new rrms diagnosis, an introduction and a few questions...

[dividedskyler]

Hello All,

I am new to this community and at the suggestion of the post I just read, here's my situation:

32 y/o male, extremely active, had double vision for 3 days.  I went to the ER (where I work), they did the MRI and suspected MS.  Started me on the IV steroids, admitted me for 4 days and after a few more tests confirmed the diagnosis.  

As I look back I had been having symptoms for a few years prior, but I really didn't complain much.  In fact, since I work in the ER and deal directly with "complainers" or pill-seekers daily, I tend to ignore my own symptoms.  I told my family doc about some hip pain and digestive problems, but he told me to take some glucosomine and change my diet.  I knew something was up however b/c I'm already on the health food bandwagon and I have been active for years w/o any of these little annoyances.  Who knew.

Anyway, my questions are these:  I just started Copoxone injections and they aren't too bad, but I'm used to needles (just never on my self!).  My neuro said it may cause hypersensitivity to sunlight, but I love summer and sittin' in the beautiful sun.  Has anyone experienced this? ... don't know if I'm ready to give that up!

Also, everyone is warning me about the summer heat.  I've never been a fan, but is the summer going to knock me out of commission for 4 months?  I hope not because I live in ohio where we just lived through 6 months of overcast and I'm ready to get outdoors!

Thanks for listening and any help would be greatly appreciated.  Thanks all and it will be good

[dividedskyler]

hey thanks everyone for the warm welcome!

I wasn't sure what to think of this forum when I came across it, but you all seem extremely helpful and informative... not to mention very nice!  So I guess I'll stick around :)  And yes, its a bad thing that we all share this diagnosis but human connection is the purpose of life in the first place, right?

Thanks again everyone and you'll be seeing me around,

Skyler

[Dazyflowers]

I was looking up Copaxone and Sun Sensitivity and found your post.  - so I joined this site.

I started taking Copaxone Feb 18th this year.  I am cold sensitive and I love the sun, I lived in LA for 3 yrs because of the beach close by....Yesterday I was outside for the first time since starting the meds, I got severly burned I was outside for over 4 hours, now I am in pain, I live in Ohio as well, and worship the sun,,,,,,I guess only a couple hours at a time is what I will have to do............

[michelleric]

Welcome to the forum, although it took a dx of MS to get here...

The heat does bother me, even tonight I am having lots of blurry vision after a few hours watching my sons baseball game. For mothers day, I was given a stadium chair with a canopy.  It is pretty funny looking, but did help to keep me in the shade.

I too am on Copaxone. It still gives me some injection site issues, but at times seems to be a bit better.

Again welcome here. Many years ago, I "almost" took a job at a hospital there. I am towards Cleveland, pretty close to you.

Take care,
Michelle

[supermum_ms]

Hi and welcome,

Heat i believe is the evil little critter that hits you with the fatigue stick, and hits you hard! I'm in Australia, and we have hot and long summers, we flock to water like seagulls, creating little islands of colour where ever we can find water.lol

The summer has just ended for us here, wakeboarding was hard work and the payback was meaner, still over the moon that i could still get up, let alone wakeboard. But heat takes a lot out of you, like fighting gravity, you can still do everything you've always done but you have to be more aware of your self and find ways to compensate or adapt to the ever changing levels of what you can do. Be smart!!

I'd say there is nothing to stop you doing what you always do in summer, if you stay smart and where a hat, always use sunscreen and keep your self cool, with drinking water, shade and a swim. If you do get fatigued, you'll know it, 5 steps can feel like a marathon and you've got 10 tonn blocks of concrete hanging off your feet, get out of the heat, cool down and rest. You do need to find a balance but you dont need to stop living your life!

