Legs Almost Gone. What Do I Do?

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Jan 26, 2007.

  1. joeb7th

    joeb7th New Member

    Ever since I got sick one year ago my legs have been weak. I developed tendinitis right away in my shoulders, arms, forearems, wrists, hands, legs and ankles. Along with this has came progressive weakness and soreness in those areas and the knees and ankles.

    Every doctor I have seen has just not said much about this. I guess they saw me walking so they figured it wasn't that bad. But just now, going to the store for one item...I noticed I could barely stand and walk at all.

    A rheumotologist did diagnose tendinitis one year ago. But the last 3 months my leg tendinitis has gotten worse and my knees and ankles and legs have gotten so weak that I have a real hard time standing in line for even 1 or 2 minutes. I have to hang on to walls and counters .


    Same thing with walking. My legs feel as if they are going to collapse. The knees and ankles feel so weak ...I mean so weak I am bracing myself for a fall. I can barely walk out to my car. My shoulders and arms are so weak too and sore I can do maybe 25% of what I used to with these also. But, please, I don't want to lose my ability to walk!

    On top of everything else this is devastating me. If I lose my ability to walk here....and this is on top of doctors not doing anything about this ...I can't tell you how horrible this all is. It is truly a scary nightmare.

    Can anyone here tell me what is happening here. I NEVER had a probem with my legs in 54 years! Then, right after I was given a 7 day dose of this powerful broad spectrum antibiotic called "levaquin"...or " The Big Gun" as it has been called, I instantly developed all these tendon and joint and I guess muscle problems. I believe it "is" the Levaquin that either caused or triggered this leg and joint and tendon deterioration.

    So who should I see? What specialist? Please don't say rheumotologist. We only have one and he has been trying to get rid of me for 6 months. I don't even go back to him any more. He was just out of internship and feels that I am exaggerating these symptoms.
    [This Message was Edited on 01/26/2007]
  2. joeb7th

    joeb7th New Member

    I just found another older post and tons of responding messages under the title...Trouble Walking?

    These are so many messages on that one post, and almost all saying the same thing? What is going on here. People losing their legs all of a sudden in a one or two year period and most have not been told why? How can this be? Why can't the doctors tell us how this is happening.

    Up until Dec.10th, 2005 I was 54 and was jumping up two and three flights of stairs 20 to 30 times a day with no problem. I was a bellman so I was also carrying anywhere from 25 to 50 lbs on top of this! I didn't have one problem with my legs!

    I just can't believe this is happening and that so many others have had the exact same problem happen to them...with no diagnosis?

    I have posted many times that I got a flu back when all this started, fainted from low electrolytes and broke my septum and went to our ER. I had the normal course of beginning bronchitis too. So that night the ER starts me on a 7 day course of the "Big Gun " broad spectrum antibiotic "Levaquin." Within twenty minutes of my first two capsules I fainted in the car on the ride home. Was given more of this the next ady and withing 18 hours of this second dose I was back in the hospital by ambulance with unbelievable all body symptoms ( nothing that I had experienced in all 3 days of the flu before this ) and feeling like I was going to die from weakness and shock actually.

    This is when I started having weakness and shaky symptoms in my legs. Immediately developed tendinitis and lost 35 lbs because every time I would try to eat it's like my body would go into shock with this life shaking weakness. I had trouble with my legs and arms and ankles and shoulders right away but assumed this would improve over time. It hasn't. One year now and I am about totally unable to walk or stand! I just cannot believe this. I also have developed in this last year, bulging disks in my back of neck area, a fractured vertebrae L-1 posterior and a torn rotator cuff right side. My leg leg is even weaker than my right and locks and drags occassionally.

    Something has devastated my entire body. I also developed bronchial asthma and sinusitis and some scarring in my left lung the last year/ Dear God...there must be a reason all this has happened in the last year. How come there is so little info on what this could all be from? Just one year...and all this has happened to me.

    I raced back to the ER twi
  3. elliespad

    elliespad Member

    I feel for you. I could have written your post, except that mine have been that bad for years! It really is alarming that they can be this bad, yet all doctors just say huh. I've had EMGs, Nerve Conduction Studies, Muscle Biopsies, MULTIPLE TIMES, nothing much turns up. Only thing they can see, (or not see), is I have no leg reflexes, not in knees or ankles. Response? Huh.

