HELP PLEASE...I'M NEW HERE.

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HELP PLEASE...I'M NEW HERE.

Postby sleeper1 » Tue Dec 21, 2010 10:18 am

HELP... ANY THOUGHTS? I HAVE SECONDARY PROGRESSIVE FOR ABOUT 6 YEARS AND RRMS FOR 9 YRS. BEFORE. i'VE BEEN IN A WC FOR THE PAST 6. THIS IS HAPPENING LATELY AND NEURO'SOFFICE DOESN'T SEEM TO CARE.

NUMBNESS---it swept up my legs causing a more dense numbess this past summer. This past 2 weeks it swept up both legs again and again so they feel more dead. In bed...I wake up several times needing to move but from the waist down my body is too heavy and feels dead and my arms and hands have become weaker. Its hard to feed myself. my arms don't have the strength to lift up out of my covers to pull myself over using the rails on each side. Even though I keep working on my upper body strength and my overall body weight is 160lbs and I'm 5' 8" tall.

NOW THE NUMBNESS and heaviness have gotten worse...my sacrum is dead numb, my legs are almost dead, except for the pain in the top of my thigh where the pelvis is anteriorly tilted and twisted and the hip bones are pressing hard on a nerve causing pain and each leg (mostly the left) and foot to jump with a pain surge. And I get pulsing in my feet or calves.

Do you have some thoughts on this? I called my neuro's office and ended up with the P.A.'s assistant. He was going to pull my file and have the P.A. call me. That was early last week...2 days later, after no answer from her, I called my neuro's nurse...left a voice mail and never heard anything. Now here it is Tueday and symptoms are worsening not bad enough for the ER. But haven't slept in days! Is it neuropathy...something where the nerves are being squashed near the sacrum...or just my MS getting worse every few days? End stage MS comes to mind. High level of stress for months is maybe figuring in here too. Thoughts anyone? Thank you. Snuz


SORRY FOR RAMBLING. :?: :?: :?:
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Postby koopico » Tue Dec 21, 2010 11:16 am

Sleeper,

Don't be sorry at all for "rambling!" I'm so sorry about what you're going through, and not having a supportive doctor just makes it worse.

Any chance you can go see another doctor for a second opinion? You can ask for a copy of your records from your current doctor. I know it's very hard to find the right doctor, but it seems that a second opinion is necessary!
Maybe your primary care physician can refer you to someone else? If not, you can always try Googling neurologists in your area--you might stumble upon a good doc.

I wish you luck, and keep checking back for responses--there are lots of very knowledgeable members on this forum.

Take care!
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Postby maynaka » Tue Dec 21, 2010 2:25 pm

Sleeper,

If you give us an idea of where you're located, someone will hopefully provide you with a referral.

M
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Postby ppicklee » Tue Dec 21, 2010 6:23 pm

Welcome Sleeper
I echo koopico. I can't imagine what you are going through and glad that we can all be here for you. A second opinion is always a good thing. What you think?
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New neuro...

Postby sleeper1 » Wed Dec 22, 2010 11:53 am

My neurologist is supposed to be "the best" in the state. I did see another one and he seemed less informed then anyone so I switched back.
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Re: HELP PLEASE...I'M NEW HERE.

Postby scorpion » Wed Dec 22, 2010 1:39 pm

sleeper1 wrote:HELP... ANY THOUGHTS? I HAVE SECONDARY PROGRESSIVE FOR ABOUT 6 YEARS AND RRMS FOR 9 YRS. BEFORE. i'VE BEEN IN A WC FOR THE PAST 6. THIS IS HAPPENING LATELY AND NEURO'SOFFICE DOESN'T SEEM TO CARE.

NUMBNESS---it swept up my legs causing a more dense numbess this past summer. This past 2 weeks it swept up both legs again and again so they feel more dead. In bed...I wake up several times needing to move but from the waist down my body is too heavy and feels dead and my arms and hands have become weaker. Its hard to feed myself. my arms don't have the strength to lift up out of my covers to pull myself over using the rails on each side. Even though I keep working on my upper body strength and my overall body weight is 160lbs and I'm 5' 8" tall.

NOW THE NUMBNESS and heaviness have gotten worse...my sacrum is dead numb, my legs are almost dead, except for the pain in the top of my thigh where the pelvis is anteriorly tilted and twisted and the hip bones are pressing hard on a nerve causing pain and each leg (mostly the left) and foot to jump with a pain surge. And I get pulsing in my feet or calves.

