Looking for HOPE

[lovelife3]

I suspect I may have MS, even though my GP and Neuro say I do not.  In fact, the neuro I saw (at my insistance) looked at my MRI's and did an exam, and rather condesedingly said, "You do NOT have MS".  She says I have anxiety.  This is after many ms symptoms, and a silbling that has MS, as well.  I feel this was irresponsible on her part, as I know many people have normal mri's, bloodwork, and exams and have ms.  By the way, I do not have anxiety.  I am aware of ms mimics, and don't seem to quite fit any of those.

Anyway, I am wondering if someone can offer some hope, in the case that I do get a dx. of ms.  I am a very active mid 40's female, and hope I can continue to work, care for my young children, and enjoy life to the fullest for a lot longer!  I do not do well sitting still, and enjoy gardening, riding my horses, skiing, hiking, etc.  I realize this disease can be crippling, and no one can predict my future, but aren't there some that continue to live long, productive, happy lives, too?  How about better treatments on the horizon that would give me hope, as well.

Also, can anyone recommend a smart and kind ms specialist in MN?   The neuro I saw was neither, sadly.

Thanks!  I appreciate it.

[lovelife3]

Thanks to all.  You guys are great!

[twopack]

There are many programs that can help direct your efforts.  I DO LIKE your affirmations but personally I don't think talking ourselves into feeling better is very effective on its own.  If you didn't wish yourself -or talk yourself - into feeling bad you usually can't back out that way either.

On the other hand, negative self-talk can raise stress hormones and bring us down in a flash!  So keep up the little engine chant and pair it with an activity with some structure that has proven success in helping to strengthen body and mind.

I've used specific music and guided meditations on CD that taught me how to use progressive relaxation and pain control techniques.  I practice while awake but sometimes use the CD to ease my body into sleep.

I especially like a program of Mindful Meditation I have.  It helps to de-stress my alert mind but it takes more time to master. (I'm not there but might be if it was possible to listen and drive at the same time. NOT!)

Many people here have had success with forms of yoga or Tai Chi to stretch and balance mind and body.  Sometimes water exercise (not to warm if you have neuro symptoms) can be quite relaxing if you can be satisfied with walking in slow motion and are able to tune out the echoing reverberations of tile walls.

Sometimes you have to concentrate on just the physical or mental part of an activity and get comfortable with each separately before they can be combined successfully.  (Think of it.  You could drown if you meditate to deeply in water while you still need to be fully alert to your body movements!)

Whatever you do, just be sure to start out and progress SLOWLY.  Any new activity can add to body stress if you try to push to fast.  This isn't about perfection.  It's centering to work toward balance.  Remember you are in reconditioning mode.  You're not the proactive person who is feeling 100% and looking to jump into a program for prevention.  That's a different class and I've never seen it recommended here!

I do hope whatever course you choose brings some relief.  Again, I'm not proposing this as a dismissive solution.  I'm hoping you find some calm to carry you through this and sustain you after.

Mary

[heartfelt77]

  Any of us can make suggestion or give advice but, the bottom line is if you have ms it will come out and your doctors will evenually dx it and so, that's something that you can count on until then enjoy life and what you have and try not to ever take anything for granted.  

Reminding yourself that I'm able to do all of this and not thinking about what u can't do is sooo important to not only ourself but, also your body.  

Continue to live a positive life and when god ready he will give you the answers that you need.  

And, most importantly know that your worth it and Never give up!!

I wish u all the best....   Keep fighting

Take care
   Misty

[lovelife3]

Thanks for writing.

I like your advice about controlling the stress.  I am trying to meditate some, and just asking God for the peace to accept whatever comes my way.  I keep telling myself to prepare for, but not to worry about the future.  After all, I could get "hit by a bus tomorrow."

I keep telling myself, "TODAY I feel pretty good, TODAY I can take care of myself, my family, today I have many things to be grateful for"...and so on.

The here and now is all any of us really have.

[twopack]

IF you are diagnosed with MS there is plenty of hope in all the areas you questioned.  MS changes lives for sure.  It makes life harder on many days.  It doesn't have to take all the joy away.  It leaves potential for lots of gratitude and continuation of life goals.  

MS does confine a minority to permanent bondage in wheelchairs, homes or institutions.  It is possible for MS complications to lead to an early death.  That is why it is important for PwMS to live the healthiest lifestyle they can.

On balance, I hear more fear around here before diagnosis and more hope once people find tools to help them fight their disease and maintain function.

Finding way to treat anxiety (call it stress if you don't like the other word) can do nothing but help.  "That" state sends out hormones that keep your mind and body in a state of tension and it takes a toll.  

