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Anyone have Arachnoiditis ??

Posted In: Medical Stories 10 Replies
  • Posted By: katclem
  • February 6, 2008
  • 07:03 AM

I have all the symptoms of arachnoiditis but I also have clonus at the achilles tendon. Dr's are saying that means I have MS or a brain lesion...anyone know if arachnoiditis can cause clonus? I asked Dr. today if electrolyte imbalance can cause but he said no, if high sodium can cause seizures couldn't it cause clonus? Dr. gave me medrol dose pack to take the week prior to brain scan (in case of arachnoiditis) to prevent a "flare up". Is it safe to do that way? Or should I get a definitive "no arachnoiditis" dx before proceeding with MRI of brain? Thanks:confused:

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  • I am not an expert on arachnoiditis but am in the midst of reconfirming my diagnosis. I cannot answer the question about clonus but I can tell you that it is okay to get MRI. I have done alot of research on this. The things you should NOT do before diagnosis are any things invasive to spine (ie. epidural,myleogram,surgery,spinal taps, etc.). If you DO have arachnoiditis these invasive procedures can further any scar tissue or nerve inflammation if not done perfectly. They have in some cases GIVEN people "A". Drs don't like to admit it sometimes but have you ever heard of someone having one of those procedures & the person administering it says "oops, I went alittle too far" or they had to make multiple attempts at placing an epidural and/or they caused a spinal fluid leak or a person is diagnosed with "failed back surgery syndrome"? These of course are not done intentionally but nonetheless MAY give the patient a lifetime sentence of pain. Getting the MRI & having it read by someone knowledgeable on "A" is what you need for diagnosis. A brain MRI could rule of MS which has many similar symptoms.
    Anonymous 42789 Replies
    • February 6, 2008
    • 08:25 AM
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  • Thanks for the information! I feel confident that it is not MS and that my problems are injury related. The reason I was hesitant for the brain MRI (besides being broke and no insurance) is that 1 1/2 - 2 weeks ago I had an MRI of L-spine and this past week has been ***l for me, I think the dye irritated something even though it wasn't an invasive procedure. Has anyone else experienced that?? I wish you all the best in your "reconfirmation" , thank you again for sharing. Blessings, Katherine
    katclem 14 Replies
    • February 7, 2008
    • 00:04 AM
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  • Best wishes in your search also. Yes, you probably had a reaction to the dye. Might want to mention that b/4 next MRI. Maybe a different type could be used. You might want to ask if lumber MRI noted any narrowing of spinal canal, scarring, nerve clumping or spots where it looks like nerves are "missing" called "empty sac". These are signs of Arachnoiditis.
    Anonymous 42789 Replies
    • February 7, 2008
    • 02:50 PM
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  • Thanks again. Today has been really tough. My neurosurgeon says there is no retethering, no arachnoiditis but that the clonus could be from concussion to the spinal cord when I fell. So I thought it might be my tailbone jutting forward into that nerve bundle but a highly recommended surgeon in Texas (has done hundreds of them) says no, my S/S not consistent with needing a coccygectomy. I have just subscribed to a Tethered Cord Syndrom forum and maybe I will find out that is all it is. all. Ha Ha. My surgeon made me think that once I was "untethered" all would be well, unless I retethered, but looking over the posts I don't think that is so. My GP gave me a medrol dose pack to take the week prior to the brain MRI, so I will be sure to use that even though he says no arachnoiditis. Well, need to lay down now...Thanks for your advice
    katclem 14 Replies
    • February 7, 2008
    • 11:31 PM
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  • After I delivered my daughter 4 years ago I have had severe spinal problems numbing, neuropathy seizures etc lesion in brain- they diagnosed me with MS for 2 1/2 years and then said it was not MS- we knew from the beginning it was not MS and I think I have adhesive arachnoiditis too- from what I am told you have about a 0% chance of a doctor diagnosing you with that and are usually tod you have MS or any other naturally occuring disease because most times arachnoidits is malpractice and was caused from an epidural or damage from a surgery or any other procedure. alot of times the MRI doesnt show arachnoiditis but there are things like narrowing that are suggestive of it- I can barely walk and its 4 years later and am on heavy doses of pain medication and dont know how long its before I go in a wheel chair so I hope you pursue it- I ran across some doctors on the internet if you do a search on arachnoiditis that will read your films and review your records to determine if you have it the only problem is then getting a doctor to treat you and go with that diagnosis in the long run to help you function. good luck and hope each day brings you the chance to heal
