It's about time!

It's about time I write something to introduce myself!

I was diagnosed in the very beginning of 1990. It all started with vertigo, double vision, trouble swallowing, weakness on one side of my body, extreme nausea. I couldn't even stand and, after a couple of days not being able to keep even water down, I ended up in hospital.

A week, and numerous tests, later they'd managed to stabilize me enough to go home. I had an MRI before leaving the hospital, as the CAT scan didn't show anything that could help with a diagnosis. When the results came back from Boston a week later (!) the doctor decided it was MS. I went to Boston and had further tests but all they did was confirm the diagnosis of RRMS.

For the next couple of months I wore a patch over one eye because of the double vision, couldn't drive, had trouble walking and my (then) husband had to do all the cooking, since I couldn't even stand for long. By the time all the symptoms had passed and I was pretty much back to normal, we'd come to a decision. It was time to leave Massachusetts, so we headed to Arizona!

Over the next few years I had about three relapses, with different symptoms for each one. I tried Betaseron, then Copaxone, then Aubagio and finally Tecfidera, which is what I take now, along with duloxetine and modafinil. There have also been a string of other medications along the way (Amantadine, oxybutynin, tolterodine, imipramine, Dilantin, Tegretol, clonazepam, gabapentin, nortriptyline, tizanidine, Ampyra, Prozac, Wellbutrin, Zoloft, Antivert) - did someone say walking pharmacy?! :-)

For years (while I was on the Copaxone and after I came off of it) I had no relapses at all. If I overdid it with physical stuff (gardening, cleaning, etc.) I'd suffer for a couple of days with fatigue and maybe some dizziness or swallowing and balance problems. But, for the most part, I was doing great.

Then, about 2 1/2 years ago, I had another relapse - major trouble walking and lifting my legs, dizziness, pain, neuropathy in my feet/legs and hands/arms. I offered to help my mom out after my dad died, so I packed up and came back to Massachusetts. At that time, I was in such bad shape that I had to get an airport employee to push me in a wheelchair at both ends of the journey. I wondered how I was going to take care of my mother when I could hardly take care of myself!

That was then... this is now. I'm doing MUCH better, even though we've both had some problems and bouts in the hospital. I hate the humid summers and the freezing winters here, but spring and autumn provide some relief. One day I will return to Arizona, but this is where I have to be now.

Hope you've been taking notes as there will be a test on Friday! :-) :-) :-)

Anne

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20 Replies

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  • I'm glad you're better and able to care for your mother! Relapsing always sucks and an last for an awful long time.

    I went to Highschool in Phoenix (Central). I have family there however, I can't stand the heat!! It's violent to me. I actually prefer humidity and love it! Because I can't stand that type of heat (in Az), I've made VA our home. No family closer than AZ! I'm a California! Such is life!!

    It could be worse, right?

    Blessings

  • Hi Kathy! Thanks for writing.

    Yes, it 'could be worse' but I prefer not to dwell on that! 😱 I used to say (jokingly), fairly often, 'What next dear lord... locusts or plague?'

    Then I realized that every time I said it, something would happen! So I stopped saying it and I stopped wondering if, or how, it could be worse.

    I started dealing with the situation, preparing for the worst, planning for the best and trying to 'be here now'.

    But it ain't over yet!!!

    😉❤️😉❤️😉

  • Amen!

  • Ashirva, you had me belly laughing at your locusts or plague comment!!! Where would we be without a sense of humor?

  • Belly laughs are great! They're good exercise too! LOL! I don't even want to think where I'd be without my sense of humor!!! :-)

  • Love it!!!!!! Everything you have said was like my life. Except It took me four years to get this diagnosis RRMS is real for me. what is with this I have pain when I try to do any thing down for two days or more right now my right eye is in pain like it want to pop out of its socket. And Not thinking clearly thoughts get flustered.

    Katherine

  • Sounds like you're really going through it Katherine! Can you see your neurologist about the pain in your eye? That's not something you want to let go for too long, especially if it's combined with fuzzy thinking.

    Let me know how it goes and what the doc has to say! Feel better!

    Anne

  • Called the the doctor today waiting for a response from her I have let the people from Genzyme know about the issues that are going on with me they instructed me to call the Doctor to let her know what is going on thanks for being such pick me up......