Everyone - MS diagnosed or not - benefits from learning to help the body return to a relaxed state.  It may only work for as long as the given "exercise" lasts in the beginning but the more you practice the more easily you will be able to calm your inner body, mind and soul.

Do what you feel is right about a diagnosis but you can't lose by decreasing anxiety/stress no matter what is causing your symptoms.

Wouldn't it be great if you got so good at this that your neuro symptoms disappeared?  NO, you can't wish anything away but.....  Wouldn't it be great to have this tool ready to help you fight whatever you might be diagnosed with in the future?

I'm sorry I don't know of any specialists in MN.  I do wish you the best in your journey.

Mary

[twopack]

I never claim to know who does or doesn't have MS.  There are a few things I'm pretty clear about.

When someone says their body isn't working as well as it used to --- IT ISN'T.  Finding out the reason for the change is the hard part.

Ruling out 'every mimic' of MS doesn't mean a person should be diagnosed with MS.  (There are other neurological conditions with no definitive diagnostic test.)

When a symptom is described on this forum it might be:
   A recognized or common symptom of MS.
   A symptom of MS that is common to other conditions as well.
   Usually seen only with specific lesion location, certain types of MS or
      as a known sign of disease progress.
   Accepted by a few physicians (off the record) but denied by others.
      (The 'truth' is yet to be known, therefore not a diagnostic help.)
   Reported by a person who assumes it is part of their MS.
      (This may or may not be true or investigated.)
   May seem to be common in MS when it is actually being reported
      by undiagnosed members.  (Limbolanders don't always identify.)

There's probably more but this is enough for here.

In short --- If you see it here it could be MS but it might not be MS and it could be seen in a PwMS but is not common or specific to MS.  We are not a diagnostic center.  We are a forum to share our experiences.

We share accurate and cutting edge information as well.

It's just not always easy to determine which is which in this woman's opinion.

Mary
  
  

[lovelife3]

Thanks for your reply.  I hope your are correct that it sounds like something else, but I do believe some of the symptoms you said aren't related to ms, truly can be.  I searched "ears ringing" after reading on this forum that it can be a neuro. problem, and sure enough, that's what I found.

My brother has ms (I found out after my sx. started - he didn't tell the family!)  His primary sx. is limbs falling asleep easily.  On this forum, there are many people with a dx. of ms, who experience the same thing at night (I searched "arms fall asleep" on this forum).

One of the health pages on this forum states that PPMS can be harder to dx. because the lesions are usually smaller, and are often found in the spine, vs. the brain.  Maybe it takes a while for the black holes and brain shrinkage.

I'm not trying to sound rude trying to prove you wrong, (believe me, I want you to be right), but just sayin' that from what I have learned, some of these symptoms may be consistant with ms, although I realize maybe some aren't , and the presentation does seem inconsistant to some degree.  A few things seem to fit Lupus more, but I'm missing a lot of those criteria.  

I hate this not knowing, and I guess if a 3rd Dr. can't find the problem, I'll just go on living my life until somthing else happens.

Again, thank your for your input.  I am trying to learn everything I can!!

[supermum_ms]

I'm a little confused by a few things you've written, you dont list any primary sx's of MS, they fall into being secondary sx's and a couple would be unusual for MS so i dont understand where your not fitting into a mimic. Mono, Lupus, peri menapause, Lyme disease etc spring to my mind, long before MS does.

A few of the red flags leading away from MS are bi lateral presentation, ear ringing, skin tightness, sore joints, no abnormality on neurological exam, no abnormality on MRI, if your arms only 'fall asleep' at night that would be unusual for MS too. It is rare to have MS and not have something neurological in nature showing up somewhere, yes you can have a clear MRI but usually the neuro exam picks up the neurological damage the MRI is not showing yet. How you know people dx without any MS markers just boggles my mind, lol though stranger things have happened with MS, its the nature of the beast.

RRMS is the most common form of MS, simply Relapsing Remitting Multiple Sclerosis requires sx to come and then to go away, because you say your sx came on gradually then the pattern doesn't fit RRMS.

Commonly by the time the PPMSer starts getting neurologically tested their brain MRI is showing up the black holes and brain shrinkage. I thought it was a strong and steady decline from the stories our PPMSers have told, sorry i'm not confident in this one but hopefully some PPMSers will provide you with more info.

Cheers........JJ  

[lovelife3]

To Kyle - I hope you have a great trip with no relapse!

To Jen - I have had brain & c-spine mri, but will ask about t-spine.  My biggest initial complaint was with my arms, so maybe that's why I didn't get one.

I read up on the categories of ms, and am still unsure as to what I have (if I have it).  My symptoms came on gradually, no one incident - which makes me think PPMS.  That might explain the harder dx.