Cheers.........JJ



  

[tonyad]

  Hello and Welcome to the Forum..Although I am sorry for your dx.
I live in Florida.....So, I really know HEAT!  YES! for me...Heat will through me into e Pseudoexacerbation Every Time! the upside is that most of the time when your core body temp goes back down, then w/ in a few hours you will feel better. Sometimes though for me....If I get too overheated, I will be down for the next day or two.

   It is just going to be something that you will learn to take cues from your own body as to what you can handle and what you can not. It's trial and error with this crazy disease!

  Take Care,
~Tonya

[HVAC]

Welcome.


You do need the sunscreen. I burned last year because I went out with out any. Otherwise I was okay as long as I used sunscreen.

Everyone is different with heat. When we went hiking  and camping last summer. I hiked five miles then took a rest and then hiked five miles then took another rest and then did five more miles.

Alex

[sllowe]

Hi there,

Welcome!
I'm glad you started a DMD -  I'm on Rebif.
Heat does bother most, but you never know, until you know. Good thing is, if you are one affected from it, you'll know it for sure because your symptoms will ramp up.  

Cooling down usually simmers any symptoms started from heat, these are oftentimes called pseudoexacerbations, which are not attacks, just increase in symptoms from heat, or other sources that temporarily aggrevate your MS.  This does vary from person to person, but we do have lots of them in common.

Glad to have you aboard! See you around!
-Shell

[Lulu54]

Hi and welcome!  Sorry to see you join our ranks here among the diagnosed, but I hope you can keep it in perspective that there are a lot worse disease to have than MS.  And I have to say we really must consider starting an Ohio chapter because there are a lot of us here - I'm about 3 hours south of you.  

A quick dx of MS is fortunate - sometimes it can drag out for years so count yourself lucky that you got answers so fast.    I had to smile as I was reading about dismissing your symptoms as other reasons - I did the same thing for years and never thought of seeing a doctor for any of these little annoyances.

The really good news about copaxone is the recent study results from almost 20 years of use shows that it really is effective at reducing our rate of relapse.  It also has shown that after 18 years, almot 80% of its users still walk with the use of any aid (cane, wheelchair, walker).  It has also been shown of MRI to reduce the lesions we may already have.  Being on copaxone or any of the other DMD's is really important.  Mmost take almost 6 months to see a difference.

The side effects of copaxone are small but can cause problems.  The injection site pain and itch and rash may take a while to get over.  It seems the body eventually gets used to this substance being injected.  The deeper you can go with the injection, the less of a reaction you might have.  I use the autoinjector and have it set on 8-10 depending on the spot. I hope you are able to tolerate the copax and stick with it - any one of the DMD's  really is our best offensive weapon, for now.  


Sun?  Do we have sun in Ohio?  It sure hasn't seemed like it this week or month but today it appears it will be beautiful and the perfect day to catch some rays.  I don't know about the sun-sensitivity for copaxone.  It has not been mentioned to me, but I take my doses of sunshine in small bits, anyway.    Perhaps someone else here will have an answer for that.

Heat sensitivity is very common for people with MS, but it isn't a guaranteed problem.  You will learn to pace yoursself. When I get overheated (sun, exercise, etc) my legs tend to turn to jelly and it takes a while to regain the control.  The heat short circuits the pathways in our CNS that carry those messages. Fortunately this is usually tempporary.

Do you know that the dx process of MS used to be putting the patient in a tub of hot water and then seeing if they have problems?  They stopped that because sometimes the problems became permanent disabilities instead of temporary ones.  This means, though, that we really do have to stay out of hot tubs and saunas. I hate that, too.

I hope you will find lots of useful information here and that you will be a regular visitor.  Be sure and read our health pages (yellow icon, upper right side of this page) - they are all patient friendly, written by our members in easy to understand langugage and concepts.  Just about everything you want to know about MS is in these pages.

Welcome again - I'll watch for you around.

be well,
Lulu

  

[betty1973510]

well i think if there is a warning you need to stay out of the sun for a long period of time and maybe ask your doc. if there is another med that will not interfere with your summer.