Tuesday, March 16, 2010
The treatment of MS takes three forms - (1) steroids for acute attacks; (2) medication, therapy, and/or devices to help manage symptoms and disability; and (3) disease-modifying therapies and/or lifestyle changes to tackle the progression of the disease.
Amy is talking about symptom manageme...
Hi Lisa,
It's been about a year since active lesions were found in an MRI of my head, and my neurologist mentioned the possibility of MS as the cause of my various symptoms. I'm still not formally diagnosed with MS, but instead said to be suffering from "white matter disease". From a practical standpoint this means that MS medications are not really an option for me - yet.
Most of my symptoms revolve around tremors, various visual disturbances, and cognitive problems. For the tremors I take Propranolol (160 mg per day). This keeps the shakes under control most of the time, but I still avoid such things as: ordering soup in restaurants, going to buffets (stupid trays!), and carrying coffee in cups without lids.
For the visual problems (unexpected flashes of light, occassional dark spot in my view, and double-vision) I don't know what to do. I'm accepting of it and don't let it bother me as much as possible.
The cognitive problems are the worst. I'm deeply embarrassed by my inability to find the right words to properly carry on a conversation or tell a joke. I can't remember faces and names, and I lose track of time. I deal with this by taking a lot of notes and making lists. I also found that I do better communicating with people by e-mail (where I can gather my thoughts and send the message on my own terms). Next best is communication in person. Absolute worst is talking on the phone (very awkward since it takes me longer to process what I hear and come up with the words.)
All of the above (and maybe a symptom by itself) has led to depression and anxiety. Further complicating things, I suffer from PTSD. As a result I am taking Citalopram which seems to help. The Propranolol and Citalopram led to low blood pressure and resultant ED, which further leads to depression. All-in-all a seemingly endless cycle.
Other than the above I don't really know what I can do about symptoms until I get a formal diagnosis. I'm looking into the idea of volunteering for clinical trials, etc. in hopes of something that might work.
Any suggestions from you or the other readers?
HI KJ, you and i are riding in the same boat. I'm CIS at this point. i had a few wonderful people on this site suggest to control what i can when i was in complete panic mode...rest, exersize, diet, supplements, reduce stress and take many deep breaths. it's an everyday up and down. i know my diet changes have significantly helped my stomach issues. vitmain D can help with fatigue. all of this took about 4 months to really notice some kind of stabilization instead of huge crashes. i am far from perfect with my diet. sometimes i have to eat those chocolate covered pretzels or a big bowl of pasta or a juicy hamburger...i'm making myself hungry...and i react so much stonger when i don't do the right thing. same with stress. but that's a tough one. I'm very wired to be productive everyday. but i try to remind myself - it is just what it is and doing what i can and to heck with what people think. I know what you mean about feeling embarrased i feel sometimes center stage - which is a place i hate! i'm a bass player - we are supposed to be in the background!
you wrote "The cognitive problems are the worst. I'm deeply embarrassed by my inability to find the right words to properly carry on a conversation or tell a joke. I can't remember faces and names, and I lose track of time"
All the same with me...It took me 5 minutes of going around in my head to remember if it was tuesday or wednesday this morning!
This helps me when i get out - I take 2 mgs of diazapam when going out into events or public settings since my nerves get compeltely jangeled in loud , bright places wth too much activity. it's such a small dose i don't get dopey and can last much longer when talking to people. helps me to focus a bit.
Lisa - thank you for these videos - they are so helpful and i love that the library is growing here!
But i bascially just wanted to chime in to say KJ, i'm here too. every day is different. every day has a big fat question mark over it's head. and as much as i hate that we are both in this boat, it's this site and meeting people like you via email that remind me we are not going thru this alone.
Suz
Hi KJ,
It's good to see you back! Hope you are doing well besides the symptoms from the unspecificed white matter disease. Being in limbo really is difficult but I'm glad that you are able to use some treatments to deal with it.
Like you, communicating and organizing can be a challenge. My mind used to be like a complicated organizer where information was easily retrievable. I could keep track of so many things at once. Now, when I'm asked what time I scheduled something, I resort to "whatever I said in my email. I'll have to check that as well. I don't remember." Email is a good way to keep track of things.
I have finally gotten to the point where I can more easily admit that I don't know everything nor can I remember everything. More often I say, "I know I know this, I'm sorry, but I can't remember. Please remind me." Same things with names.
I don't really have any solutions, but I can offer my understanding especially in the depression department. That's a monster I've battled for over 20 years. I took Zoloft seasonally at the beginning, then finally all the time about 12 years ago. I even got up to 250mg daily at one point. Last year we added Wellbutrin and I definitely saw a difference, so much so that I wanted to taper off the Zoloft, which I did over the course of a year. In the process my anxiety levels have increased (as Zoloft also helps with different types of anxiety associated with depression).