But some of my symptoms have gone away, like the tight skin feeling, and the unsteadiness.  The chronic ones like the muscle  jerking and the arms falling asleep happen every day.  With RRMS, do people have daily symptoms like this?  

I know no one here can dx. me, but maybe someone with a  similar story, or a guess could help.  My Dr. probably   won't answer this Q., as she seems to not welcome them, and doesn't think I have it, anyway.

My biggest concern is getting on meds ASAP, but worry I won't find a Dr. who will give me them before more damage is done.  If it's PPMS, then it sounds like they won't work, anyway.  :(

Thanks again for the comments.  

[Sumanadevii]

The truth of the matter is the quicker you are treated the more probable the outcome.  The DMD's of today can halt or slow the progression.  I believe you need a second, third, or fourth opinion.  Don't stop until a dx makes sense to you.

Here is a thread that I just shared with another poster about lesions not showing.  In it there is a post by Quix our unoffical resident doctor.  She speaks to this issue.

http://www.medhelp.org/posts/Multiple-Sclerosis/Lesions-and-MS/show/1420329

[jenphilly]

I have to second Kyle...  this has been inconvenient....   I was finally dx'd in November, but believed to have had MS for about 5 years.  Symptoms became readily apparent in late May and I started on the rollercoaster ride of getting a diagnosis on June 9th.  

You mentioned MRI...  did you have brain, cervical and thoracic spine scans?  My brain MRI threw every off for a bit, my brain is clean, not a single sign of MS, but my C and T scans which were more then 3 months later, showed all the lesions.  

There are lots of things they considered that fit, tho I may  not have thought they did...  lupus, fibromyalgia, pinched nerve, arthritis in my lower spine (which I do have), even lyme.  I have bands for lyme antibodies showing I was exposed to lyme multiple times, but no active lyme.  Tho, not truly positive for lyme, my first neuro was convinced it was CNS lyme and I started rocephin.  I had a spinal tap the same time they did the picc line implant for the lyme treatment...  it was the spinal tap that was the final word on things...  

Contact the NMSS and contact your local chapter and ask for references for local neuros who have MS experience.  Here is the link http://www.nationalmssociety.org/find-a-chapter/index.aspx

Finding a caring neuro makes a huge difference.  I changed doctors too when the MS dx came about, just did not click with the first neuro and knew he was not the right doctor for me.  Now have a great neuro that I adore and who has a great attitude, listens, wants me to ask questions, doesn't 'direct', but gives options and suggestions.  

I am on copaxone, started earlier this month.  The meds today have a proven record for slowing progression, there is lots of hope!   There will be some changes and somethings to adapt to, but that is just part of life anyway!   Much like everything in life... you get out of it what you put into it.  And attitude is everything.

Someone on another site said to me when I first posted I was diagnosed to not let MS define me.  I have MS, MS doesn't have me...  

Keep posting and sharing!!

Jen

[lovelife3]

Thanks for the comments.  My symptoms started this past July, but not all of these came on at the same time.

Feeling (not actual) weakness and tiredness of arms and legs

Ringing in ears

feeling off balance, unsteady

Urge to urinate frequently

sore muscles, joints

muscle stiffnesss

muscle twitching, jerking

skin on arms has felt tight

arms "fall asleep" frequently at night (neuro said this has nothing to do with ms, but has since found out it can.)

I realize that many of these can be caused by anxiety, but don't feel that is my problem, as much as I would like to believe that!  Any input would be welcome.

[kwarendorf]

Welcome to our little corner of Cyberspace :-)

Yes MS can be a truly horrible disease. That said, there are many of us for whom MS is more of an inconvenience than an end to life as we knew it.

I was diagnosed this past October, but apparently I've had MS for over 20 years. I was diagnosed with Secondary Progressive MS.

This morning I finished booking my second vacation for the coming year. In April I'm going to visit family in California for 5 days. In July I'm going to explore the Canadian Rockies for 9 days.

I did have to arrange my travel dates around monthly Tysabri infusions. There is also the possibility that I could have a relapse at the time of either trip. Neither of these considerations would prevent me from planning and getting on with my life. Even if it's not quite life as I used to know it :-)

Welcome to our world!

Kyle

[heartfelt77]

Hello, nice to meet you. Welcome to our forum.   Sorry, to hear you had a bad experience with your neuro.  If you wouldn't mind sharing more of your story so we can help you to get the answers you need.  As, you know ms takes a long time to dx.  What kind of symptoms have you been experiencing?  Also, there is a lot of great health pages on the right of this page that you might be interested in reading.  

I just wanted to drop u a note to say hello. Stick around im sure others will be on to help also.  

Good luck on your search and don't give up u know your body.

  Take care
     Misty