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Old 10-25-2011, 10:48 AM
 
Location: Naples
2,256 posts, read 2,546,812 times
Reputation: 3630

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About 2 weeks ago I suddenly started experience weakness/shakiness esp in my legs and my body feels like its vibrating. I'm also very fatigued. I was in the ER twice and they told me I have generalized weakness and to take valium 4x's a day (yeah right) I have an appt with a neuro but they can't get me in till Nov 2nd. I had to have my in-laws take my daughter this whole weekend as the weakness is just SO overwhelming. I esp feel it when I'm not walking if that makes sense. Could this be a nerve issue? Like a nerve in my back is causing body weakness like this? I don't have pain in my back but my GP said it can be in my lower back, to me that doesn't make sense . Any suggestions ideas? I'm really freaked out and scared I'm only 28 this can't be normal
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Old 10-25-2011, 11:10 AM
 
Location: zone 5
6,401 posts, read 5,545,865 times
Reputation: 7964
Quote:
Originally Posted by Sweetbottoms View Post
About 2 weeks ago I suddenly started experience weakness/shakiness esp in my legs and my body feels like its vibrating. I'm also very fatigued. I was in the ER twice and they told me I have generalized weakness and to take valium 4x's a day (yeah right) I have an appt with a neuro but they can't get me in till Nov 2nd. I had to have my in-laws take my daughter this whole weekend as the weakness is just SO overwhelming. I esp feel it when I'm not walking if that makes sense. Could this be a nerve issue? Like a nerve in my back is causing body weakness like this? I don't have pain in my back but my GP said it can be in my lower back, to me that doesn't make sense . Any suggestions ideas? I'm really freaked out and scared I'm only 28 this can't be normal
You can have pressure on a nerve on your back that doesn't cause pain but does cause weakness. While you're waiting to see the neurologist, doing some stretching and back strengthening exercises might help.
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Old 07-27-2014, 08:59 AM
 
2 posts, read 756 times
Reputation: 10
Quote:
Originally Posted by Sweetbottoms View Post
About 2 weeks ago I suddenly started experience weakness/shakiness esp in my legs and my body feels like its vibrating. I'm also very fatigued. I was in the ER twice and they told me I have generalized weakness and to take valium 4x's a day (yeah right) I have an appt with a neuro but they can't get me in till Nov 2nd. I had to have my in-laws take my daughter this whole weekend as the weakness is just SO overwhelming. I esp feel it when I'm not walking if that makes sense. Could this be a nerve issue? Like a nerve in my back is causing body weakness like this? I don't have pain in my back but my GP said it can be in my lower back, to me that doesn't make sense . Any suggestions ideas? I'm really freaked out and scared I'm only 28 this can't be normal
Welcome to the club! I've had similar symptoms for the past three years, and it's getting worse as time goes by. Next week I'm headed for the Cleveland Clinic, which is almost a last resort for me. Meanwhile, I've been keeping a daily record of my symptoms to share with the doctors at CC.
Here is a brief excerpt:
I have been suffering the abrupt lessening of my total energy, along with the strong and repetitive buzzing or tingling going on throughout my body - especially in my face and hands - plus the gross dizziness and utter confusion that often sets upon me like a dark shadow. And who can explain the occasional, very chilling effect, like ice cold water baths splashing through me from from head to toe? I shiver and shake from it.

All of these events occur while all other vital responses from my body have remained in a “normal” mode. I refer to the countless blood tests I've been given, urinalyses, copious x-rays, lung and heart readings, spinal taps, plus every other weird test, or “miracle” medicine a particular doctor could think of to conduct or dispense. During the past three years, I can recall some of their insistent, disquieting voices:

1. “You've had 29 "brain seizures" in three days! That's the all-time record!”
Q: “What can you do to help me?” A: “I have no idea!”

2. “These are not seizures you're having, no matter what anyone else tells you!”
Q: “What are they?” A: “I don't know!”

3. “The cause of your symptoms is an utter mystery to me!”

4. “Keep taking Zoloft! Regular doses of Zoloft will fix you right up!” It didn't!

5. “I can do nothing for you! It's simply too bizarre!”

6. “You're fine, fine! All blood tests are normal! So, go home, and be happy!”

7. “You must stop taking gabapentin! I don't care if it is helping to reduce these
strange brain events of yours.”

8. “Have you seen a good psychiatrist?” (???)

9. “Have you seen a good chiropractor!” (???)

10.“I don't have a damned clue what's wrong!” (At least he was being honest!)

11.“I think your problems are caused by the sleeping pills you've been taking!”
But my symptoms began in 2011, long before I ever started taking sleeping pills.

12.“I believe there are times when your brain is not getting enough oxygen!”
“But what can I do about it?” - “It's not my specialty!”

And finally: “I think the nerve endings in your brain are not firing correctly!”
__________________________

I must admit, there have been unpredictable periods when all associated buzzing in my body, and the other devilish symptoms have stopped, EXCEPT in my lower legs, where I've been told I have unexplained and untreated nerve damage! How this happened and why, no one seems to know, but it's getting much worse (painful) as time goes by.

When the infernal buzzing in my body has occasionally stopped, my energy has increased to a much higher level, as if a dark cloud has finally been suddenly lifted from my mind & body. I had an entire week of such feelings during mid-June of 2014.

6-19-14 – on the eighth day of freedom from these wretched symptoms, – I began suffering through a MAJOR relapse, which started in the morning, continuing throughout the day, and into the night. My energy level went way down to about five percent of normal, almost near death level, I felt. Throughout, I had very dramatic body tingling – especially in my lower face and both hands - strong chills, and great confusion. I have also had a few monstrous headaches, mainly in the front of my skull, some lasting for only a few minutes, while others continued up to half an hour. I've used an ice bag, to little effect, accept to deaden the immediate area. Taking Aleve, as my family doctor prescribed, did absolutely NOTHING to quell such events!

And so it goes! If you wish to have me share information with you after my trip to CC, send me a message. Yabbanopchick
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Old 07-27-2014, 09:25 AM
 
Location: Providence, RI
4,037 posts, read 5,444,887 times
Reputation: 2961
Have you been tested for MS?
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Old 07-30-2014, 09:16 PM
 
Location: Port Charlotte
1,975 posts, read 817,668 times
Reputation: 1808
Call the local MDA and see who their neurologist is. He-she will be among the best and will have much more experience with 'odd ones'. My neurologist is in a power chair, and has a progressive remitting/reoccurring non-specific neurological neuromuscular disorder. As do I. 30 years and counting.

Here is the bottom line for all out there. There are diseases that act like MS, but do not exhibit the lesions. Or Muscular Dystrophy mimics but not exactly the same. A lot of 'orphan' diseases. 'I don't have a clue' is what I got for decades. Everything from Epstein Barre to reoccurring polio. And try explaining that to an insurance company.

All you can do is keep 'doctor shopping' until you get one that LISTENS. One that realizes that what you have doesn't fit in a 'box', that doesn't match an insurance code. At the same time, listen to your body. Write down what is happening. Watch for hormone changes ( my body stopped generating testosterone).

Odds are you will end up managing symptoms just trying to keep on keeping on. You will need support, as depression is a very big issue. But you can get through this. Just hang in there.

Good,luk
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