    The weakness for me is EVERYWHERE, neck, shoulders, arms, back, hips, legs, but without the legs I am beached. I know you know what I mean. I have learned SO MUCH about relieving symptoms with supplements. Can help just about anything. Anything EXCEPT the weakness. When I figure out how to help it, believe me, I will be rejoycing. And will shout it from the rooftops.
    [This Message was Edited on 01/26/2007]
  4. springlakeorphan

    springlakeorphan New Member

    Last week I posted a similar question. I think the first thing you have to find out is what exactly is going on. For me, it is 3 blown disc's in my lower back along with fibro and cfs. There is some truth to the old addage of "if you don't use it, you loose it". I was so fearful of falling, that I was one big stiff muscle. I have been doing PT and had my first cortizone injection on Thursday. That has helped tremendously.
    I saw a rummy but because I do not have RA, he was no help. Now I see a neuroligist and pain management doctor. Thae neuroligist is the most helpful and understanding of all that I am going thru. Good luck and don't give up!
  5. joeb7th

    joeb7th New Member

    I will ask my new endocrinolist to check into Lymes again. One year ago this first year Rheumy said I didn't have this.
  6. joeb7th

    joeb7th New Member

    I called The Ortho-McNeil company that manufactures levaquin to tell them I think their drug damaged me. I was connected to a lady on their consumer/product complaint line. I told her the whole story of how I was prescribed this antibiotic in the ER for a beginning case of bronchitis which was going around. She then said that the hospital shouldn't have given me Levaquin when my electrolytes were out of balance and low as they were before I was given this. And when I had an ambulance take me back to the ER withing 16 hours of my second dose and told them I felt like I was dying with so many of the symptoms you mentioned...they should have told me to stop taking this Levaquin. They never did so I took it for the full 7 day course. Now I am destroyed.

    I assume the lady on the Ortho-McNeil consumer complaint line was inferring that this already powerful antibiotic ( called "the Big Gun") has even more potential to hurt you if it is given to you when your electrolytes are out of balance as mine were. My ER doc should have known this.
  7. Bambi

    Bambi New Member

    of these law groups that file group
    law cases against medications. Even if you didn't want to get in on a lawsuit, they would no doubt have more information than we could find out about. There may be NONE going on against this drug but if it's effecting this many people it's possible that there is.

    I would personally just INSIST that my doctor look further into the side effects and come up with at least more information on what may have happened to you!! Too many doctors want to just dismiss this sort of thing. Partly because they prescribed it and partly there are just some that are LAZY.

    We are the only advocates we have unless one of these law groups pick up on something, so we HAVE to pursue things as far as we can. Good luck and I'm SO sorry this is happening to so many of you.

    It also sounds like symptoms of Post Polio Syndrome..probably far off, but you don't have to have had Polio to get it..just the vaccine! I read where African tribes are running and hiding in the bush when they hear the people are coming with Polio vaccine as they never had Polio until the vaccine started being given to them.

    We also have Polio coming back in the country with some of the new people moving into the country from other places where it was never brought under control. Worth asking about anyway. When I had it as a child the first symptom, after the pain, was NO
    reflexes in my right leg which was most effected. I hope you get to the bottom of this mystery! Love, Bambi
  8. rockyjs

    rockyjs Member

    There's a website at http://www.drugvictims.org/ which has a lot of stories from others who have been harmed by that class of antibiotic. It might be good to keep an eye on it in case a class action lawsuit develops.

    They have all kinds of links to articles about tendinitis and tendon rupture caused by quinolone antibiotics (inlcluding Levaquin).

    I would suggest seeing a physiatrist (pain specialist). They can do EMGs and coordinate physical therapy and pain management. We find them much better than neurologists or rheumatologists.

    Jan
  9. Jackie41

    Jackie41 Member

    I first developed fibro at age 26 and the leg weakness almost immediately, and I was a distance runner at one time. Two months after my last 5k run I was walking with a cane and a month after that I was using 2 canes. I was able to get by for a few months with the canes, but then switched to forearm crutches. After a few more months, the weakness went away and I only used the crutches for long distances and the 2 canes for medium distances. After that the weakness would come and go every few months and I would go from nothing to the canes to the crutches back to the canes then nothing over and over. For the last year or so the weakness has still varied but I haven't been able to get off the crutches any more and I've accepted the fact that always have to use them.

    Jackie
  10. cbs1234

    cbs1234 New Member

    Just met two other people locally who suffered severe reactions to levaquin including long term severe neuropathies and tendon damage. These reactions look a lot like FMS and CFS in their presentation. So, anyone suffering from either of these syndromes, check you medical records and see if you just happened to begin suffering during or just after a prescription of a fluoroquinolone antibiotic.

    Also, if you are planning to sue the manufacturers, good luck. It will be very, very difficult to find a lawyer willing to take the case and even harder still to win.

    Good luck.
  11. rockyjs

    rockyjs Member

    After reading this post the name Levaquin was much more memorable! This morning I opened a report from my mother's Medicare Drug Plan and found that her doctor had given her Levaquin back in May before we moved her out here.

