not something to mess around with.

I'm back on copaxone now but it will take several months before it reaches clinical effectiveness.

How have you responded to Rebif? You mentioned stable for 2 years -- no new lesions? That's fantastic!
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Re: New in KC

Postby Froggie » Mon May 28, 2012 1:05 pm

So far, so good with the Rebif. I get the occasional next day malaise and still fight with flu-like symptoms, but overall I've done very well on it. My old neuro wanted to enroll me in a Gilenya study last year, but I requested an MRI to see where I was. No new lesions, so I stuck with the Rebif. As the saying goes, if it ain't broke, don't fix it! I have since moved and am in a much better situation overall. My new neurologist is an MS specialist and is top notch. She wants a new MRI before my next appointment (six months), but I don't foresee any changes.

I see the prednisone as a necessary evil. I hate taking steroids, as I often feel like Helga the East German athlete without trying.

I hope the Copaxone works for you. Do you get any skin reactions? I got horrible hives and the injection site often itched long afterwards.
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Re: New in KC

Postby catburgers » Mon May 28, 2012 3:20 pm

Yes! I get horrible horrible burning for 30 minutes after the injection of Copaxone, no matter what prep, warming, icing or even Tylenol. It's even worse taking the Copaxone in areas where my nerves are just trying to heal so I'm super sensitive to touch in those areas. The burning is what made me to stop taking Copaxone in the first place. I originally tried some of the interferons but experienced extreme emotional lability and flulike symptoms that were worse than the MS.

My doctor strongly advised me not to go on Gilenya.

Prednisone never makes me feel energetic. It never even makes me feel good. It just makes me sleep and not think clearly. I have somewhat atypical reactions to medications....something my current neuro dismissed (except for my GP who is pissed at this mismanagement).

I had been completely symptom/progression/relapse-free for eight years and not taking any disease modifying therapy. I wonder what change could have kicked this off. I suspect it was a virus I picked up from the drinking fountain at the gym combined with extreme work stress.
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Re: New in KC

Postby Froggie » Mon May 28, 2012 8:59 pm

Froggie wrote:I had been completely symptom/progression/relapse-free for eight years and not taking any disease modifying therapy.


That's great! You're obviously doing something right. I know that stress can wreck havoc on one's system and I'm very sensitive to it. Since moving last year, I'm much happier and my overall health has improved. It's amazing what getting out of a stressful environment can do! I still have the stumbles and some cognitive issues, but they're manageable.

I was never exactly energetic on the prednisone! I just started developing muscles despite not working out and feeling like hell on wheels. It was like PMS 24/7. Husband and dog were thrilled...

I think the burning/itching at the injection site was my biggest complaint on the Copaxone. Benedryl and cortisone were my closest companions. Thankfully, no such reaction with the Rebif. I'll occasionally have some pain and bleeding if a capillary bed gets hit, but it's an infrequent event. I keep a journal and do manual injections, which helps a lot.
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