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3rd time in a year an a half... MS/ALS - check - clear!!!

Aviatrix36440Aviatrix36440 Posts: 5,904
Okay, first off "should" one of these issues come to fruition, MS I would pick, as ALS is fatal, period. Okay, surgery is still on track, but once AGAIN I am getting tested (thank you bloody myelopathy) for MS or ALS. I DON'T need this stress right now, I really don't (tears)...I try to stay strong, and me 99.9 percent sure neither applies, but damn.... I try to pride myself on being pretty dag-gum strong and fussy...but (crap) 3rd time down this road in less than a year and a half?!?!?!? So Tuesday (b-day) Brain MRI and Spinal tap - yummy....

MS I can deal with. A dear friend of mine... 25+ years, and you would never know... another ALS, gone shortly after diagnosis...(hence why I think they are off the box with me). It (sniff..stress) gets frustrating when you are trying to get your pre op testing done, and once again MS/ALS is tossed back into the testing mix. I have so many Dr appts., next week, I don't know if I am coming or going!!! This has to be the crappiest birthday in my life!!! Sigh... Sorry, not happy....This just so sux!!!!!

In Alexhurtings now famous terms... Get-er-done....sheesh...sniff...grr...(not happy right now....)

PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.


  • You have never mentioned this before to the best of my recollection. You have been so strong, and such an up-beat positive role model that I am blown away by your post. I cannot imagine what you are thinking/ feeling right now, but, please know, that happy birthday wishes are being sent to you from me, and I am sure by tons of your fans on this site. Who knows, maybe you will get a b-day surprise and not have either MS or ALS. I am hoping it is neither and that you just have to deal with the cruddy upcoming surgery!!! Now in retrospect, wouldn't that be a great gift?

    You are in my thoughts and I am hoping you are pleasantly surprised!!! Then try to do one nice thing for your birthday, like a manicure pedicure, massage, facial etc. Something to just let you relax and enjoy your day.
  • Hugs to Brenda >:D<

    This is really to much stress for you to handle. You know I was tested for MS last year (I was worried sick) but it was negative (after a some what positive brain mri).

    I bet dollars to donuts they are both neg. The meylopathy is probably all from the mess in your spine. What are the chances that you would be struck wiith a life long battle of Super Spine and a terrible disease at the same time? I am sure the doctor is just ruling things out and billing insurance $$$....

    We had a family member that got very sick very fast with ALS. He has been gone for several years. And I know a few people with MS (can get bad quick but most varieties are easily controlled with meds) as I am sure you are aware.

    Try to rest tonight :) things will look better tomorrow...

    Julie aka Super Spine Girl (able to leap small stairs in a very slow fashion)... trying to humor you.
  • Natalie,

    You weren't a member back the last 2 times this came up, but yeah, ....testing came up, but more "trouble shooting" vs "possible diagnostic" if that makes sense? My last two, EMGS, exam and MRI was good... this time more in depth.. Brain MRI, (blood - done), muscle and nerve(ouch) biopsy, and spinal..yummy. The myelopathy is what got my surgeon into "more" testing and specifically the MS or ALS side of the house. Trying to keep a sense of humor with him, "Doc, if I have a choice of course, MS please..." He knew I felt the urgency, severance and stress with that comment?!?

    Double, triple...grrr...sigh....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Howdy woman!!!

    Nodding, I was NOT thrilled today (err regular sleep people - yesterday) when my OS decided to check these "issues..." I think he saw the pain in my face (even though I thought I covered it pretty well). I agree, I still feel that chances are very slim on these "problems" being an issue...it just stings pretty darn hard - especially when a fairly large (ouch) surgery is on the horizon..... :)

    Grrrrr..... (sorry, left overs.....)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • coming your way from me as well. Sorry that you are going through so much right now. Not enough that you have your upcoming surgery on your mind, they add this to the pot.

    Your doctor sounds like a very thorough doctor, so thinking that he is hopefully covering all the bases and crossing his T's and dotting his i's.

    Your previous testing, did anything come up that raised any red flags?

    I agree with Natalie, you need to go and doing something extra special for yourself, you definately deserve it. You will be in my thoughts and prayers as you go through your testing.

    Big but gentle >:D< 's coming your way!

    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    We all hope that we get Dr House .... and usually wind up with Dr. Seuss or Dr. Dolittle .... Sounds like this time you actually got Dr. House!!