  • Katherine, you did good! Please don't let this go... keep on it till you know more and something is done about it. I've found that the squeaky wheel definitely gets the grease - it might not make friends but sometimes it's good for your health - literally! :-)

    Anne

  • Thanks Anne I have made an appointment with neuro-ophthalmologist Dr. Tang, I will keep you informed ok thanks

  • YAAAAY! Dr. Tang is a good guy! Hope it goes well... let me know!

  • Well she has sent me to another eye doctor who in turn sent me back to her now she says that she no longer except my insurance Aetna PPO which I feel is not true but I will do my research to find out by calling my insurance, to see if she is still taking it so I can address this issue professionally

    Kathy

  • Hang in there Katherine! Let me know what's happening. I hate dealing with the insurance companies!!! GRRRRRRR! :-(

  • You might want to check out other insurance companies when you can especially if you might be on Obamacare. . I know that where I live Aetna Medicare advantage plans has been dropped cording to a newspaper article yesterday as one of the local insurance companies had a major hospital. It's happening in many places. I don't know that that Aetna could keep up or is getting enough patients to manage care adequately. Only my opinion. We are all at risk because insurance companies guide our expensive care and make decisions for us.

  • Ashirva, I knew that you were special! And your story confirms it. I lived in Boston for a year and the winters were too cold for my thin Southern blood!

    Take care, David

  • What were you doing in Boston? I used to love going into Boston and just hanging around. Some favorite places and memories there!

    I hear you about the thin blood... after 14 years in Arizona, I'm surprised the Massachusetts winters aren't putting me six feet under! Maybe my skin is tougher now! HAHAHAHA! :-) :-) :-)

  • I'm just curious what happens to you when it's too cold or too hot for you. I don't like either extremes but I don't think it has any effect on me because of my MS. I guess in that respect I've been pretty fortunate. As I get older I do not like the cold much but not sure I want to move. My husband does not have MS has become extremely upset with cold-weather more so than he ever did and wants to take off in February. I'm happy just to stay inside and where lots of layers. We have a child in Arizona and a sister-in-law in Florida and a daughter in California ( although I'm not a big traveler so it's a little bit too far for me as is Arizona) to visit. We had a very hot summer this year and I am someone who rarely puts on the air conditioning unless it's really really humid and stuffy. This summer it was unusualy hot and I had it on for almost the whole month of August but it was because I was just hot from outside heat not because I felt anything other than what I would consider hot weather. When the temperature would drop a bit at night we turned off the air conditioner and open the windows but I kept a lot this summer because cooling down the whole house took a long time each time I turned it back on .

  • Hi 'itasara'!

    I'm okay with dry heat (moved to AZ in 1990 - if you're not okay with dry heat it's definitely NOT the place to be) but I just can't take any amount of humidity and, the higher the temperature when it's humid, the worse I feel.

    At the same time, I also can't stand freezing temperatures - especially when there's a lot of dampness. I used to love the winters when I was a kid but I can no longer trudge in after playing in the snow, kick off all the wet clothes and sit by the fire while my mom makes me hot chocolate! LOL!

    For those two reasons (and a couple more, like high prices in MA) I moved to Arizona, where the heat is dry, the sun shines almost all the time, the winters are VERY mild and life is definitely affordable!

    Where in Arizona and California are your kids? Do they like it where they are? Florida doesn't interest me at all, because of the humidity, the alligators, the crime, the hurricanes, the mosquitoes - WOW, that's a long list! I like the fact that, in the middle of winter in AZ, I can be outside in sandals and short sleeves and look up all around me at the snow on the mountains. And if I want to throw a snowball or two, it's a short drive to the top of the mountain!

    I have no idea when I'll be back there... right now I need to be in MA to take care of my mom, so I'll be here as long as I need to be or until I'm not needed anymore!

    Stay cool, take care!

    Anne :-)

  • @Ashirva, sounds as if you've had some difficult bouts with MS. Nobody wants any of the problems MS brings but vertigo is one of the worst, IMO. It's great that you're helping with your mother and carrying on. Even after 36 years with MS, I'm still learning how to keep the symptoms from acting up. I spent a few years in the Boston area and the climate is an added challenge, to put it mildly.

  • Vertigo my new best friend ugh! I hate it. Ashirva l was in Tuscan for 2 wks visiting a friend and loved it there! The dry heat was amazing, reminded me of alaska.

    I hope your taking care of yourself also! I'm sure your doing an amazing job with your mom. But please don't forget yourself.

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