SHOULD I BELIEVE MY NEURO-THAT I DO NOT HAVE MS-?

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Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 465
   Posted 5/28/2010 2:18 PM (GMT -6)   
  I've been thru hell- since this past Nov., after a bad bought w the flu-!
 
Since then, lots of muscle myoclonus...fasciculations & cramps!
 
Since this past January, have had 2 MRIs...(brain & cervical spine) 2 EEGs...(one a 24 hr one)- an EMG....& blood test for thyroid-!  AND, of course, neuro exams....w reflxes,, strength, etc-"normal"-!
 
ALL my tests have come back, (as Drs. say)- 'unremarkable'= 'normal'-!
 
But, my strange muscle myoclonus continues....as do ocassional cramps- & lately been having problems with brief periods of "balance"...issues!
 
I have a new neuro....& he says, everything looks fine! Normal reflexes..& no weakness!
 
  My Dx...is "Benign myoclonus"...(etiology unknown)--! Says..it will resolve in its own time!
  (The 'old'...neuro swore up and down....saying he was 100% sure I did not!   I just saw my new one...& going by tests...& his exam...also is certain i do not!  Tho in a much nicer way!)   He...(as have others)--told me about 60%..of MS....strikes females....bewteen..18-40 yrs of age!  i did not know that!  (I'm a 61 yr old male)
 
I just worry....that w my unusual myoclonus...cramps....& lately.....some 'momentary'...balance issues....AND.....sore rib cage...(I thought it might be the ' MS hug'...as it often migrates to my back!
My wife thinks it is more likely Fibro....and/or "costrochondritis....!  
 
Going to Mayo Clinic,,...next week..(June-7th....they say they want to allow...5-6 working days!   Probably will be less--but, as a first timer---that's what they ask!)--I'll be seeing a nationally known 'movement disorder'...neuro!
 
Anyway----A few questions...(Please--I hope for some answers....from those of you who DO have MS)
 
1) What tests do you think i'll get at Mayo-?  I'm thinking...an MRI (brain)...w contrast...& maybe...MRI...of spine!    Probably more blood tests.....another EMG....and maybe 'evoked potentials'...along w a usual neuro!
 
2) one thing i do NOT want...is a spinal--!   A friend of mine....an RN....says they would not...unless....they 'suspected'...something!  (if i do---are they bad?  Or...as some say...just a headache)--?
 
3)  Has anyone here been to Mayo in Rochester Minnesota?   what was it like?
How long did you stay...and ...what tests did they give you?
 
I'm looking forward.....and also....afraid!   smhair Please---I ask you to get back...& help alleviate my fears!
Not only am i driving myself..crazy...but my wife too-! turn     Respectfully---Robert...!

Jan4you
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 5/30/2010 7:58 AM (GMT -6)   
HI Robert~ HUGS!!
 
I am so sorry for ALL you have been going through. Yes getting diagnosed..well you kinda have been, but its hard to accept that its NOT MS..is that right?
 
I am going through yet another MS work up my 2nd one after I was being followd by an MS doc for 4 years..he was monitoring me and said after 4 years, "No you do not have MS." But I was leaving his practice due to insurance changes. Have a new neruo for seizures and he also thought MS..did another brain MRI..and I have a few more lesions than before..after years.
 
IN 2008 gave up chasing a MS diagnosis. These docs know "something neurological" was going on..and I continued to see other neuros to find out.
 
Suggestion: Keep a journal of what symptoms you have and if they go away (remissions) even if other symptoms remain.
 
Some times things look MSee..but are not. So again, I suggest you NOT think its MS..but want help for what it IS ok? IF its MS .. it has a way of returning..or ...getting worse. If your MRIs do not show lesions..then its more difficult for docs..with no abnormal reflexes and weakness..makes it more difficult to diagnose. BUT if it IS MS..it will show eventually.
 
I had a patient who just woke up numb on one side..looked like a stroke..ruled out. Weak arm and leg. Actually NO use of one arm..had to walk with a cane..they RULED OUT MS..he slowly started to get well. It was weird..somethings have NO answers what or why..but.. if it IS..then it will rear its ugly head.
 
We have a lot of heavy metal problems in our systems too..and that will manifest much like MS too. I had 2 detoxes from mercury poisoning and whaalaa.. I got so much better.
 
