Been gone long time, very sick, now dx'd with *MS*/CFS/FMS

Discussion in 'Fibromyalgia Main Forum' started by Combatmedic, Jun 9, 2004.

  1. Combatmedic

    Combatmedic New Member

    I never have been a frequent poster here, but, did ocasionally throw something in, if I could help.

    April 7th I had a "balloon compression rhizotomy" for my facial nerve condition called Trigeminal Neuralgia. I have had the condition for 2+ yrs, and had been treating it with anti-convulsants, under a neurologists care. I started seeing my neurologist in April 2002 when a brain MRI came back with a 7mm lesion in an area common for MS. Seven months later, I had another lesion, in a different area, as well as the old one, and since then (Nov 2002) my MRI's have been stable, with just those two spots.

    SO.....long story short. This balloon compression rhizotomy, was hopefully going to get me off of the high dose of trileptal I was on, as the medication is affecting my blood sodium level, which can be dangerous.

    The neurosurgeon who performed the surgery did not know what she was doing, and did not have the balloon in the right place in my skull when she inflated it to crush the trigeminal nerve. Instead of pain relief, I awoke in the recovery room crying hysterically, and asking the nurse "why does my jaw hurt so bad?" "Why am I hurting so bad?"

    Since then, life has been a miserable nightmare. I am now on 2 anti-convulsants, steroids, and pain medication, and this friday, I am going to Methodist hospital to have "gamma knife surgery" or, radiosurgery, that is, I will have a metal fixator screwed to into my forehead, to keep my head stable, and have high dose radiation fired right onto the nerve, to deaden it. It is the only choice, right now, due to my age, my malignant hyperthermia(anesthesia can be fatal), and my recent diagnosis of MS (MS'ers respond a little different to some of the procedures that are available for trigeminal neuralgia, as they do with lots of things). So, while it IS radiation, it also does not require anything but local anesthesia to place the fixator on/in my forehead.......

    So, needless to say, with all that has gone on, since my root canal march 29th, then botched surgery april 7th, (and i've had 3 mri's, ekg, ct scan, x-rays, bloodwork out the wazooo) I AM FLARING SOOOO BAD!!! My celiac's is bad because i've not been able to follow my strict diet, which is mostly chicken(I cannot eat it since surgery, my left side of my face is a mess of nerve pain, and inflammation hell)

    So, I have the worst FMS/CFS/Celiac's flare I have ever had, right now, and along with the steroids causing me to eat, bloat, and sweat horribly, I think I am truly dying right now.......

    My MS is stable though! LOL

    Just had my thyroid checked because I am losing a LOT of hair, it was ok, so now we are doing a "saliva hormone test kit" to test 7 hormones....we'll see how that goes. My lymph nodes all over my neck/throat have been swollen/sore since mid-March.

    I wanted to say. I have read more than once, several people here have had MRI's with lesions, and been told it is not MS....I want to encourage them all to look further into that......especially if you are between 20-50yrs old, but really anyone, who has had lesions on an should demand to see an MS specialist. If something doesn't feel right, or you know it in your heart, keep going, pursue just doesn't sound right to me, sometimes......just get yourselves the best care.

    I have 2 lesions, I'm 26, have symptom history, brisk reflexes, and abnormal nerve test, but spinal tap was normal, so I was told it was "probably MS" for the past 25 months, until doctors at Methodist finally just said "yeah you've got MS, trigeminal neuralgia and MS go hand in hand in women your age, especially." "you have TN because you have MS". Simple as that, no...."maybe," or, "probably" or "most likely" or, "I'm fairly confident" or "we're pretty sure" which i've heard all of for 2 yrs, the neurosurgeons, and radiation oncologist just looked at my MRI's, took some history, did a neurological exam, and said, "You have MS" Not hard, didn't take long, one visit. I've been seeing my neurologist for two years, and love him to death, and he's thorough, and cautious, but, I needed to know. Now I know, and I will move on. I may see a specialist to be sure, I may not. The doctors who are treating me right now are sure, so, it's not really necessary right now. OH! AND My GP says, "Oh, 'I've had you written down as diagnosed with MS for over a year now"

    Wonder when she planned to tell me, or discuss it with me?

    *(&%#(*&%()*&#%_*&%#*@@+$+_@$+@$* DOCTORS!!!!

    Take care of yourselves, best of luck, and best of health to you all.

    Wish me luck, let's pray this procedure Friday can fix a surgeon's mistake, and that my pain will end, or at least decrease tremendously....