    Check out this check out that - Rule out this rule out that ... and maybe we can come up with a final diagnosis.

    Whats the old saying ... becareful for what you wish for? In your case you wanted-needed a doctor that would look at the big picture and finally address
    what was missed by so many of your "professionals".

    I know it bites but go with the program ... you have been tested and declared neg on these potential problems before .... They are just doing their due (or do do) dilegence. Also known as CYA (Cover your Asx medicine).

    Don't even allow yourself to get spun up on the potential of a positive test at this point ... been tested and neg in the past ... concentrate on the known issues .... they are plenty enough on their own!!

    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • Sorry to hear you're being tested again. Honestly how many times a year do you need to be tested? Just wanted to say you're getting the works done to rule out everything and wish I could find a Dr. so thorough though. It's hard enough to be getting ready for surgery when they're doing testing. I think one lumbar puncture a year would be enough for me. Brain MRI doesn't hurt though. With all these tests you may need something to relax yourself. I hope you have all you need for your surgery ready. Praying you feel more relaxed as the day of surgery approaches. I wouldn't know how I would be with a 5 level surgery. Hugs. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • SavageSavage United StatesPosts: 5,427
    Sorry for all you're going through.
    Your in my thoughts and prayers!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • This is yet more for you to deal with, when your plate is already full. I wish I could hug it all better for you >:D< >:D< >:D<

    People are right though, at least your doctor is being very thorough. Better to have all information available than to get a shock and find that the surgery wasn't what was needed.

    Try to think of these tests as just more pre-op testing.

    Can you celebrate your birthday on Monday (for instance)? Make it a celebration of the last day of being 21 (that is your age, isn't it?) rather than being 22.

    Soon you will be able to tick the box for all this pre-testing and then just get on with the surgery!

    Brenda, we are here, cheering you on and wishing there was more that we could do for you.
    Let us know how you get on.
    Have a great day tomorrow and Monday.

    There will be an end to this very rocky and long road. >:D<

  • Thanks very much for the hugs, as they are very welcome!! :)

    I had to have my pity party, now I am in a better frame of mind. Tomorrow I finish the cardiology side of the house (echo and stress test). Not too worried about that. MRI and tap on Tuesday, GP and OS on Wednesday... full dance card! (G)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Dave,

    I feel I too found "Dr. House" on this go around! Check this out. The radiologist that read my MRI and wrote the report (same doctor also did the CT) MISSED the pseudo! Incredible!!! My OS smiled as he read the report, and then stated... "This is why I don't even read them. I look at the imaging and decide on what is going on." Hehehe

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • When I step back and look at the whole picture, I am very fortunate to have found this surgeon - and yes he is very thorough. Because of him I adopted a new cardiologist too! I know this is all for the best for me, it just gets frustrating.

    Thanks very much for the hugz - always appreciated!! I've had spinal taps before, so pretty much know what to expect there. As for the MRI, I think now I can safely say I've had MRI's on every part of my body except my lower legs! (G)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • @Savage, thanks very much for your thoughts and prayers. :)


    Howdy woman!! Yeah, my brain is getting wrapped around things better now. I had to have my little melt down! (G) At least I will be able to show the hubby proof of gray matter up there! I was reading on another site of a woman who too they had get a brain MRI, and they found a tumor! Surgery got it out, and it was benign - that that wasn't what the scan was for, but found that!!

    I guess I'll see on Tuesday, and the Neurologist will tell me more after the other tests. Just have the MRI and spinal tap to go on this round. I think this will be the 'deepest' physical I've had in years!!! Surgery is staying on the table regardless due to instability and failed fusion, these other tests are to see how effective the surgery will/might be on resolving some of the nerve issues. My OS is still leaning towards Myelopathy as what is going on, but making sure....

    Now my b-day (Tuesday) also marks a month as an 'ex-smoker'... :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • yah, i hear you. when it rains it pours sometimes. as if you don't have enough to deal with! i too had a brain MRI to rule out MS, and here in canada i had to wait 3 weeks for the results! talk about soiling my pants! the waiting just about turned my hair grey .... nonetheless we still have great health care in canada. it's great not to have to fork out $2,000 for an MRI out of our own pockets. i REALLY feel for you guys in the US who don't have (reasonable) health care 'cause it's just too expensive. it sounds like a case of the "have" and the "have nots" there.
  • Ruth,

    Don't let the news confuse you too much on how health care is down here. Some of the have nots get better attention then us "haves."