    bellasmom 9 Replies
    • February 13, 2008
    • 03:20 AM
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  • After I delivered my daughter 4 years ago I have had severe spinal problems numbing, neuropathy seizures etc lesion in brain- they diagnosed me with MS for 2 1/2 years and then said it was not MS- we knew from the beginning it was not MS and I think I have adhesive arachnoiditis too- from what I am told you have about a 0% chance of a doctor diagnosing you with that and are usually tod you have MS or any other naturally occuring disease because most times arachnoidits is malpractice and was caused from an epidural or damage from a surgery or any other procedure. alot of times the MRI doesnt show arachnoiditis but there are things like narrowing that are suggestive of it- I can barely walk and its 4 years later and am on heavy doses of pain medication and dont know how long its before I go in a wheel chair so I hope you pursue it- I ran across some doctors on the internet if you do a search on arachnoiditis that will read your films and review your records to determine if you have it the only problem is then getting a doctor to treat you and go with that diagnosis in the long run to help you function. good luck and hope each day brings you the chance to healI have adhesive arachnoiditis. I got it from surgery to remove particulary tough scar tissue after a fusion surgery. My dura was torn 9mm. I lost the blood patch within hours of returning home from the hospital. I called my Doctor to notify him that I was vomiting non stop, that I could not see sunlight and the headaches can't even be described by any words I know. He called back the next day and I told him I felt a little bit better and wasn't vomiting as much. A few days later I was really sick again and my wife called the Doc. To make a long story short he did not return my calls for 3 weeks. That was after I went to my appointment at the pain clinic and my pain Doc took one look at me and said "why in the heck aren't you in the hospital?' I explained why and he said he would take care of things and for me to reach my neurosurgeon before I left the hospital. In these 3 weeks I lost 45 pounds and looked horrible. I called the Doc whoo was in surgery and decidide to go home. They had someone wheel me down to the car with my wife with me throwing up all the way and for another 5 minutes before I could get in the car. Within a couple hours my neurosurgeon finally called me back and said he had no idea I was so bad and to get to the hospital, surgery was in the morning. What a relief when the leak was finally stopped. I did develop quite a large fistula after that which had to be drained, but I will tell you, no one was afraid to make the diagnosis when I was not getting better, but worse. My Doctor showed me the adhesive arachnoiditis on the MRI. The radiologists report said I was suffering from it and another radiologist who I had read it also said I was suffering from adhesive arachnoiditis. That was a year ago. I went through 4 clinics until I finally found a pain Physician who understands the disease. We have worked together to get me as well as I can. Right now I have a cocktail of about 15 drugs and they are working as far as my quality of life is concerned. I no longer use a walker or a cane, unless we are goingf to be out for awhile. It is now affecting my brain and mental processes. I will forget what I am talking about in the middle of a sentence, or forget a good friends name. This is the hardest part of all for me. The pain is totally under control right now without having to be knocked out from the drugs. It is so important to find a pain Doc who you can have a mutually respectful and trustworthy relationship with, because you will be seeing him/her for the rest of your life. Another thing that is so very important, but can be very hard to do is don't feel sorry for yourself or angry. I know that both of those are part of the process, but you do yourself no good being stuck there, try to find a positive space as soon as you can. I found if I look around I can find many people worse off than me. And I have lost everything and my house is about to be auctioned off in a couple of weeks. There is very little legal basis for a suit in the case of contracting this disease. Your informed consent that you sign in the hospital pretty much see's to that. But allow me to cheer you on and hope that you come to terms with the catrds you are dealt. I know, they stink, but as they say..........when you have lemons, make lemonade. I've decided to make the best ***n tasting lemonade youy ever had even though about 80% of my time is spent laying down.God Bless
    Anonymous 42789 Replies
    • November 24, 2008
    • 09:04 AM
