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Posted 9/15/2006 12:52 PM (GMT 0)

Hello all,

I have never posted a message before, this is very new to me, so forgive me if I don't know what I am doing. LOL I was reading your posts and everyone seems so welcoming. I had a postive eng test and a MRI. My doctor told me that I am in the early stages of ms. I have all the classic symptoms. pins & needles all over my body, vertigo, what isn't numb aches, heat sensitive, worst of all fatigue.I go back to the dr for the results of my evoked potential tests next week. No lp has been scheduled yet. Dr thinks its too early for anything to show up yet. I am so overwelmed with all this I don't even know what to think. I had some of these symptoms last winter but went away after a month or so. came back in May but worse. It hasn't let up at all except maybe a day here and there if anything its got worse in the last couple of weeks. I thought MS goes into remission, is there some types that doesn't? Also, dr told me to let him know how aggressive I want to be, I'm assuming  he means medication I was reading up on Avonox(?) any thought on this?

Thanks for listening

Jen

Posted 9/15/2006 3:36 PM (GMT 0)
Welcome Tia,

Im not diagnosised, but my mom has MS, and she during the cooler months is almost like she doesnt have MS.  But during the hotter months it seems to affect her, fatigue and all.  I myself became sick last July and was really bad until early fall when the temps were much lower, then poof sicker again when it got hot.  Im not sure why the heat affects MS'ers but the people I know with MS, usually have a more difficult time with the heat and sometimes extreme humidity also affects them.

Hope you start feeling better soon.

Cyndi

Posted 9/15/2006 4:56 PM (GMT 0)
Hey Jen

Welcome to the board! I'm so sorry u'r feeling bad and that the fatigue and other symptoms are getting to u so much. I've not been dx'd with ms or anything else, but if the fatigue i've experienced is ms fatigue, i can tell u i understand totally how u feel! Fortunately for me, it seems to come and go. I have many very good days. I've seen tho that if i push and go hard all day, then at the end of the day or sooner i'll be unable to go at all. I pace things. Maybe that'd be a way to handle u'rs if u'r getting any kind of reprieve at all. If u'r fatigue just stays with u, then it may be something a medication can help with. My turning point on all this came when i started using cymbalta. It seems to help so much and with most of my symptoms. There are others here who are on Avonex and the other meds available and i'm sure they'll be along soon to advise u on that, but just wanted to pop in here and say welcome and i truely hope u begin to feel better soon. Hope to hear much more from u!

rhonda
Posted 9/15/2006 7:21 PM (GMT 0)
Thanks for the replies. Has anyone tried a cooling vest? I heard they work well.

Posted 9/15/2006 7:40 PM (GMT 0)
Hey Jen

No, not tried the cooling vest, but went to the site and considered it. I will prob order one for next summer if i continue to have probs with heat. I'll try to find the thread on here that another member posted. It's got info on getting the vest and other supplies and some can be (i THINK) either discounted or free if u have a ms dx.

rhonda
Posted 9/15/2006 9:01 PM (GMT 0)
When i get too tired from the heat, i tell my husband sorry i cant help with that im too hot. Honey you'll have to do all the yard work cuz im too hot. hehehe I know I know, but hey he should do the yard work any how lol. Oh and if I forget something that i just said, or he just told me, of course he says I know its the spot on your brain huh? making your forget. We try to use some humor to make it a lil easier to swallow not know whats is making you ill. Oh and my 13yr old when i forget to give him lunch money or take him somewhere, he now says, "mom aint there a dr that can fix that spot" or "you really need to get that fixed" I just chuckle and say im doing my best on that.
Posted 9/15/2006 9:11 PM (GMT 0)
Hi Jen,

Welcome to Healing Well. I hope you find this site to be of comfort and support to you as many of us have :-) I'm sorry you are having lingering symptoms and feel so badly right now. Being in remission doesn't necessarily mean you will be free of symptoms, sometimes symptoms stick around between flares. Also things like heat, stress, and trying to do too much can play a role in how you are feeling.

There are currently several medications used to slow progression, you'll find many of us referring to them as Crabs, short for the names Copaxone, Rebif, Avonex, and Betaseron. The decision on which to take can be difficult as they all have their pros and cons. The good news is no matter which one you decide on, if it's not working or you can't tolerate it you can always switch to a different one. We do have a few members on Avonex right now and I'm sure they will be along soon to answer any questions about it you may have.

Fatigue seems to be the most troublesome symptom for most. If it's really severe you could ask your doctor about medication. Provigil works very well for fatigue for my husband.

Good luck and I hope you start to feel better, let us know how you are doing and feel free to ask any questions.

Kimber
Posted 9/15/2006 11:11 PM (GMT 0)
Welcome.........may you find strength and support from everyone here. Hope you are feeling better soon.

Blessings,
Paris Girl
Posted 9/15/2006 11:57 PM (GMT 0)
Welcome!  I am fairly new to this site, but have gotten such great help and support here that it has saved my sanity.  (What I had to begin with anyway)  I have been on Avonex since last December and I am doing really well with it.  The fatigue was still getting to me though.  I just started taking Provigil and it is like a miracle for me.  It helps with the fatigue without making you jumpy or nervous.  I was a little worried because I do have anxiety attacks, but so far so good.  Again, welcome...the people here are a wonderful source for information and support.
Posted 9/18/2006 7:17 PM (GMT 0)
Hi Jen...I am new to THIS section of Healingwell....all of this is still very new to me,and quite confusing. When I think about years that have past,I think how "normal" it has become for me not to feel well. I am always tired,that never leaves me. Another symptom that doesnt go away for me is the vertigo. This past summer has been awful...and after finally getting dx with MS I realize the heat is why summer has always been bad...omg,and to think I used to work at a drycleaners! And during that time I lost vision(for a short time) and had flashes of strobe like lights always flashing....it's like peices to a puzzle...I just hope this puzzle is complete,I dont think I could handle much more. I have decided on Copaxone for my therapy. I dont like the fact I will have to inject daily...but I think it will work best for me,with less side effects. Good luck,hope you feel better!
Posted 9/18/2006 9:35 PM (GMT 0)
wow, thank you all for the replies and support. My family is so worried about me that I don't like discussing it much with them. I feel like I have to protect them from me- crazy , huh? It's kinda fustrating. Colee, I can relate to you working in a hot place because I am a baker, which isn't good and the fact that I work 3rd shift and get maybe 6 hours sleep throughout the day doesnt help much either, But I carry the insurance for the family and since my insurance is completely paid for through the company, it's hard to leave. You said you lost vision- that had to be terrible- how long did it last?
Thanks again for the support from you all.
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