    Just checkin in'

  2. Combatmedic

    Combatmedic New Member

    especially for those with neuro/MRI questions/problems/lesions.......I really encourage you to not accept some of the answers I have read that they have been given here. Truly if you have lesions, of any kind, I would see an MS SPECIALIST, not just any old neurologist, to have tests run, and rule MS and other things out....
  3. TenderBlue

    TenderBlue New Member

    I wish you a perfect and successful outcome for your procedure Friday, and God bless you for your perserverance! You are an inspiration! Many people here will be praying for you. Please let us know.
  4. bjdd6069

    bjdd6069 New Member

    When I lost the vision in my right eye, the opthmologylogystist (sp?) order a MRI and they found 2 spots on my brain, and the write up from the reading person said it may be fat.... the eye doctor thought it was a stroke, the neurologyst said it was nothing, so who do I believe? Can you really have fat on your brain? Not that I am even over weight. By the way I am active it isn't like I can pick up and go see a nother doctor down the street.
    [This Message was Edited on 06/10/2004]
  5. Ceceliaskye

    Ceceliaskye New Member

    I had an MRI done a year ago, after I was dxd with cfs and fibro. I have had and still have many neurological complaints. I went to two neurologists. They both said it was nothing to worry about. maybe they were mini strokes. (maybe??) anyway the MRI report said that there were two lesions,that they could be demyelination <sp> or vasculitus. I have been worried ever since, but so far no doc has seemed overly concerned about it.
  6. redwing074

    redwing074 New Member

    How can any doctor say that a "mini stroke" or two is nothing to worry about? That is absolutely ridiculous. I bet you they wouldn't be so flippant if it were their MRI showing lesions.
  7. gypsysoul

    gypsysoul New Member

    I hope things go well for you on Friday. I went througha similar hell two years visit. But nothing like yours.
    I will say aprayer for you.

    Let us know what happens.

  8. Mikie

    Mikie Moderator

    First, let me tell you how sorry I am for all that you have been through. I will keep you in my prayers. Please keep us updated.

    Second, thanks for this valuable info. A lot of our members have written to say that docs have told them they may or may not have MS or Lupus. It is important to keep after docs until they can give definitive answers to our questions.

    God bless you.

    Love, Mikie
  9. neen85

    neen85 New Member

    Jeez Medic,most people can't even imagine the hell that can come from this illness....I will pray that you get a break from all of this and that your proceedure is a textbook case of perfection! Daneen
  10. nikd

    nikd New Member

    But remember we are here, let us know what's going on, the people on this site truly care, I will pray for you, God has gotten me through all I have been through, just hang in there and maybe soon everything will level out for you.
  11. rockyjs

    rockyjs Member


    I'm so sorry you've been through so much junk at your age. I tell people I think I was old when I was born :)

    I hope the radiation will work for you. I developed TN after a tooth extraction...the dentist injected the anesthesia directly into a vein which my doctor said could have killed me. Then he dislocated my jaw getting the tooth out.

    I have malignant hyperthermia, too, but from a condition called myotonia congenita, not the actual MH gene. My mom actually had cardiac arrest during surgery from it but they were able to revive her and she never developed a fever that I know of. Two of my daughters with MH susceptibility have had general surgery with no complications because they were very careful about all the meds and anesthetic used, but I'm always concerned about emergency situations where someone might not be alerted.

    Thanks for the advice about pursuing the diagnosis. We know I have brain lesions and probably spinal cord lesions from the symptoms, but no definitive diagnosis yet. Today my whole face is numb and so is my rear end. I get the strangest sensations all the time, a combination of the feeling that I have electical current running from my spinal cord out through my body and numbness on the surface of the skin at the same time. Hope we get some answers soon.

    Please let us know how the procedure goes. I'm praying that you'll finally get some relief.

  12. mommydoc

    mommydoc New Member

    MS.....not MS .....Pobablly .... maybe..... fairly condident... "but that is what it has said in your chart the whole time"......

    Those are things I have heard, WE ALL have heard hundreds of times! Sounds like you are on this board and you should stay! You have similar symptoms, can offer advice, especially in the neurology area, and maybe get something out of it too!

    I have seen many posts asking the question "do you think I have MS"

    OK, so i am rambling on a bit.............. sorry. Here goes:

    So Hi!
    My name is Jill.

    First of all I would like to welcome you back to the board. Even though it has only been a few mo.s that i have been using it, it has turned my emotional outlook 180 degrees!

