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MS! Are You Freaking Kidding Me?!!

Hi Everyone, I have been gone quite awhile (again). When I was around in Dec I was posting & asking about odd pains and such that I had not heard about from you other members here and no one else seemed to be able to make sense of them either.

Well the good news is I am not crazy (no papers to prove it any ways lol) the bad news is - all the new and weird stuff I have been suffering with is MS!!!!!!

I was like "are you freaking kidding me"? On top of all my spine, joint and other health issues we need to add another BIG one like MS?

Other then the pain and other issues that MS has brought, let me tell you try figuring out what is spine pain, nerve pain or MS pain. *jawdrop*

And yes where the pain or issue(s) is coming from does make a difference.

So now I am trying to find a Nuro Dr that is willing to work with me - as to have a spine injury and MS is quite a challenge for them as well. Most of them are telling me right on the phone "nope - we don't want you as a patient - go away".

I just found out a few weeks ago so still in the very beginning of everything. I have decided not to do the traditional medical treatment plan for MS at this point. I am doing "holistic" right now.

I have created what I call my "team" - a hypnotist, massage therapist, chrio (who I've had for yrs any ways) and a vit/herb expert.

How am I doing you ask? Honestly - I am really struggling to handle this like a trooper :( Late at night it often comes crashing in on me. I don't have any where to turn to for support as 99.9% of the people on MS forums are doing the medical type treatments and that is 95% of what they talk about.....sigh

For those who missed my last return update in Dec 2012 - my husband age 49 now has Dementia! Yeah life is a challenge right now to say the least!

SERIOUSLY ! sigh....... :timeout:
L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
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Comments

  • MsHumptyDumptyMMsHumptyDumpty Posts: 1,567
    edited 04/07/2013 - 3:17 PM
    here's a link to what i was asking about right before i went mia this last time - if you know even a little about ms and read this now it all makes sense.

    these cramps are now most often in my body trunk area and are called ms hugs! really? some one needs kicked in the a** for calling these freakers a hug!

    https://www.spine-health.com/forum/pain/chronic-pain/new-weird-pain-surpasses-level-10
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • charryccharry Posts: 5,659
    edited 04/07/2013 - 5:39 PM
    I haven't been around much myself until recently so sorry to have missed your posts. Why not contact the MS Society online is their website to find a Specialist who deals with MS patients as there are new treatments they are trying, but having an experience Neuro in that area would help.

    My Nanny /Grandma had MS and she was my Mentor/ Idol what she went through and overcame since she raised me. I'm sad to hear you have this and hope if you apply for disability it will go through faster. Sorry to hear about your husband as well. One Day at a Time. Sending up a Prayer for you and your family. 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
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  • jellyhalljjellyhall Posts: 4,345
    edited 04/08/2013 - 2:21 AM
    I am so sorry to hear of your MS diagnosis. I hope that once you get used to the idea you will be able to accept it and at least now you know what is going on. Have they told you what type of MS you have?

    I was tested for MS but it was decided that all my symptoms could be coming from the 'high cervical lesion'. My GP told me that meant the cord compression, not that I had a lesion as in MS.

    I get that spasming around my abdomen which I knew was very like the MS hug, and also get it in both my legs. I also get trigeminal neurolgia which is fairly common with MS.
    I have had my 2 level ACDF now and almost all my symptoms are still there, including the tightening band around my abdomen. It is so hard to know and understand what is going on.

    I hope that you can join an MS forum where you will be able to talk to others who understand the problems that you are going through. Your case will be more complicated, but some of your problems will be the same. We are always here too to listen and support you through all of this.

    Take care, xxx
  • BeachcomberBBeachcomber Posts: 4
    edited 07/09/2013 - 10:14 AM
    Hi jellyhall,



    * Neck pain is immediately relieved when neck muscles, ligaments, and nerves return to their natural positions.
    * Hips become even again, so hip pain is immediately relieved when pelvic muscles, ligaments, and nerves return to their natural positions.
    * Legs become same length again, so walking is much, much safer.

    Hope this helps!

    ~Pam

    Post edited to remove specific doctor's name. Please read the Forum rules

  • BeachcomberBBeachcomber Posts: 4
    edited 07/09/2013 - 10:16 AM
    I see you edited out my entire first paragraph, which I guess is okay because you are the person to whom I posted, so you got the info despite my mistake of using a doctor's name... but why did you have to remove all mention of ** Edited to remove the specific doctors practice name** chiropractic medicine?
    **You agree not to post specific physician names or health care facilities names on Spine-Health.com.
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  • anyone with multiple spinal surgeries .and long term illness {most of us on here } will...develop another long term even lethal disease before we should .I asked him why someone that's looked after themselves like I have .should now be looking at at best crohn's disease or even cancer .he said both are common as are premature heart attacks and strokes as is dementia and of course suicide ..well that made me feel so much better ..he told me that due to us being inactive cardiovascular diseases are common and mental function suffers as many of us don't work due to our health ..many of us can expect a reduction in ;;normal .life span from anything ranging from 5 .... 20 years the last few years are normally spent bedridden ..now if you weren't down when you started to read this post ..I bet you are now ...!! chronic illness couples with strong narcotics and inactivity = a shorter life .makes sense when you think about it ..
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • I refuse to let myself fall victim to these other diseases. I have had an L5-S1 fusion, and two fusions on the C-4 to C-7. I have DDD and have already lost disks L-1 thru L-4, and am a chronic pain patient. I might not be able to hike, but I can do "walk at home" dvds, even if I have to walk through the pain. I can't (never could) work physics problems, but I can do brain exercises. We don't have to succumb to ailments of old age in addition to the problems that we already have. But, we have to make the decision to live as full a life as possible.

    Kb
  • kbbaby said:
    I refuse to let myself fall victim to these other diseases. I have had an L5-S1 fusion, and two fusions on the C-4 to C-7. I have DDD and have already lost disks L-1 thru L-4, and am a chronic pain patient. I might not be able to hike, but I can do "walk at home" dvds, even if I have to walk through the pain. I can't (never could) work physics problems, but I can do brain exercises. We don't have to succumb to ailments of old age in addition to the problems that we already have. But, we have to make the decision to live as full a life as possible.
    Sheila Coughtry
  • I too have had the same kind of back surgeries, not neck though. I admire your attitude. Am taking heart with it, I am 75 went through back surgery last October, now my left knee has decided, gee you are not finished, you need a knee replacement, not afraid to have it, but darn, wasn't last year enough. Had the right knee replaced 2001, not bad at all, so I am not afraid to have this one done, but I am not ready for it, so for three weeks, I take shots in the knee, to help the pain and replace some of the stuff that has gone away, and for four weeks, I have pt, what fun, I hate pt, but I will do it
    Keep on thinking the same way you do, it will keep you going longer, I believe that, if we give in to all the crap, we might as well not be here, I want to walk right again, so am keeping on, keeping on, maybe one of these days can throw all my pills away, but I wont give up
    Sheila Coughtry
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