Now I will not accept I may have MS again. Saw a reg neuro for seizures, who thought I also had symptoms of MS..got worse..went into hospital for IVSM (steroids) and improved..but not completely. I am awaiting  an appt with a MS neuro this week. Its hard to do this thing called LIFE when you are not functioning like you used to. Getting diagnosed properly is a challenge for sure.

I have had the "ms hug" which my ORtho doc does not use that term. I get one sided to two sided pain..spasms..that eventually wrap around m whole rib cage and squeeze. IN fact I am having that now. It comes and goes..and returns. I use Ibruprofin, Methocarbamol..and a back brace that wraps around. Its really chostrocondritis.
 
So.. take a breath..try not to worry or panic..whatever IT IS..it will reveal itself. But know..it may NOT be MS ok?
 
Also there are other MS forums.. the biggest one I know is MS WORLD..its great with lots of people to support and make suggestions. They have a part of the forum called Limbo check in..where people wait to be diagnosed with MS and need extra support.
 
I am Mjan there. I am on there a lot. Maybe I'll see you there one day.
 
Warmly, Jan
I believe in MIRACLES ~!
 
DX: 02/10 MS and Epillepsy
DX: 10/09 Gitelmans disorder, a rare kidney disease
DX: 02/09 Dysautonomia and SICCA syndrome


Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 465
   Posted 5/30/2010 12:23 PM (GMT -6)   

Thank you, Jan- wink

I JUST now posted there..under..."Christian_88"-  Maybe you can respond...again-  Get back-Robert

 


Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 465
   Posted 5/31/2010 9:17 AM (GMT -6)   

JAN--

As you know--I DID post there-!  And i read your replies-BUT, for whatever reason, I can NOT "reply"-!  I'm already logged in-!  JAN--I MUST contact you, but you have no PM....access!

PLEASE--PM me...here...with an e-mail OR phone #-!  I need to contact you--!  Get back-Thanks-Robert :-)

 


Jan4you
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 5/31/2010 9:25 AM (GMT -6)   
Yes its frustruating staying ON on that forum. YOU have to sign every few hours..or less EVEN if your user name appears..you are NOT sigined on. YOU have to sign ON again..and again as they are updating all the time new posts. Frustruating for rue.

they stopped the PMs bacause it caused the program too many problems..I really wish there was a way..only.. you can post your email address or the moderators can contact you to do that.

Keep trying..
Jan
I believe in MIRACLES ~!
 
DX: 02/10 MS and Epillepsy
DX: 10/09 Gitelmans disorder, a rare kidney disease
DX: 02/09 Dysautonomia and SICCA syndrome


Jan4you
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 5/31/2010 9:26 AM (GMT -6)   
P. S. BUT there are many many MORE folks responding there than any other forum.
And the folks on there, the regulars esp are soo nice and helpful.
 
I believe in MIRACLES ~!
 
DX: 02/10 MS and Epillepsy
DX: 10/09 Gitelmans disorder, a rare kidney disease
DX: 02/09 Dysautonomia and SICCA syndrome


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/1/2010 7:30 AM (GMT -6)   
Hi Robert,
 
I remember when you posted here before about the benign myclonus.  I seem to remember that anxiety is also a problem for you.  Have you been success at treating that at all?  I hope so.  Anxiety of any kind is a real medical issue and can cause severe symptoms. 
 
You are right with the tests you believe will be ordered for you.  If they are looking specifially for MS, then maybe not the EMG.  That is a test for the peripheral nervous system while MS is a central nervous system disease.  I also agree with your RN friend.  Unless they suspect something, the lumbar puncture will not be necessary.  I have had a lumbar puncture without issue. It is not a lot of fun but it did help pinpoint MS for me. 
 
It is VERY good news that all of your tests came back "unremarkable".  I have MS and it is considered at this point mild.  I had very obvious test results.  I had lesions, irregular reflex and responses to a neuro exam as well as failed evoked potentials and a lumbar puncture with o-bands evident. 
 
While it is possible to have MS without lesions (< 5%), I have never heard of anyone being diagnosed with MS having only symptoms and no test results at all. 
 
Best of luck at the Mayo clinic.  I do hope you get some answers so you can find some relief.  Will they be looking at just MS or are they looking for any cause and diagnosis? 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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