Have you had these symptoms???...

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misskate
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 9/12/2008 11:46 AM (GMT -6)   
Hi... My name is Katie and I am 28 years old... I have secondary progressive MS and I have had a flare up and I have some questions for anybody who has gone through what I am going through now...

For a little over a week my feet have been cold and clammy but I just thought they were cold. I woke up 2 days ago and I have the tingling numbing sensation that I have felt in my hands and arms many years ago. But it is different this time... My legs are stiff, my feet are cold no matter what i do but to the touch there is no temp difference, and the sensation has gotten worse and it has spread to above my hips. If I force myself I can still walk. But I can't feel where I am... I have hurt myself several times in the last few days because of this. Today I woke up and the sensation is getting stronger and I have about a 3-4" section below my knee that I have probably about 6% feeling in.. I am staying in good spirits but I am curious....

Is this what it feels like before you become paralyzed? Is there anything I can do to stop this?

Please share any info and stories..... Thank you. rolleyes

Post Edited (misskate) : 9/12/2008 12:06:01 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/12/2008 5:55 PM (GMT -6)   

Hey Kate,

It is way way past time to call your doctor!!!!  Have you reported this?  I had this the last time I flared and I was near completely numb from the knees down.  Oddly I could still walk but I could not feel the ground and it was really really hard to walk without tripping.  I had to constantly check my feet for cuts, blisters and stuff because there was just no feeling.  I do know that you can have some pretty serious sensory stuff and remain mobile.  I truly hope that is what is going on with you.  I still have quite numb feet but nowhere near like I had.  I have two toes you could probably cut off and I would not feel it.  I can still move them. Weird huh?

Good luck and let us know.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 9/12/2008 5:58 PM (GMT -6)   
Hi there Katie,
I am sorry you are going thru a tough time right now. I can not say i have had this feeling before. It maybe because of this new flair up that you are havng new symptoms. My left leg does get cold sometimes and ithink it is just due to this ugly disease. Our nerves and brain tell our bodies we are hot or cold and i guess if the electrical "current" is disrupted our bodies are tricked into thinking we are cold probably. Ths disease is so weird. Are u getting any treatment for this flair? Hopefully it will subside for you a little bit. I have RRMS so i am not to familiar with secondary progressive. Do they treat w/ steroidds when you have an exacerbation? If so, maybe your neuro can prescribe them or you. Keep the faith and good spirits. Know that we are all wishing you thoughts and prayers to ge thru this set back
Love
Lynn
Dx MS December, 2006
Started Tysabri March, 2008
Baclofen/Zanaflex Combo,
Cymbalta and Provigil


Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 9/12/2008 8:39 PM (GMT -6)   
Agreeing as usual with Gretchen- check in with your doctor- as this sounds like a big change from your previous 'norm'. I have developed really poor circulation in my feet, cold and kind of numb most of the time, Reynauds in my hands, and more recently Lividio Retic....something or other (a weird red lacey pattern that appears on my legs when they get hot). I suspected interferons causing these things, but more recently had a dermatologist (?) say that maybe my MS is causing vascular instability. I don't like that phrase. But she didn't seem concerned. I"ll see my neuro on the 6th of Oct. but if I have total numbness before then I"ll be bugging him sooner. Good luck and keep asking questions- Willow

misskate
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 9/12/2008 9:07 PM (GMT -6)   
first thank you for your responses.. its nice to know there are people out there who care and know what you are going through. it does make this disease a bit more bearable...


i spoke with my doctor's receptionist this morning... and they told me they can't see me until monday and i would have to deal with it... deal with it really?? it has gotten worse. the tingly numb pain i feel is now below my breast and i am really concerned at this point. they told me i should go to the e.r. if i don't feel it can wait until monday but the e.r here in town will do nothing for me.... i am quite disheartened at this point and i don't know what to do... i tried to walk a bit ya know try and force the sensation away like its in my head or something i can control and it hurt so bad after about 20 steps i cried.

i need a new doctor but i have to see this doc and get my paperwork filled out so i don't lose my job... i used to see a great neurologist at the marshfield clinic here in wisconsin but i moved like 6 hours away so i had to switch when my ms started to progress. i was originally dx'd with rrms in 2000 and dx'd with spms in 2007 when my mri showed that i went from seven lesions to over 50...

i have been pretty healthy despite the few bouts of vertigo, sleep paralysis and severe fatigue.. i can cope with that and treat it symptomatically but this i know needs quick response and a very aggressive treatment to stop it in its tracks. my neurologists lack of concern bothers me as well.. can i turn him in somewhere? this is not my first incident with him and i don't want him treating others the way he treats me. i will keep you all posted.

as for now it seems to be getting worse and by the grace of God i am able to walk... why i don't know....

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/12/2008 9:27 PM (GMT -6)   
Well having a unsympathetic doctor is certainly the worst!!!  I am totally so not liking your doctor or at least his witchy receptionist with her "deal with it".  That is riduculous.  The worst part is, your doctor has NO power to stop this in its tracks.  Unfortunately not even the best doctor has that power with this disesae.  When you progress, there is nothing your doc can do but treat symptoms.  I wish you the very best of luck.  Do get another doctor.  We all deserve the best treatment with the most dignity.  Keep us posted.