    You have some very complicated situations going on with you right now, and right now I only hope that your visit on Fri will make you feel a lot better.

    So for Friday: G O O D L U C K !!!!!!!

    The only thing I was suprised that you did not mention having seen a rheumetologists. I do hope you have one that is managing your jaw joint pain, even that due to the root canal is still his area. They cover MS and FMS/CFS and since your case has become so complicated, I would find a GOOD one. One that talks to you and listens, not just hand out drugs.

    And all those steroids!!!!!!!!!! Ouch! You will wind up with weak adrenal glands too. I did when I had a lot of steroids. Now they do not work at all! It is called secondary adrenal insufficiency.

    Well, lets cover one or 2 problems at a time on the board, and again good luck fri.

  13. Combatmedic

    Combatmedic New Member

    I needed this. Wish I had typed a post sooner, but as you all can understand, after my surgery went wrong, April 7th, not only was I in pain, and losing weight left and right from not being able to eat from the jaw and face pain, but, I also went through theee worst depression I have ever experienced. I felt betrayed, foolish, devastated, hurt, angry, helpless, and scared for my future(of having to live this way the rest of my life, *and* still be on 4 times the medications I was on *pre-surgery!*)

    So, I have had time to deal with those emotions, and the hatred I feel towards the neurosurgeon who botched this up, and then lied, and/or covered her tracks (get this, she actually had the nerve to tell me, as if I am some dumb country bumpkin who would believe every word of it; that, "the only thing that 'failed to print' were the fluoroscopy X-rays taken during the surgery, that showed the balloon placement, and the O R report") that, "somehow, the hospitals equipment(computers) failed or crashed and "only didn't print THAT picture, and the report" yeah, right, OK doc! HOW INSULTING! So, she either lied, or she has destroyed medical records(highly illegal)

    We all know computers always have backups.

    She better hope this procedure Friday can "undo" the damage she has done to my face and skull (two areas feel like they have been hit/crushed with a baseball all the time now, I have forehead headaches all the way acrossed, that come and go, and are excrutiating and debillitating, and, nerve pain acrossed the forehead, cheek, chin, jawline, etc(like I did before surgery, only non-stop, and now I have burning with it too.) The radiation oncologist said it changed the type of trigeminal neuralgia I have from typical, to atypical, with pain all the time, no triggers, just pain all the time, and not just stabbing, shooting electrical pain, but also burning, miserable, pain as well, and pain while eating, brushing, touching my face, applying make-up takes about 3 times as long on just that side of face(and only gets done on doctors appt days) and, some nights i cannot touch that side of my face to the pillow, and have to sleep with a heating pad gently laid over my face.

    The wind, humidity, rain, are horrible. Which describes about every day of an Indiana summer, and rain describes our spring and fall as well :-O

    Well, this post has gotten too long, please read the next one, as it addresses some of you individually, and thanks you all...........

  14. Combatmedic

    Combatmedic New Member

    Gypsysoul--did you mean during a dental procedure you had experienced a trigeminal neuralgia episode, or just a nightmare of face pain(which is ENOUGH!). SO sorry. You know, I wouldn't have even had my root canal according to my dentist, had the tooth been filled correctly 3 yrs ago, at my previous dentists place.....I didn't have the heart to tell him that he has hired the same assistant that filled it at the other place. BUT I will always ask that he watch and check her work MUCH more closely. She is a wonderful and kind hearted lady, but not worth $550 mistakes!

