Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
~ Calling ALL MS suffers !
Many come to this Forum looking for sx,advice , and symtpons in search of there on Experiences .. myself included , so I wanted to see if as many of you as poss. would be so kind to add alittle of your info to help others !
I have Experienced in the last 2 yrs DETERIORATING muscle weakness
amoung many other sx ,without a dx of my own yet and still in search !
I have titerted between MS and Lupus to name 2 MCTD or something witin
I find you and this forum to be one of the most Experienced with ppl of great knowledge and most kindness ... Can we please help with the unknown and pass our knowledge I'm one to be most Greatful ..
Thank you all for your Participation !!!
MOST GREATFUL ANGIE
Many come to this Forum looking for sx,advice , and symtpons in search of there on Experiences .. myself included , so I wanted to see if as many of you as poss. would be so kind to add alittle of your info to help others !
I have Experienced in the last 2 yrs DETERIORATING muscle weakness
amoung many other sx ,without a dx of my own yet and still in search !
I have titerted between MS and Lupus to name 2 MCTD or something witin
I find you and this forum to be one of the most Experienced with ppl of great knowledge and most kindness ... Can we please help with the unknown and pass our knowledge I'm one to be most Greatful ..
Thank you all for your Participation !!!
MOST GREATFUL ANGIE
However, since you mentioned MS and Lupus here is a little more information. Lupus involves multiple organ systems including your skin. So if you have Lupus and are in the SUN the chemical reaction that occurs can give you a rash. Usually a "classic" butterfly rash on nose and cheeks. Being in the sun makes your disease PROGRESS FASTER. So if you end up having Lupus STAY OUT OF THE SUN!
If you have MS then it is HEAT not necessarily the sun that makes SYMPTOMS not the disease worsen. So after coming out of the heat (1 hour to a day or so later) you should be back to what your normal is before going into the heat. So when someone is in the house with you and you have a shower bench to sit on...how do you do after being in a hot shower? If symptoms worsen put on the cold shower and stay in a while. If they get better then TELL YOUR DOCTOR about this. It is more a classic sign of MS. It is not a diagnostic test done today but this is how they used to do it and is indicative of MS. Vision problems are also very indicative of MS. If they come with bad headaches could be MS or Pituitary tumor.
Best tests to determine if it is MS is a MRI with AND without contrast for both the brain and C-Spine. Lupus uses an ANA blood test.
Other possibilities are Lyme's disease, B vitamin deficiency, heavy metal toxins overdose, brain tumor, GuillainBarr syndrome of PNS, etc
It would probably be best if you kept a diary with DATES of what symptoms you are having at what time of day. This is good for neuro and for getting disability if you need it down the road.
Best wishes to you,
EP
Angie- actually, I find that the sun helps me (Vitamin D & all that) & I have been officially dx with MS thru MRI (lesions in 2 or more places in my CNS). I don't necessarily get bothered by a hot shower- I love them! But extreme heat (80 degrees & above) can make my fatigue worse & my bad leg act up (it feels like my whole leg is asleep & waking up- pins n needles, etc. & VERY painful). In hindsight, I was showing symptoms for many years, but bc they didn't stay around for long, I blew them off. When "the big one" happened (that I couldn't blow off), it was like having a beehive in my abdomen- creepy crawling itchy burning feeling like being stung continuously by bees while they crawl around & I was misdiagnosed with shingles (they said, keep watching for a rash- which never came, of course). & then, as that month wore on, that feeling slowly moved down my left leg too (plus the tightness or "charlies", which I found out later is spasticity) & it's never been the same since!
What I have found with this damn disease is that it does whatever it wants & we're along for the roller-coaster ride from hell! It just depends on where your lesions are & how your body responds. Some symptoms go away never to return, some come & go, & some stay forever!
I have also found that the docs will test u for anything & everything else first, then MAYBE consider MS- plus, pretty much everything else can be simply tested for, whereas MS is much more involved & my first neuro (I have a new one, thank God)- I had to pretty much pull his teeth to FINALLY get him to say "Yes, it is MS"- he just kept saying "I don't want to officially call it MS, but. . .blah, blah, blah" & I kept asking him "What else could it possibly be then, I've been tested for everything!?!" & then he finally "officially" dx me!
Another thing I considered at one time (when I was trying to dx myself bc the docs were letting me down) was fibromyalgia, it shares a lot of the same symptoms, but I'm not sure how they test for that.
I hope my rant helped some- good luck with your dx- I hope u find it's something cureable! Peace n love, Leah