    I went through a full neurological exam and he doesn't see the 'markers' by my bodies reaction for ALS, or MS, but...Next week Brain MRI with GAD, then next week for:

    Evoked Potentials, visual evoked potentials, brainstem auditory-evoked potentials, somatosenory evoked potentials ....whew! The following week and NCS/EMG all extremities and full spine. That should fully rule "in" or rule "out" brain related neurological issues.

    He too is 90% that with all the moving in my vertebra of my neck, I have myelopathy from it. Oddly, I will take that as good news if indeed it is that and not that other nasty stuff!! (G)

    Cardio and nuclear testing went great, pulmonary is next week, and GP clearance after that. Surgery still on track health wise and insurance wise. Whew! All I will know is I will know more about my nervous system than I ever thought I would!! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I've been following your stuff and hoping that somehow you will dodge this bullet of needing a 5 level. It sounds like the MS thing will likely be okay. My surgeon had me do an MS workup just to make sure we weren't missing anything. the brain MRI was just fine for me, so hopefully the same thing will be okay for you.

    What symptoms are they diagnosing the myelopathy with? What test? I'm curious as to why you are not in a cervical collar if you are having movement/instability in your neck. It seems to me that would be very unsafe to walk around with movement. What did you doctor suggest about collars? I'm just concerned for you. Let me know please.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Neck of Steel Cindy said:
    I've been following your stuff and hoping that somehow you will dodge this bullet of needing a 5 level. It sounds like the MS thing will likely be okay. My surgeon had me do an MS workup just to make sure we weren't missing anything. the brain MRI was just fine for me, so hopefully the same thing will be okay for you.

    What symptoms are they diagnosing the myelopathy with? What test? I'm curious as to why you are not in a cervical collar if you are having movement/instability in your neck. It seems to me that would be very unsafe to walk around with movement. What did you doctor suggest about collars? I'm just concerned for you. Let me know please.
    Howdy Cindy,

    The MS/ALS business has come up a few times, so now that I am "understanding" what they are looking at and why, I am now seeing it as a better neurological "look" than I got in the past - and that's a good thing for me!! :)

    Collar. My hubby and I too had the same question. I was told that "general movement" won't fail my neck, and at this stage (sedentary that I am), he isn't going to push a collar. He added that a car accident, collar or none, the result given the levels would be the same - I would most likely break my neck. Yeah...yummy.

    Myelopathy - mix. Physical exam, MRI's, EMG's/NCVs and now doing another which includes the full spinal, and too the testing of the full cord itself. This test I've not had in the past, so I am rather intrigued by it - I get that one next week (Monday). Apparently there is an electrical study that can test the cord itself and see if there is specific damage. The tap wasn't very revealing sadly...

    This Neurologist (specializes in MS/ALS and nerve damage - neuropathy and myelopathy) doesn't see a way out of 5 levels either [kind of an unofficial 7th surgical input I guess?]. He (like me) is hoping when they get in there, no more are added!!! Argh..!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Oops.. missed the symptoms questions. I've had issues in my legs, bladder and bowels for some time, symptoms of which my present surgeon (and this Neurologist feels similar) don't match the amount of hernia issues in my upper lumbar, and stenosis in my L5/S1 - hence the feeling much of the leg weakness is from the neck. Sorry, missed that....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Thinking of you >:D<

    This surgeon is certainly being extremely thorough! That is a good thing. You want to be sure of exactly what is going on, and with all the testing you are having, that should become evident.

    I will be very interested to see if the evoked potential testing is what shows up any cord damage that you may have. As you know, I am a puzzle as to what is causing my leg symptoms. I wish my neurosurgeon would order all the tests needed to decide what level/s are producing my symptoms. He just seems to do one test at a time, with months of waiting for the next test. Very frustrating!

    How are you getting on as an ex-smoker?

    >:D< >:D< >:D<

  • Howdy Ms. Jelly,

    Monday should be an interesting day. It also works out well in that the Neurologist is doing the test, so I can report directly to my OS that afternoon (another pre surgical appt.) what the odds are of MS/ALS etc.

