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Sunday, August 24, 2008

Darn Lucky

Today I was reading Blindbeard's latest post regarding the different types of MS and I was reminded just how lucky I am. Many of us are aware that there are four generally recognized types of MS, Relapsing-Remitting being by far the most common type. The least troublesome and ferocious being "Benign" MS. I am very lucky. When my neurologist diagnosed me after my first exacerbation, he decided to call my MS "monophasic" and benign.

Monophasic means a one time occurence often brought on by a virus. He told me that this is the general diagnoses when I person can only remember one real, serious bout with MS. In this case, they call you benign and monophasic until you have another relapse. Then you can be given an official diagnoses.

In a way this is humorous because while I was very sick, my MRI came back with lesions and he immediately diagnosed me with MS but in the followup, he wanted to call my MS a clinically isolated episode. I then asked him, "Does this mean I don't have MS?" He then glanced at my chart where he had already rendered his initial diagnoses and said, "No, I already diagnosed you with MS. Let's call it benign and monophasic for now." He also said that since I seemed much better that I did not have to take the interferons he had suggested during my first visit. I was relieved because I had already planned to tell him "thanks but no thanks" anyway.

I realize that even if my diagnoses changes again (my medical records just say MS), that I am lucky to feel as decent as I do. Was he right to offer the benign diagnoses? Time has yet to tell. After the last visit, I did remember that I had experienced two other episodes that I thought were migraines within the same year so maybe I am not monophasic after all. On the other hand, my other episodes were much shorter but they still involved intense nausea, vertigo and skull pain. I stayed in bed until my symptoms lessened but until I learned about the MS, I could not figure out why I felt so strange.

It has now been over four months since I first got really sick. It took me almost two months and a round of steroids to get over my first big exacerbation. I never felt "normal" again until about two and a half months after the relapse. Now I feel close to my baseline most of the time but there are subtle changes.

I always got tired before, but not like this. Now I am tired all the time. Even when I sleep twelve hours I am fatigued. It seems for every hour of rigorous excercise, I need to sleep three hours. I still often experience vertigo and nausea at some point during the night and early morning but the world is generally even when I stand. My vision has never gone completely back to normal and I still have blind spots and double vision at times. My balance is almost perfect again but when I am fatigued, I still stumble and wobble. Overall, I have good body control. Cognitively, I feel good but there are days when I can't remember things, get lost while driving and feel like a total moron. There are also times when I get numb spots or nerve pain but fortunately, these are few and far between.

A little over a week ago, I got nervous that I was going to have a relapse. I got the super MS fatigue, blind spots, some skull pain and some nausea. I felt like I didn't want to get up because my whole body ached. I got very concerned about whether I would be able to go back to work but when the first day rolled around, I felt better. I didn't want to write about my symptoms and jinx myself so I only told my mom. I am glad I didn't panic because now I feel ok again although of course, the fatigue never really goes away.

I have found that I feel the closest to how I felt before my illness when I am well-rested and I eat healthy. My worst times are after work, when I go to bed and when I first get up. After work I am just really sore and tired. At night, I still get muscle aches, nausea and vertigo regularly but they usually fade if I practice deep breathing. When I awake, I see very poorly but after about fifteen minutes, my vision usually clears. This is always a bit unnerving because if I can't see, I have to find a ride to work or call in. So far so good.

Despite these minor inconveniences, I am constantly reminded by reading other blogs about how lucky I am. I work full time,I don't have infusions or injections and I can do yoga. No matter what my next MRI shows, what the future holds for me with this disease or what symptoms come my way, I am blessed. When I was really sick I wondered if I would ever feel normal again. Now, I almost do.


Jen said...
This comment has been removed by the author.
Jen said...

Hi Nadja---

I also had mild MS (started very vaguely at around age 27) and I took no meds or even steroids until a little over 3 years ago. I am rebounding very well from my latest attack. It takes me forever (6-12 weeks) to get through it, do the steroids, regain my sleep, and be somewhat normal again. But I walk without a cane, I don’t have tremendous fatigue (a bit of lead limbs at times), and I only take my injections and something for my shot nerves (no pun.) My biggest issue is my left leg being a bit unsteady at times, but it’s manageable without a cane. So I don’t want you to think that MS is always a disability sentence. It can go either way, and I thank my lucky stars all the time for my pretty good overall case. But I embrace that the road could turn down the line.

PS: I'm having a technical problem getting off of people's comment pages and keep duplicating stuff, hence the "deleted comment" before this. I already defiled 2 of Blindbeard's comment pages with this problem. UGH....

Denver Refashionista said...

Thanks for the encouragement Jen. I think that my path is going to be mild (comparatively speaking) but I guess one never knows with MS. I will keep my fingers crossed that my next MRI looks good.

Shauna said...

One of the things I have noticed recently is my ability to NOT jump to the conclusion that every little thing that bothers me is related to or because of MS. Early on, all fatigue or pain or weird sensation was because of MS. But because I've been biking and active with other aspects of my life, and having common physical issues more because of my age, I sometimes forget about the MS. That comes with time I suspect, as MS is all consuming at first.

You also come to learn how to gauge how much activity your body and mind can handle.


Joan said...

Nice post - I hope you continue to hold on to this good attitude of yours!

Denver Refashionista said...

Thanks Shauna. I agree that many times when I don't feel good it is more something else than the MS. I have been going to acupuncture for female stuff and It seems to be helping a lot. Before the MS that was my chief complaint so if I can get that under control I think it will help a ton.

Denver Refashionista said...

Joan, thanks for the support.

Serina said...

off subject a bit, but a friend of mine has been telling me I should go see an acupuncturist (sp?)

Do you think it may help both your original reason for going, and the MS?

Just curious what you think.
Thanks for writing such open posts. I always love reading your blog because its always honest!