I really don't want to go back on because I was hoping to get my libido going again (my sex life has been kinda pathetic). Hasn't happened just yet but in talking to my PCP, we going to try some mild estrogen cream to try to reverse my "atrophic vaginitis" - a condition usually associated with post-menopause, and at 41 I'm not there yet.
For the anxiety, I have a very low dose prescription of alprazolam (xanax) to take as needed. It's only .25mg and I will even break it in half sometimes (not an extended release version). It helps just enough, but if I need more than I can take the other half. The xanax also helps with the teeny tiny ataxia (tremor) I have in my arm which now acts up when I'm under a whole lot of stress or overstimulation.
There is some controversary, but performing musicians (especially students auditioning for big symphony jobs) often use Inderal (propanolol) to help counterbalance the excess adrenaline in certain circumstances. I tried it, but doses are usually at 10mg or so. I can hardly imagine taking 160mg which I hope is helping you. Other drugs which have been tried for ataxia and tremors include propranolol, clonazepam, primidone, isoniazid, buspirone, ondansetron. Then there's cannabis, but Virginia does not have any medical marijuana laws in place.
As for cognitive issues you've mentioned, keep writing those notes and lists. Just be sure to not lose them. :) Now I've got some emails to go answer. If I don't do that quickly, I sometimes forget that I haven't answered. Oops. Thankfully people are very understanding with me.
BTW, it's good to see you.
Thanks for the practical tips. I've always felt very well connected and supported through this site. Being somewhat anonymous on-line I feel like I can completely open up here. I've found many many people going through the same problems I am. The symptoms vary a little person to person, but we all have much in common.
Thanks again,
KJ
It's great to hear from you again too, and it's nice to be back to this site. I am still in Iraq with my job for a couple more months. Unfortunately I don't have good Internet connectivity from here so I probably won't be on line much until I get back home.
I have actually been feeling much better for the past several months. I went through a really low point about a year ago that lasted into last summer. I was really getting discouraged because it seemed like things were getting worse. The symptoms would go away for a short time but seemingly stayed a little longer each time they came back. Currently the tremors are the most noticeable problem, but for the past few days I've been having a little more problem with word-finding and stuttering.
When I get back to the States I hope to get my house sold and get the family moved to a new home in Virginia. Once that's taken care of, I really need to get the docs to take another look at my neurological problems. You recommended a neurologist to me once and I need to look up that message and try them out. I haven't had an MRI for almost a year. Maybe they can also let me try some different meds.
Yeah, the drugs. I really don't like taking any kind of medicine or even vitamins/supplements unless I have to. A couple of times I've tried to cut back on my meds to see what would happen. It hasn't been pretty. I can get by with just 80 mg of Propranolol for awhile, but eventually the shakes will come back. I can also skip a few doses of the Citalopram here and there with no problem, but if I quit completely people accuse me of being "mean" and "confrontational". I don't see it myself but I believe it.
The Propranolol makes it very hard to exercise. I take 80 mg twice a day and my heart rate really slows down. I get tired long before I can get my heart to a working range while on the treadmill.
I had some sexual issues around the time my lesions were discovered. I had both extremes, ED/anorgasmia together with unexpected arousal (reminds me of pseudobulbar affect). Shortly after starting the Citalopram and Propranolol it changed to even more frequent ED problems.
Considering the "big picture" of symptom management. It sure is frustrating that those of us who are not technically diagnosed yet can't easily get on MS drug therapy regimes. When I really thought I was losing my mind last year I would have welcomed the chance to try Rebif or Tysabri or something. Considering that some drugs may be able to slow the progression of the disease down, and considering also that you can have the disease for so long without getting a diagnosis - it just seems logical that more of us "limbolanders" should be allowed to try these treatments. Oh well, that's my little soap box.
Take care,
KJ
Thanks for the encouragement and gentle nudge. Yes, I'll be more forceful when I get back. I have been going to the VA for my treatment and tests but I also have good health insurance through my employer. I plan on going back to the VA and simultaneously going back to a recommended neurologist to see what they come up with. Lesions were found on my MRI and a short time later I had a CT scan with enhancing dye that showed one "active and bright" lesion. A lumbar puncture did not indicate any problems at all. I had a classic case of optic neuritis about four years ago but no medical records to go along with it, so the docs don't really consider that episode. Cognitive testing shows a marked deficit, but the docs feel that it could be associated with PTSD. They think my tremors are just a case of "essential tremor". They have no explanation for twitches, facial pain, heat sensitivity, bladder problem, odd sensations of cold and wet spots on my skin, etc. Strangely, the VA has rated me at 80% disabled for white matter disease, essential tremor, PTSD, reflux, and other problems but they say there's not enough to diagnose MS. Argh!
Anyway, that's my story. I'm probably not much different from so many others who visit this site and community. Not as sick as many, but not as healthy as I'd like.