    A full NCS/EMG can also detect myelopathy, but to what level I don't know. Most of these tests on Monday are going to be new to me, so my curiosity is getting up there. The "cord specific" one for sure! This Neurologist is great for explaining things as he goes along, so I will be sure to keep my ears open for which specific test is for the cord - so I can for sure pass that to you.

    Still happily non (ex) smoking here. Don't even miss them. :) I am now formally feeling improvements vs just seeing some.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda,

    Although new here........

    I just want to wish you the very best and to let you know I am bumping up the prayers for you. You have lots ahead of you but I will hope you hear some very good news in regard to it all. Congrats on being an exsmoker! It can only help you in the days ahead.


  • New or old, we are all family here as you may now see. :)

    Thanks very much for your thoughts and prayers, they are appreciated. *HUGZ* As for smoking (lack there of), what is good now is when I get an urge, I know it is in my head as the physical is long gone.... :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • It will help with your surgery I'm sure. Certainly can't hurt.

    I quit way back in 1985 but still dream about smoking. LOL.
  • Brenda, I was suspected of having MS in 2001.
    I had test after test and nothing was ever conclusive.

    I clearly had a serious neurological condition as my muscles were becoming weaker by the day, positive babinski etc, spasms, memory loss, then loss of bladder/bowel control, foot drop,terrible shooting pains, numbness and so on.

    Eventually it was decided I had an agressive form of MS (which I have since discovered is a catchall diagnosis when everything else has been ruled out) even though there was no tell tale evidence of lesions.

    I went into hospital on April 2nd 2003, unable to walk, to have IV steroid treatment to "boost me up" and to be evaluated for "interferon B" drug trials.

    It was there, almost by accident, that it was discovered that my problems were entirely caused by a herniated thoracic disc.

    My thoracic spine was one of the few places that wasn't especially painful! This is unusual, but by no means unknown. But thoracic herniations are rare (allegedly) and many doctors are unable to recognise the usual symptoms, let alone unusual symptoms.

    A physiotherapist, who had been alocated to me to teach me exercises and techniques useful for someone in the final stages of MS (I'm choking up now at the memory of that bleak saga) noticed that certain movements and exercises made my condition suddenly worse and mentioned it to a junior registrar. He tried to contact the consultant neurologist who had been treating me, but he was at a conference, so he spoke to another neurologist who decided I should have a further MRI of the brain and neck and also of the thoracic spine.

    Before that could happen I tried to leave my bed and make my way along a corridor using a cane and fell over knocking a lady off her feet. She had recently had surgery for a brain tumor and was waiting for her husband to pick her up to take here home. She was unconcious and was rushed to the ICU and I was ordered to stay in my bed.

    The surgeon who had carried out the brain surgery was very annoyed and wanted to know who I was and why I was in a surgical ward.( I had actually been moved there because my bed in the neurological ward was required by an emergency admission and my wife, who was having an affair and didn't want me home, had lied to the hospital when they rang her to pick me up, saying I had told her I would comit suicide if they sent me home the same as I went in. Complicated isn't it?!).

    Well the MRI of the thoracic spine showed the massive calcified herniation. It had been there all the time but no one had been looking for it.
    The surgeon who had been so annoyed at me was actually the guy who performed the surgery on my spine and is now one of my favourite people.

    Sorry to ramble.

    I'm not young enough to know everything - Oscar Wilde
  • Mick, how are you now?
    Were you left with any permanent nerve or cord damage?

    Thank God that they did discover what was causing all your problems.

    I also have various symptoms that the doctors don't really know what is causing them. My Pain Consultant did say that if they didn't find out, particularly stiffening spasms that I get, he would refer me to a neurologist to rule out MS and some very rare neurological conditions that cause the same symptoms. I get these spasms particularly in the morning in bed, but also when I start to move having been sitting for a long while. I now get these throughout my body, from my neck down to my feet and lately they seem to be starting in my right arm and hand too. Did you have anything like this?

    By the way, I do have protruding thoracic discs, one is mildly pressing on the anterior surface of my cord, but there is no high signal shown on the MRI scan.

    I hope that you are now feeling much better and able to get on with your life again.

  • Mick,

    Please ramble if you need too...even though I didn't see your post to me as any sort of ramble issue! :) *HUG*

    Thank you for your post. I do have issues at my T8/9/10, but they are DDD and Osteophytes presently. I was told that when they reopened me for my second surgery that day (to remove a hematoma - he told my hubby it was a lot worse than the MRI showed, but he got it all), he could see my T3 disk was pretty 'interesting' looking - the MRI does now show a herniation at my T3 level (lovely).

