MS, stroke -- now what?

[Lisa_P]

I got an MRI in March and a spinal tap in April and was finally diagnosed with MS, though it is suspected that I've had it since 1990 or 1991. I was put on Avonex within a couple weeks. I am very lucky, I guess, because there aren't that many physical symptoms right now, although this episode-- exacerbation?-- was precipitated by 3-4 weeks of blindness due to optic neuritis in January. In a way it's very liberating to know why I have had no stamina for a good 10-15 years, why I nearly faint after a bath, why -- a lot of things!!

The neuro-psych exam showed only one area of loss -- attention, concentration, and fine motor skills. That came out "low average" where everything else was superior and above average... I actually have a relatively high IQ (though I'm not a Mensa candidate). I'm told that "normal" above average is what makes the inefficiencies more noticable to me. Unfortunately, that's the one area I need to excel in as an *****istrative Assistant! I can't even type very well anymore. So I'm leaning heavily on a former "sideline" -- I got my massage therapist license last year.

The thing that is sometimes very difficult is that I can't seem to take in what someone is telling me. My vision got worse after the optic neuritis because my childhood lazy eye has returned -- which makes the whole contration thing even harder because it's hard to focus visually AND mentally... At least I didn't end up wheelchair bound.

My mom had a massive stroke in June and is slowly recovering, though she IS wheelchair-bound. I moved from Texas to Minnesota to help her with rehab, from a huge city to a dying little rural town. No job prospects and the prospect of bankruptcy looming on the horizon as I live on credit cards. Shock hasn't really set in yet. Though for the last month I've been having every bad side affect you can get with the Avonex (I assume this is stress-related)...

Mom doesn't seem to have lost her faculties and is very determined to walk again, so in spite of the stress it adds to my life, it's also an inspiration. She says its "the halt leading the blind." I know she's glad I came, but I really feel like I'm barely surving in this fog...

I want to cry out to God that it's enough already!

[Halley50]

Hi Lisa, God Bless you for being there for your mom in spite of your own health issues. My husband has brain lesions similiar to MS, but not. He will probably never return to work as a computer programmer because of fatigue and short term memory issues. We live in Minnesota too. Not small town though. Pretty close to Minneapolis. I would think your massage skills could be used anywhere. I hope you can find enough clients so you can continue to help your mom. Halley

[Lisa_P]

Thank you so much -- it really helps.

[californiasunflower]

Hi Lisa--
I understand what you are trying to sort out with regards to shouldering responsibilities while trying to function with an uncooperative mind and body.

And I also understand the spinning out of control feeling when trying to function and appear normal with unreliable vision, forgetfulness, physical limitations, and inability to concentrate but still giving a diligent and valiant try. All the while wondering what is happening. I regret that you and your mom are both experiencing these conditions that require help for each. And I'm hoping you'll be successful in acquiring a position with good pay and benefits. Your a good soul and I know that you wanted to be there helping your mom and I regret this is happening to you.

My best friend has MS. She acquired it after obtaining a law degree. She too is sharp as a whip. The medications have helped her MS plateau. She has a support group that she attends regularly. Unfortunately for her, she had to resign right away because she immediately displayed physical symptoms. Her first ones were dropping objects. She couldn't hold her pencil which is why she sought medical help. I get letters from her, calls, and when I've called, caught her cooking getting ready for Christmas guests. So that was a nice surprise for me as she loves to cook! Now I've been displaying odd symptoms with no diagnosis yet and she's been a comfort to me.

Are you really able to work with your vision? I too have had such a difficult time with the same symptoms only my tests did not reveal any MS. I too am responsible for others but unable to rise to the occassion this time, and I have always been a trooper. It is a strange and foreign experience to be taken care of but it was far worse when I had to work with these symptoms. Once the vision was affected, I just couldn't anymore. The forgetfulness has been the worst to struggle with. Hampering my lifestyle in every aspect.

I have a question for you. How are tests administered if there is low, low vision? (vision that blurs) Did you have any help with taking the test? I too have concentration problems, forgetfulness, and have a difficult time understanding what is being said. It is even more interesting when I enter the conversation. Who knows what I'll say. We have a new language that I've developed that we laugh about here!

Does your little town have any physical therapy and/or Chiropractic practices? The RPT here has CMTs. I noticed that he also trains his newly acquired staff for prepping his patients and giving them the following tasks:

taking patient to the room, giving them a gown, setting them up with the heating pads, electrical stimulator, sonogram, etc., and then having them "monitor" the patient when they are doing any weights or exercises. So you might find an employer who will take you on as a CMT, train you for other specialized duties that are light (your position would be similar to a supervisory capacity as you are monitoring). It is repetitive, which is the key to help you learn and recall the duties. This type of situation may help you with getting longer hours if you need them and can handle a full-time job. Just an FYI for you to consider.

Here in this little town, CMTs are used as many professionals and office workers like to get massages. With the hustle and bustle of today, the CMT's work calms the muscles and nerves of many a worker! They earn at least $25-$50 a session. So I wish you much success in getting started.

[Lisa_P]

Gosh... Those test were back in February or March; I don't remember any particular help with the tests, but I was there for HOURS...

Funny you should mention chiropractic. When I lived in Dallas I was seeing an intern at this chiropractic college weekly from early 2001 until I left last summer. Anyway. My last intern was really working with me regarding the MS. He said it really is in the scope of chiropractic since it is a nervous system problem or something like that. And that I should always get regular chiro care because of it. He was always so careful... I don't know what I'm saying!! Anyway. I see a chiropractor here, but it's nothing like when I was seeing Joey. There's no particular attention to symptoms other that the odd subluxation and he doesn't see me more than once a month or so. It's all very frustrating.