    Right after that she began to have all kinds of trouble with her hip and could no longer walk without a walker (even a cane wasn't enough to help her keep her balance. She kept complaining about a "click" in her hip but the orthopedist said the bones were okay. Now I'm thinking the tendons got messed up and affected her ability to walk. She's also had pain in her back that had not been an issue before.

    Good grief!

    Jan
  12. cbs1234

    cbs1234 New Member

    Hope she feels better soon.

    Get the word out to friends, neighbors, etc. This drug is not for minor infections. It is a BIG to be used judiciously and for very serious infections where nothing else works. Tell people to beware before taking levaquin, cipro, avelox or any other fluroroquinolone.
  13. cbs1234

    cbs1234 New Member

    Hang in there. You will see improvement in your symptoms, but it will be slow. It's been over 5 years for me. The weakness and neuro symptoms took 18 to 24 months to subside. The tendon and joint issues still bother me in cycles of relapse and recovery. But, much better than at the end of year 1 or year 2.
    [This Message was Edited on 01/29/2007]
  14. rockgor

    rockgor Well-Known Member

    You've had so many medical problems these last few years, I'm sorry to hear that something else has developed.

    I wish I could add something to what other posters have said, but I just don't know of anything helpful.

    If it becomes necessary for you to get a some kind of vehicle such as a scooter, even temporarily, there have been posts about insurance or Medicare paying most or even all of the cost.

    Good luck to you.
  15. TKE

    TKE New Member

    My Huz had a huge long list of side effects from taking Fosamax. His gate was off, his legs became weak, etc. The list is too long to type. It took a full year for the side effects to completely go away once he stopped taking it. All he could do was wait for his system to get rid of all of it. Slowly over a full year he got better & back to normal. There are many who can take it & not have any side effects & yet many others who suffered like my Huz did.

    Hopefully yours will too. Keep records, list your side effects, doc apts, etc. You never know when you may need to pull out this info. As someone else said...don't tell any medical persons you may file legal action.

  16. roge

    roge Member

    Hang tough chief, you will need time to recover, unfortunately for severe reactions can take up to 5 years

    And I have read new symptoms can still appear as long as 2 years after the last pill. It has been 2 years for me and I am still getting new symptoms (difficulty walking some days due to the knee pain) which was NEVER a problem for me before the Tequin. This of course assuming it was the Tequin that indeed caused my deterioration and the more I research the more this is likely the case. Tequin ( a quinalone) was in fact pulled from the market this past year.

    Other theories for my deterioration and progression are viral insult (CFS I guess) or mercury from an amalgam removal. I can't see it being the latter, but one nevers know i suppose.






  17. cbs1234

    cbs1234 New Member

    I would be willing to bet that the Tequin is what got you. Did your symptoms start during or soon after your prescription? If so, hard to argue that it was the cause. Sorry that you are one of the growing ranks of Floxies out there. Hope you feel better soon.
  18. JonAnne

    JonAnne New Member

    Hang in there. My left side went numb and I thought I had MS, but it was the CFIDS. I want you to see if STRESS (emotional) makes it worse. My left side still goes numb if I get really upset over something and it is VERY REAL. My symptoms were greatly reduced after 18 months. I swear by Spirutein powder. I mean swear by it. Email me if you wanna chat. Anne
  19. lilaclover30

    lilaclover30 New Member

    My legs have been weak for about3 1/2 yrs. and I KNOW mine came from Nardil that about killed me. My leg knee is worn out but can't have it replaced as there is no one to help me and take care of hubby. I can still walk on it.

    Then after Nardil they both got weak-----I hang on to walls when I am somewhere and lean on anything when in a store. I won't shope for groceries unless I can have a motprized cart.

    I also have spinal stenosis in L2, 3, 4, 5,and 6. Pain specialist did nothing and he tried all of his types of needles.

    My feet, ankles, wrists, hands, toes, etc. all hurt and that doesn't help.

    Yes, I am 76 but I do not believe that is the cause. This all came on too quickly to be all "age". I still do what I can and sing in the choir ----I can't stagnate!!!

    Good luck to you. I have not taken that RX and don't plan to. My pharmacist tells me more that my PCP. Knows more about meds!!!

    Gentle Hugs

    Joan
  20. Catseye

    Catseye Member

    What springlateorphan said made me think of the chiropractor. Have you ever seen one? You should know right away if it will help and it's alot cheaper than a doctor. I have to go to one every 2 weeks or I feel bad. I don't have any pain, my problem has to do with the vagus nerve in my neck. It's responsible for alot of things that go on below my neck, including how I feel.

    It's cheap and it can't hurt. Wouldn't it be nice if you just needed a few adjustments like I did? I went on a lark, I didn't even think I would experience the life-changing results that I did.

    sorry, it's all I can think of

    karen