Gretchen       co-moderator MS board       diagnosed with MS July 2006


misskate
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 9/19/2008 12:56 AM (GMT -6)   
Update..

Going on 5th day of treatments and there doessn't seem to be much change.. I don't really know what else is going on. I don't know where to go for help... I am hopefully getting at least a loner wheel chair. But I have no ramps.. yada yada... I am hopefully going to have more info tomorrow.. And better news :-) If any of you know where in wisconsin to some aid quickly/// please let me know./.... thanks again

katie

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/19/2008 7:08 AM (GMT -6)   

Kate,

Hang in there.  I am assuming you are on the 5 day solumedrol IV infusion.  I was disappointed in how slowly that works.  I had a big flare and that soluemedrol I am sure helped but it was not a quick fix nor did I find relief from the nerve pain or the spasticity pain I was having.  I did not feel better for several weeks and I did not feel like was at my new baseline for 3 months or so.  It can take a long time depending upon the severity of the flare.

I feel for you.  Keep us posted as to how you are doing.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 9/23/2008 12:55 PM (GMT -6)   
How far into Wisconsin are you? I livein Chicago and have a great neuro. He would be about 45 minutes from Milwuakee. Email me if that would be helpful and I can give you his info.

misskate
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 9/24/2008 9:56 PM (GMT -6)   
I have finished my IV infusions and I am on the last day of the methylpredisolone pack. Still no change and no relief. I am seeing a new doctor tomorrow but he is through the same clinic. I am going to give him a chance though.

It just wouldn't be so bad if the pain would go away. And on top of it all I get very irritable when I am in pain so I am not pleasing to be around on top of everything else. I am trying really hard to pretend this isn't bothering me because people don't know what to say. And to be honest I don't know what I want them to say either. I never thought that I would really have to deal with this. I was blindsided....

I am in this state of powerlessness and I feel I have no where to turn. I never expected to feel like this or be in this much pain. And on top of it all I feel guilty as sin for taking my life up until this point for granted. And then I feel guilty for having to have all these people help me. I just feel like a huge freakin burden and its only been 3 weeks. I still have 2 more to go where doc has bed ridden me and after that mobility is limited unless the flare goes away (pray to God)

I just want you all to know whoever is reading this I don't need a response unless you want to. I am just glad I have somewhere to go where I can get out my feelings and have people understand how I may be feeling, or at least have a really good idea. I know we all cope with things differently.

I will update with news from the doctor 2mrw afternoon. Again thanks to all for your patience with me.... :-)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/24/2008 10:18 PM (GMT -6)   

Kate,

I did all that too during my last flare.  I had to have some strong pain meds even after the solumedrol.  I did not get any relief for a couple of weeks.  Tell them you are in pain.  You need some help here.  It is not at all unreasonable to expect some help with that. 

Please let us know how you are doing.  You are not alone with this.  I have had all those same feelings.  Hang in there and I hope and pray you are better real soon. 

Please post again after your appointment.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


misskate
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 10/2/2008 8:21 PM (GMT -6)   
Hey all...

So I saw the new doctor. He has only been with the clinic for less than 2 weeks and I swear to you he treated me as if I were faking as if I had a choice in what was happening to me. My step mom came with me and she was so upset with what she was hearing come from his mouth. I just got very upset and defensive. Its like these doctors have no idea what is going on...

But for the good news my flare has tamed a lot!!! turn I can feel most of my legs and I am not in as much pain. Still in pain when being mobile and trying to do daily chores but its not constant anymore... Its still frustrating because I have more energy than I have had in years and I can't do anything so that really sux but I am just sooo glad that the pain is gone. Apparently my state of mind is a bit altered when I am in pain. I am a wimp when it comes to pain, I admit it. But I promise you this... the pain was comparable to child birth...

I am having an MRI on Monday. Brain MRI with and without contrast and then a cervical and thoracic MRI. After I get my result I am switching to the MS clinic in Milwaukee. I heard they have some wonderful doctors there.. I am excited about seeing a doctor that only deals with MS.

I saw a physical therapist today. He was great and very concerned that my flares are so severe at such a young age. I told him I was diagnosed at 19 and my first flare was when I was 17. I had gotten vertigo for no reason but they treated me like a drug addict, even though all the tests came back negative for any type of drugs. They told my mom it was ideopathic.... after going to school to be an RN I learned that means they don't have a clue why it happens..

I will keep you updated on the results of the MRI. I should know by the end of next week.

Thank you all for your concern. I was really scared this time. Reality of the disease finally hit me all at once and I kinda had a melt down.

Again Thank you all smilewinkgrin

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 10/2/2008 11:20 PM (GMT -6)   

Hi Kate,

 

Wow, I’m so sorry you’ve been having such a rough time of it, and dealing with lousy neuros on top of it just adds insult to injury! That’s so great that you are starting to feel better, and also that you will be able to go to an MS clinic. I truly hope they will treat you with the kindness and respect you deserve, and be better equipped and more responsive in helping you manage your MS. Please don’t feel badly about how you reacted during this flare. I am quite sure you are no wimp! Just from this thread, it appears that you were numb and in excruciating pain, on large doses of steroids, and dealing with a less than stellar neuro and the emotional toll of the flare. Any one of these things by itself would cause most people a great deal of distress, so make sure to go easy on yourself, okay? wink Please do keep us posted on how you are doing.

 

Sunny

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