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  • Hi Everyone,I do have Arachnoiditis, have had it since 1995 when they did a myelogram to check for any possible disc problems, which was negative, but the myelogram left me with a CSF leak, which have me the worst headache you can imagine. So I went back to ER and they did a blood patch, which is where they take blood from your arm and inject it into your spine. But what they do not tell is that blood is considered toxic to the subarachnoid space and should not injected there. Even the epidurals they do for pain control using Depo-Medrol is not to be used in or around the spine according the FDA and PDR. But it is left up to each Doctors discretion, which is not fair, because they could care less how many people they permanently disable, as long as that money keeps rolling in. Before I was diagnosed with Arachnoiditis I was given 13 epidurals for pain control, some done under flouroscopy, but most of them were not. A few of them even turned out to be wet taps, which only progressed my Arachnoiditis even further. In Aug 97 they did an MRI to check for disc involvement once more before sending me to Joliet for a myeloscopy. The MRI was negative. I never recovered from that myeloscopy. I went from working full time as a nurse, and using one Darvocet per day for pain to not working at all, being told I will never work again, being put on Morphine, and having two Spinal Cord Stimulators implanted, and finally having my Intrathecal Morphine Pump implanted. This disease is terribly underdiagnosed due to the fact the Doctors themselves are the ones who cause it, meaning it is Iaotrengenic. Not only is it under diagnosed, but for those of us who suffer daily from the agony it causes, we have trouble from the medical community and many of us get labeled as drug seekers, when the only thing we are seeking is some relief from the never ending pain Arachnoiditis causes, not to mention all the other symptoms, such as headaches, urinary trouble, bowel trouble, sexual dysfunction, sweating, fevers, trouble swallowing, tremors, myoclonic jerking, Fibromyalgia, Arnold-Chiari Malformation, and this list goes on and on. The best article ever written on the subject of Arachnoiditis was written by Dr. Sarah Smith, from the UK, entitled "The Adhesive Arachnoiditis Syndrome" and can be found on the internet, as well as "The Intractable Pain Patient's Handbook for Survival" by Dr. Forrest Tennant which can also be found on the internet. If you or someone you know suffers from Arachnoiditis these are both must haves for yourselves and for you treating Doctors knowledge. Good luck to any and all who are unlucky like me and end up with this hideous disease. ;)
    AliBaby64 1 Replies
    • February 2, 2011
    • 01:07 PM
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  • I had an MRI and it said I have clumping of nerves then a few years later I had an MRI that said I had Arachnoiditis and recently I had another MRI and the radiologist didn't mention A at all but I still have the pain and some of the other symptoms of A what is he missing?
    Anonymous 42789 Replies Flag this Response
  • I have all the symptoms of arachnoiditis but I also have clonus at the achilles tendon. Dr's are saying that means I have MS or a brain lesion...anyone know if arachnoiditis can cause clonus? I asked Dr. today if electrolyte imbalance can cause but he said no, if high sodium can cause seizures couldn't it cause clonus? Dr. gave me medrol dose pack to take the week prior to brain scan (in case of arachnoiditis) to prevent a "flare up". Is it safe to do that way? Or should I get a definitive "no arachnoiditis" dx before proceeding with MRI of brain? Thanks:confused:I was diagnosed with Arachnoiditis in March of this year. Any questions, feel free to ask. Here is my story:http://arachnoiditis.co.uk/index.php/stories/55-geri-s-story
    ArachGirl422 1 Replies Flag this Response
  • deezb51 It's funny that you said that the Doctor might say this, "oops, I went alittle too far". Because in my case, He said Exactly,"Oops, Too Far!", after my body spasmed and almost landed on the floor from the needle hitting my spinal cord nerves.I was later diagnosed with Adhesive Arachnoiditis, but it was by a Specialist that was NOT the same doctor who had done the Epidural Steroid Injections and Goofed Up the last one with his famous Quote. I now plan to have that written on my Tombstone, "Oops, Too Far!"I've been dealing with this now for almost 10 years, and with it's slow progression (in MY case - each is different) I don't know how much longer I'll be needing to deal with it...Curse or Blessing, I'm not sure.Arachnoiditis is truly a cope with it minute by minute, hour by hour, day by day, Injury! Illness, nor Disease are the Proper Terms for this.Those two words absolve the Doctors of their role in it, but 'Injury' keeps their part right where it belongs. Up front so when people ask How I "Injured" my back, I tell them that a Doctor Misplaced The Needle while doing an Epidural Steroid Injection. If I call it an Illness or Disease, they simply think...."I caught it. ..somehow'...NOT!!! And that is very important if Arachnoiditis is EVER going to be known for the living nightmare it puts it's victims through! It's an INJURY!!!
    richteas 1 Replies
    • January 8, 2013
    • 07:12 AM
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