A few questions

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New Member

Date Joined Jan 2010
Total Posts : 18
   Posted 10/3/2011 5:57 PM (GMT -6)   
Hi again.  I posted on here about a month ago with a lot of symptoms I am having and you all were so kind to help me and answer a lot of questions for me.  I have lupus, but have been having some bad muscle weakness along with other horrible things that have been very new to me.  Anyway, I do finally see a neurologist this month.  I had to see other doctors for some other problems that are all probably connected, but needed to get those out of the way first.  These doctor bills will drain you quickly.
Anyway, I'm still having the muscle weakness and it's worse when trying to do such minor things.  I am still overheating badly and then the muscle weakness and shaking hits me triple fold.  I don't sleep well lately as I have leg cramps and spasms.  Anyway a few other things are really aggravating me and wondered if any of you have these same things.
Sometimes it feels like I have just stuck my foot into something wet and weird feeling, almost like wet congealed jello, and toes first and it just goes to the mid foot region.  It may last several minutes, doesn't hurt and it's not numbness.  Then all the time, it feels like there may be something stuck to the bottom of my foot, like a piece of tape or paper or whatever.  Sometimes it even feels like it is flopping when I walk, but there is nothing there.  It is about to drive me nuts!  I feel like things are crawling on my legs and nothing there, or on my hands.  Then last week, I started having this stinging pins & needles stuff between my breasts. Can't tell if it's the breast bone or just the skin, but not a deep feeling like if it were acid reflux (have that and know what that feels like).  Sometimes, if washing my hair or blow drying my hair, anything which requires me to raise my arms, it causes it to do it.  Seems like an odd thing to happen.
One last thing; the right side of my back under my shoulder blade down to about kidney area is numb.  Has been this way for many years.  When it first started, I would get these lightening bolt pains which felt like a serrated knife cutting down my back.  It would make you jump & almost scream.  Then it became completely numb.  Now it has started to do the same thing on the left side.  I also seem to be having headaches a lot more often.  They are a doozy to get rid of. 
Are these possible things that can be related to MS also?  Sometimes I feel like I am losing my mind.  Thanks to all of you for being so kind and you are all so brave and do not seem to ever complain.  I feel as though I complain an awful lot. 

New Member

Date Joined Oct 2011
Total Posts : 7
   Posted 10/5/2011 10:47 PM (GMT -6)   
You are not losing your mind.

I have a name for all you (me) are going through: WBS. Weird Body Syndrome.

I treat it best in myself by ignoring it. If that doesn't work right away, I double the dose.

Seriously though, MS is not protective against other problems/dx, so we shouldn't be quick to blame everything on MS.

I am so sorry you are going through all this. It stinks.

New Member

Date Joined Sep 2011
Total Posts : 11
   Posted 10/11/2011 8:28 PM (GMT -6)   
The cramping could be low potassium. I eat a banana a couple times a week and it helps stop my foot and hand cramps. They always hit at night .

New Member

Date Joined Jan 2010
Total Posts : 18
   Posted 10/14/2011 10:38 PM (GMT -6)   
When I had a really bad attack in June, I went to ER, because not only was my muscles extremely weak, but I had a racing heartbeat as well.  The ER doc said my potassium was normal, however I questioned that as low potassium has been a problem for me for many years.  Sometimes low and sometimes normal. Anyway, he kept telling me I needed to consider seeing a neurologist because lupus & MS is so often misdiagnosed or could possible have both.  Well, well, 3 days later back in ER because hearbeat was beating to fast again and I could do nothing to slow it down.  This time, my potassium was low.  I was admitted and went through all the cardio workups & put on potassium.  The cardiologist says there has to be a reason for my potassium to be low and she can't find it either.  I told her how hot I am all the time and the way I sweat, I can see how my potassium would be low at times.  She even got to see this in her office as that day I was burning up all day and couldn't cool off.  She decided yes, it probably was the body overheating. 
I also found that low calcium would cause a lot of my symptoms, but not overheating or the dizziness.  I should have been taking calcium anyway, but have been taking a multi vitamin, which of course being post menopausal, I should be taking a lot more.  Just hated to take more pills.  After reading about the calcium defeciency symptoms, I did get a bottle which includes "D" and I make sure I take it twice a day for a total of 1200 mgs and my multi which has 300, so getting 1500 mgs a day.  Hasn't made a difference yet, but still hoping.  Been on it a week now, so maybe to soon.  I know my vitamin D gets low because I can't be in the sun, but I have been taking a D supplement for about a year when my rheumy tested it and it was very low.
Got a call today from the neuro's office and they had a cancellation. I go Thursday, the 20th instead of waiting til mid November.  Glad about that.  I really need some answers, however I know she can't give them to me right away, going to take a little time. 
I am still having the muscle cramps, spasms and weird pains, debilitating fatigue that will not let up and of course the muscle weakness is still there.  I have problems going to my mailbox which is about 30 ft from frt door.  I also know I have really weak knees which have gotten considerably worse which would make my legs weaker, but not my arms.  I have tried so hard to rationalize this stuff and I'm just not getting anywhere.  I have not given up hope yet, though my luck has never been good, I keep thinking it has to be something different going on with my lupus or it's something simple I am missing. 
Thanks for your reply.  Any suggestions are greatly appreciated.  I can't imagine having lupus and MS too.  that's just something I don't think I could handle and like I said, I keep hoping.
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