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Old 07-20-2005, 04:54 AM   #1
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this is starting to get old now

the other day my husband was in so much pain in his legs and feet that he couldn't even stand for his pants legs to touch his skin. has anyone else had this problem? I can't stand seeing him in so much pain he can't sleep hardly walk lay down or set up because of the pain and he is still going to work everyday but when he gets home he is such a mess it just tears me up inside because I can't do anything to help him and our stupid Dr.'s here won't.

 
Old 07-20-2005, 05:21 AM   #2
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Re: this is starting to get old now

Mrs.Confused....yes, I have had that problem. There are times that my brain seems to perceive the lightest touch as pain. My doctors have determined that I have secondary fibromyalgia...which is often found in people with MS. The fibro kicks in as a secondary problem during exacerbations or even minor "flares."

In defense of your doctors....there is precious little they can do to help people with MS because it is a mysterious disease that affects the central nervous system and how it responds to the brain. And researchers can't take apart a living CNS or brain to do the research that they need to do to see exactly what MS is doing and how to fight it. Maybe I am just fortunate, but I have found my doctors to be every bit as frustrated as I am.

I hope you'll check in often and "vent" when you need to. My sister and I are very close and she was diagnosed with MS a number of years before me, and I have grieved watching her deal with the pain. I feel for spouses of we MS-ers...sometimes we forget that you have to make adjustments, too. Hang in there!!

 
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Old 07-20-2005, 05:38 AM   #3
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Re: this is starting to get old now

his dr. wont even test him for ms. I just dont know what to do . they wont run any test on him. all they want to do is look at him and say poor circulation. didnt even test him for that just put him on meds for it. I'm telling you sometimes I think they are just quacks here.

 
Old 07-20-2005, 05:55 AM   #4
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Re: this is starting to get old now

Have you considered changing doctors? Demand the tests! You NEED to know exactly what is going on. Peace of mind is key in battling any illness. If you know "what" you are dealing with then you are empowered to be proactive.

I have said it before: YOU - or in this case, your husband - are the CEO of your health team, NOT the doctor.

 
Old 07-20-2005, 05:58 AM   #5
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Re: this is starting to get old now

he goes back to the dr on the 28th i'm going with him he won't tell them anything or demand test but I will. thanks for your help

 
Old 07-20-2005, 06:29 AM   #6
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Re: this is starting to get old now

Let us know how that appointment goes, will you?

 
Old 07-20-2005, 07:52 AM   #7
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Re: this is starting to get old now

yep thanks alot. this is just so frustraiting

 
Old 07-20-2005, 02:42 PM   #8
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Re: this is starting to get old now

I too have had problems with my skin "hurting". It was from the middle of my thigh to my ankles. I was unable to wear anything but shorts (in Wyoming in the middle of winter.). It has happened on and off for verying lengths of times. I haven't felt it for some time and hope not to again. The very slightest touch would almost send me over the edge, but to push deep into the muscle there would not be any hurt.

 
Old 07-20-2005, 05:23 PM   #9
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Re: this is starting to get old now

sounds like him in some ways. could someone tell me up front what are the symptoms of ms. he has dizzy spells, extreme pain in his legs and feet from his knee down. he said it feels like a toothache in his big toe. he cant stand for you to touch him(Legs). now he said that his hands are starting to do the same thing. numb but with pain and he is having pains up and down his spine. the leg problems have been going on for years now. so has the dizziness. I just wish he could get a nights sleep. nothing seems to help him. and since it has been so hot and he has been working outside it has been worse. I wont even let him cut the grass so I cut it with a push mower BIG YARD. but i will be alright. just have to take it slow so i dont get my heart a pounding to bad so i wont have a heart attack( heart problems) i wont let him do anything at home anymore cause he hurts so bad.

 
Old 07-20-2005, 06:49 PM   #10
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Re: this is starting to get old now

The URL below will show you the symptoms. Best of luck.

http://www.mult-sclerosis.org/mssymptoms.html


 
Old 07-20-2005, 08:08 PM   #11
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Re: this is starting to get old now

Mrs., I have no idea how old you and Mr. are, but I know that I was extremely frustrated by the absolute trust my mother had in her doctors. I think it is important that we change our attitudes about doctors, and I tend to associate that "trust" thing with folks older than myself.
My mother never questioned her doctors, but I almost got arrested for getting in the face of some arrogant hussy (you know I meant B****!) who let mom sit in an ER for 30 hours without her medication (I finally had it brought from home and gave it to her) after telling them at check-in that she had not taken it. Sigh, long story, not MS-related, but mom died 6 months later.
This is an extreme case (and I clearly still have unresolved issues around it) but my point is, if Mr. won't lay down the law, go ahead and do it yourself. It might embarass him, but who cares? For pete's sake, even if you are heavily insured, YOU are PAYING the danged doctor! He/she WORKS for you!!! Get em, Mrs.!

 
Old 07-21-2005, 03:07 PM   #12
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Re: this is starting to get old now

my husband is 38 he will be 39 next week. I just dont know what to do anymore. he was even worse today when he came home from work. he seems to calm down a little when he gets in the air at home. but not a whole lot. i just wish the 28th would hurry up and get here

 
Old 07-21-2005, 07:34 PM   #13
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lilc HB User
Re: this is starting to get old now

Praying the next week passes quickly. Be a bulldog if you need to be. We're in your corner.

 
Old 07-21-2005, 08:53 PM   #14
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Re: this is starting to get old now

Mrs...while you're seeking a diagnosis, why not ask the doc about something for the pain? Your hubby may benefit from an anti-depressant for a while. They help calm the pain, as well help you deal with your uncertain emotions.

When my sister was dx'd with MS around 20 years ago, there were no specialized MS meds like I use today. She has used an antidepressant all this time and it has actually worked VERY well for her! He legs were the biggest problem...a GREAT deal of pain like your husband's.

 
Old 07-21-2005, 10:44 PM   #15
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Re: this is starting to get old now

Hi,
Did your husband have any kind of injury or heart problem that precipitated this pain? The reason I ask is because that amount of pain combined with skin sensitivity (allodynia) are the hallmark symptoms of Reflex Sympathetic Dystrophy (RSD), also known as Chronic Regional Pain Syndrome (CRPS). Has he ever had swelling in his legs?

Could he have a cervical disc problem? I know people with this problem that have pain in all of their limbs. Disc problems in different areas can cause extreme neuropathy.

I'm not saying it isn't MS. There's no way any of us could know that here, but your husband's symptoms are not the usual presenting symptoms of MS.

Whatever it is, I hope you find a doctor who will listen, have compassion and try to figure this out. Have you tried going to a pain management specialist? That's who I went to for my RSD and he helped me a lot.

Take care,
Julie

 
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