    Bjdd6069--man I feel for you, I was stationed at Ft. LeonardWood for bootcamp in Feb 99, then Ft Sam Houston for my combatmedic/EMT training from april-july 99. National Guards. I know what you mean about not being able to just run off and go see any old doctor....I have never in my life heard of "fat" spots(????) but, if the radiologist that read it, *and* the doc said it, I suppose it could be found doing a search on the net, right? might try that, but, do I buy it? NOOOOOOO. I wish you could get to a civillian doc, way away from base, for an unbiased opinion. I'd feel better about that. Just keep as much of your records as possible, and a SYMPTOM JOURNAL, very important, when things "flare up" such as "june 10th-june 19th fingertips went numb, " or, especially if symptoms get worse in the heat, detail it well, you know, "out in the field, on such and such date, for so many hours, my vision started to fade out, or, things started to "sway" or "move in and out", etc even if you can't see a competent or concerned doctor right now, (which i really really really wish you could) eventually you will, I pray, and these types of journals, short, brief, but very detailed, will be very important. just as important as MRI results, and other tests they do. In the days before MRI's, symptoms were about all they had, or a large majority of it.. I don't buy the fat" thing, but, I'm not a doctor, just never heard of that. But, if you don't feel right about it, do all you can do, to get yourself some help, or in the meantime, gather records, and keep specific journals, PLS. May be very helpful, and very important in the future. by the way, I had only the beginnings of fibromyalgia and arthritis, pre-military. I came home very sick. Now, 5 yrs later, and 3 yrs after my honorable discharge, I have 19 diagnosis. Including MS, CFS, Fibromyalgia, Celiac's disease, (<--severe food allergies) environmental and chemical allergies, numerous digestive disorders, etc. I have 2 women, and 4 men I can think of off the top of my head, that have MS. Please don't think that I"m saying you have MS, or will ever get MS, one man was told it was GWS(gulf war syndrome), but, In my case, anyways, I know it was the beginning of the end, for me. I don't know if it was the physical activity, the heat in Texas(being out in it 12-16hrs a day), the bronchitis, pink eye, stress fractures, that I got while in, or the vaccinations, .......I will never's also my genetics...I have a cousin who was a marine, he now has a seizure disorder, and Parkinson's disease, diagnosed with both at the age of 28, he's 31 now. I have an aunt who was active duty army for 12 years, and is disabled with fibromyalgia and multiple disc problems in her neck(fell off a tank while working on it). Take care of yourself the best you can on your own, and KEEP JOURNALS

    Cecelia, two spots also, huh? What did they tell you again, about it? (CRS---cant remember sh**--sorry) I would keep looking, until a doctor DOES care, or at least tells you what it is for sure! they need to run other tests, especially when fibro gives you so many mimicking symptoms! nerve conduction tests, evoked potential tests (visual, somatosensory, etc) eeg, They at least need to schedule a follow up MRI within 6-12 months to see if there are any more spots, or any changes.....

    Mikie, I sure will update, as soon as I'm feeling well enough, procedure starts at 7am (it's 6:06pm here right now)so, 13 hrs....thank you for prayers, and thoughts, and well-wishes.

    Rockyjs---my lord, we have a lot in common, and you are correct, unfortunately, dentists need to be more aware, that they CAN CAUSE trigeminal neuralgia! Dental procedures are a common cause of TN when it's not just age related or MS related, thousands and thousands of people around the world get TN from dental procedures, and yet MY OWN DENTIST did not know how to help me, just come in to get a filling. He ended up giving me an oral sedative to take the night before, the morning of, and then nitrous oxide as well, to help me. (and it did, with my pain med, steroids, and clonopin, and trileptal!---damn that neurosurgeon! She is a horrible human being! NO remorse whatsoever. NO responsibility, or accountability.)

    What you said about your mother reminded me---my mother was given atropine at the dentists, for a surgical procedure, and she too *nearly* (but did not--thank god) but, nearly had a heart attack right there in the chair at the *dentists* office! after reading on the internet, I have found conflicting stories, but, some say that Malignant Hyperthermia patients, and family members of MH patients should not only avoid triggering agents used in anesthesia, but, should use their own judgement, or try to avoid atropine(adrenaline) at the dentist office, even, because, it can cause what happened to my mom, she was extremely short of breath, her blood pressure went sky high, she couldn't even talk with the staff, her stomach was *heaving* in and out rapidly, they thought for sure she was going to die right there in the chair! thankfully, she did not, but, they did not use that on her again, and I do not allow my dentist to give it to me. I never did know that though, until I tried to find out what might have triggered a reaction like that in my mom...

    I absolutely agree with redwing also. THey would not just dismiss 2 spots on MRI, or "possible mini-strokes(tia's) if it were THEIR spots, or their mini strokes, daggone it!

    In all your cases with the spots on MRI, I would pursue it until *I* felt satisfied. Most of my MRI reports (which are just the radiologists opinion) except the first, which said multiple sclerosis, after that, the rest always said possible vascular or ischemic cause, even though I'm 26. My neurologists opinion never wavered though, he had always said, MS was the most likely cause, that we had ruled everything else out, etc etc, but, he would not put a diagnosis on paper. So, now the docs at Methodist have done it for him.