    So far as for MS or ALS I've been "cleared" of either of them. I have no lesions on my brain, EMG and evoked potentials tested such that the MS/ALS is off the list, plus too my physical exam added to it (neg for Babinski and the other reflex tests) indicated I showed no "markers" for it.

    I of course will see how my recovery goes, and such. It did show (the tests) that Myelopathy had developed thanks to my spine becoming 'so unstable' allowing the cord to be 'banged' back and forth at various levels for almost 2 years!

    My left arm and more so hand are weaker and more clumsy than before surgery, but my surgeon and I pretty well agree to wait and see, as more likely than not, the nerves are all pissed off and on (hopefully) their road to recovery. The Laminectomies alone give high risk for the cord to be damaged - but I know that has already happened, so focusing on healing as best I can. :)

    Fingers crossed that all continues without MS or ALS. Even if that diagnosis showed MS, I could mentally deal with it, if it were ALS, other activities and plans would be going on.

    I hope you are doing better now? Please let us know if you've had other results - hopefully good results as of this date. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda/jellyhall,
    My heart goes out to you both in your search for a proper diagnosis. I was in that state for years.
    I don't think people realise how draining it is, mentally and emotionally to wake up every day weaker and more ill than before and not be able to make sense of it.

    I was never convinced about the MS diagnosis and I always had the feeling that they were trying to make the facts fit the story rather than make the story fit the facts.

    For instance, one of the most basic tests for MS is evidence of attacks and remissions. My GP was able to look back at my medical records and conclude that certain attacks of flu type illness, memory loss, insomnia etc were infact attacks of MS and periods when I seemed fairly OK was evidence of remissions.
    He was totally convinced, he told me so.

    I now know of course,the flu type illness was flu, the memory loss was caused by anxiety,stress and lack of sleep. The insomnia was anxiety and physical discomfort and the "remissions" were probably periods when I was so depressed and fed up with being poked and prodded that I just withdrew to a state of personal misery and couldn't be bothered to speak to him or anyone else and didn't show up on his radar for a while.

    Having a diagnosis that made complete sense changed all that. It was as important as the surgery itself. Despite a fairly bleak prognosis and a distinct possibility of permanent disability I was able to begin to come to terms with the situation and think about the future and like you, Brenda, I could visualize the possibility of a future in a wheelchair. I concluded that, provided everything was planned and prepared properly and the obvious problem areas were sorted at the outset, then such a life would not be so bad.

    But the surgery resolved everything beyond my wildest dreams. Slowly but surely, feelings and functions returned. Physiotherapy and exercising built up muscle strength and pain diminished by the day.

    It did take a long time and I still have a few residual mobility problems but feeling better each day as opposed to feeling worse has been a joy.

    One thing that didn't return was my wife. But "good riddance to bad rubbish" as we say here in England.

    I hope that like me your surgery will resolve all your issues, Brenda and jellyhall I hope you get answers soon.

    I'm not young enough to know everything - Oscar Wilde
  • Mick, big understanding, and thanking *HUGZ*!!!

    "good riddance to bad rubbish" <-- Love some of the wording you all from England have!! Bravo to you!! When things get tough and rough, our true friends stick with us, even if our spouses!!! Mine is my soul mate!!

    I too was told if I didn't retire in the next two years, I would be in a wheelchair. In one now (mainly for out of the house - in I am good). I was warned (and so far it is true) most of my leg weakness was from my neck cord damage, so long term (like nature trails, visits to the zoo etc.) my wheelchair and I are now co-buddies if you will - and I am okay with that.

    MS (and the one that DID scare me) ALS is now finally off the table as all is cord and some nerve root damage causing my problems. This surgery stopped progression, and too gave me back much of my cervical (and upper thoracic it turns out) stability. I am cool with that. ROM sucks, but I knew that was going to happen. I guess what I am saying is the pain, ROM, meds, recovery etc., none it is a surprise, so mentally I am actually in a pretty darn (considering surgery was less than 3 weeks ago) place!!! I am home finally, resting, feeling good considering. Life is once again good, even if I stay as is. :)

    Glad to see you too are in a happier place. You and I are proof that the old "normal" is not always as happy as the happy normal! *HUGZ*

    Brenda :)
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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