Do you have some thoughts on this? I called my neuro's office and ended up with the P.A.'s assistant. He was going to pull my file and have the P.A. call me. That was early last week...2 days later, after no answer from her, I called my neuro's nurse...left a voice mail and never heard anything. Now here it is Tueday and symptoms are worsening not bad enough for the ER. But haven't slept in days! Is it neuropathy...something where the nerves are being squashed near the sacrum...or just my MS getting worse every few days? End stage MS comes to mind. High level of stress for months is maybe figuring in here too. Thoughts anyone? Thank you. Snuz


SORRY FOR RAMBLING. :?: :?: :?:


I would keep bugging that damn doctor until someone called me!!! A phone call every hour sounds just about right. :evil: Sorry you are going through this so close to the holidays. I know you are worried about "end stage" MS but honestly I bet most of us think that way every time a new symptom appears. I personally know someone who told me 15 years ago they were going moving into end stage MS and they have not progressed at all since that point. Please keep us posted an good luck!!!
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Postby Lydia_S » Thu Dec 23, 2010 3:14 am

I am so sorry for what you are going through. I believe that if you are feeling so terrible maybe the ER isn't a bad choice than to wait around for that doctor to call you...please let us know how you are!
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Postby sleeper1 » Thu Dec 23, 2010 9:45 am

Good Morning! I had a rough couple of nights! My legs have gotten more and more numb while my spasticity/rigidity has also increased and moved up. I called the neuro's office again this morning thinking maybe steroids. But was told by my neuro's p.A.'s assistant that he would put my file on the neuros desk and see what he wants to do...MRI or IV or increase Baclofen etc., etc. Meanwhile I'm doing the "whoa as me" thing. Thanks for being here.
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Postby Lydia_S » Thu Dec 23, 2010 9:58 am

You and all of us deserve proper treatment when needed. It just makes me mad!! Hang in there...
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Hi everyone!

Postby sleeper1 » Mon Dec 27, 2010 12:38 pm

Well the never ending saga!!!!!!!!!!!!!!!!!!!!!!!! The P.A. was off for Xmas on Wednesday, her assistant called as he was leaving the office at noon on Thursday for Xmas and left the message that my file was on the neuro's desk and if I didn't here from the neuro's nurses I should call them.

They didn't call and everyone was gone early on Friday for the holiday...I went to the ER on Xmas Eve and finally got out of there at 9:30 pm with a prescription to take right away.....Do you think there was a pharmacy open on XMAS EVE??????????? UH NO, OF COURSE NOT...NOT EVEN AT THE HOSPITAL!!!!!!!!!!!! So anyway finally got the script and have not had any impovement yet. Still hoping something improves.

Guess who called at 9:30pm this morning......the neuro's assistants assistant!!!!!! Blah, blah, blah!!!!!!!!!!!

Sorry, I'm still pissed!!!!!!!!!!! :x :x :x
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Postby maynaka » Mon Dec 27, 2010 4:29 pm

Sleeper,

I am so sorry you're going through. It's bad enough to go through this anytime...but Christmas Eve in an ER??

Do you think it would help to talk to your neuro about the insensitivity of his staff?

Stay strong.

M
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HEALTH UPDATE

Postby sleeper1 » Sat Jan 01, 2011 11:20 am

I'm in day 3 of IV Solumedrol at home. No improvement so far. The pain definately increased after the first dose. Can't sleep now got 4 hrs. lastnight because of the Tylenol PM. Well, am hoping to have some improvement from here on. HAPPY NEW YEAR ALL!!!! :)
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Postby DrDiana » Sat Jan 01, 2011 6:44 pm

I'm so sorry for what you're going through.
The very best doctors are the responsive ones, IMO.
Are you having any trouble breathing? If you want immediate attention, all you have to say is that you are afraid it may be Guillain-Barre -- that will get them buzzing. If you DO have any trouble breathing, I'd head to the emergency room and ask them the same thing.
If your breathing is OK and if you are up to it, you may want to try a massage to loosen the spastic muscles -- they can cause nerve impingement, and certainly in and around the sacrum. Sometimes magnesium capsules can help, or a bath in epsum salts (pure magnesium).

I'm not above pulling out our penny jar and PAYING the kids to massage! Please keep us posted, OK?
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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