    Jill, yes, I have been to 3 rheumatologists. For some reason, they seem resentful and bitter that "they have to treat fibromyalgia patients" and my neurologist is very up on fibromyalgia and believes in it.Moreso than the last 2 rheumatologists I've seen. The first rheumatologist dx'd me, with a "classic case of fibromyalgia" but, did not treat it (???) just prescribed doxepin, and sent me to my GP....(he was at a teaching school, but, didn't treat me?) oh well...there are very few rheumatologists in southern indiana, and I think i've seen em. I made up my mind that I don't need that kind of abuse. My aunt has RA and fibro, and begged me not to go to the 2nd one, she had been to him, and hated his guts, but, I went, and cried in the parking lot----I saw why she tried to stop me---horrible horrible, rude, little man! So, I just go to my GP, my gyno(once a year, since she doesn't care that i've had an ovarian cyst for over 4yrs now), and my neuro, and my registered dietician(<---best thing to ever happen to me regarding my health). I cancelled my appt with the urologist even. I'm trying, or was, anyways, before surgery, to quit doctors, and quit meds. I will always have to see my neuro at least every 3-6 months, and GP as needed, other than that, if this procedure works, i'm going to narrow down on the meds, stay on my supplements, and try to keep the doc appts down. I've seen over 23+ doctors and specialists in less than 4 yrs, and I'm sick of em. Insurance is sick of em, and hubby's wallet is sick of em, lol.

    Hopefully after this procedure, (PRAYING THAT IT WORKS) I can start to cut down on meds, and start getting things moving back in the RIGHT direction ..... sure hope so. I was on the way from Jan-the end of March. Lost 30lbs, to go to a size 6, digestive problems all but disappeared on celiac's diet, etc. Gonna get there again, as soon as i'm off these horrible steroids!

    Love and luck to you all, thanks so much again you all!

  15. bjdd6069

    bjdd6069 New Member

    I have a copy of every piece of paper of anything them doctors ever did to me.... I start clearing 1 DEC 04 for retirement, already started my VA paper work everything...they (the Army) is not getting away with nothing when it comes to this body, and whatever "experaments" it has done it... really I am not playing with these people if they have made me out to have to live like this the rest of my life....then they will pay for me to have to live like this the rest of my life....Thank you for the support....and hang in has to get better....pray, and pray hard, and long and loud!!!!
  16. tofusu

    tofusu New Member

    I don't understand doctor's sometimes. There are currently medications that can slow down the progression of MS. Has anyone talked to you about these? I have a friend who used Avonex for a few years before she developed an allergy. She now does a daily injectible drug that has less side effects. If no one has discussed these options with you, please see an MS specialist who keeps up with current progress.

    Hope this helps!
  17. orachel

    orachel New Member

    Just did quick search for ministoke as doc has told me to go straight to er to get cat scan. Waiting for hubby now as I cannot drive with crazy neuro action. Never had anything like this before, and scared to death. But had to say, in this crazy time of crisis right now, your post really gave me some good info re: listen to your body and demand good care. I've been telling docs husband how scared I am with worstening symptoms, but noone was worried but me as I have literally just been diagnosed with FM, and that was only a month ago...Symptoms that led to diagnosis only started in mid june! So, everyone and brother trying to convince me that all is fine and "maybe we'll do some neuro testing int the future" I'm on way to er bc doc thinks ministrokes. Btw...I just turned 30, recently happily married, and have JUST (and pretty darn quickly I thought) managed to get over pity party and really get positive about my future life, whatever my limitiations. So, lemme tell you...if I were you, and I wanted to do a major service to a lot of people...I'd repost this bit about listen to body every single week. I'm glad to have the info now, but if I had thought to search for it earlier and not listened to everyone "pooh-pooh"ing what I could feel going on in my head....maybe wouldlnb't be in this situation now.

    Wow. Thanks for post....having it to refer to in this near panic time was reeeaaaaalllly helpful.

  18. Jen102

    Jen102 New Member

    so sorry to hear of your troubles and esp that you are so young. why does it always hurt more to hear of this happening to the young?

    wanted to let you know of a treatment i have started a few months ago with some success. i am trying it for CFS/FMS etc., but many MS patients take it. It is called Naltrexone. If you google low dose naltrexone (look for the organization) then you can read about it. The idea is that it temporarily blocks the endorphin receptor sites for a few hours during the night. Then your body says--hey, we need to produce more endorphins, and kicks into gear. in some way this is supposed to boost immunity.

    i have had some improvement in symptoms, but am also doing some other treatments, so can't vouch for what role LDN plays. Many with MS says it has stopped the progression of the disease for them. a miracle for them. jen
  19. LollieBoo

    LollieBoo New Member

    I'd like to hear an update if you are still on the boards!