I HOPE I DO NOT HAVE MS-! ANY ADVICE FOR MSers?

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Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 489
   Posted 3/13/2010 2:24 PM (GMT -7)   
Hi-again-
 
Well-  After my terrible times starting past November---with full body myoclonus- I' re-evaluating things-   now going on 4 months---
 
OK---right now...HOPING ...I do not have  MS-
 
To start from day  one---I'm a 63 yr old male
 
In the beginning---strange myoclonic jerks in my back....& neck----smhair
Went to my neurologist ('movement disorders') and his colleague--specializing in "epilepsy-
 
They both gave me a thorough neuro(  Hand to nose.....pull my hands....push---etc)--I could go over this in my sleep----had various tests.
--.MRI cervical spine-Normal...(except for some minor arthritis)-
-EMG--normal...blood test for thyroid--normal...
.EEG....(both regular and 24 hr)--both normal-
-then,,,,last week...MRI of brain...normal--
 
My neuros both said..I had "idiopathic positional myoclonus"...(Symptoms...esp. myoclonus....worse when I lie down)-----Said..it was not serious.....would resolve......they could not say when-
 
Last 3 weeks....symptoms have changed,.....myoclonus.....not as bad--BUT----mild cramping of muscles....in biceps.....calves....thighs,,....AND parathesias.....to arms...hands....feet--"pins and needles"--shakehead
Two weeks ag was in ER----a neuro "fellow"...thank God....was on the floor..(studying under my neuro)----my entire left hand...felt like a 'pin cushion'.....numb.....By the time I got to ER......it was gone.....but neuro examined me...& stuck pin in....to see if there was 'residual numbness'-
He said it was due to a 'nerve'...in my neck.....(since he saw my MRI cervical....& there was some "arthritis,.....in C-5-6.....")---
 
Anyway----told my neuro of "changes"...in my symptoms!  He said...I should NOT be concerned......neuro symptoms often change...& indeed...it might be a sign of "resolving"-
 
OK---last week or so--myoclonus...has improved--BUT.......constant "tonic"...cramps...in biceps......legs......& tingly feelings there too---
My rib cage muscles feel very..."sore"...like I worked out---he said it was due to the myoclonus..(muscles being contracted so  much)---also---sometimes..right before going off to sleep...I feel like an mild-"electric shock"...in my head---  BUT--I am worried I may have MS 
 
My neuro here,....(and a friend who has MS)---said I do NOT have MS......
 
  Neuro said....just about ALL MS....patients...show "white lesions"...in Brain MRI....-
 
(I read where this is so in...95% of cases---i might be in...the other 5%)
 
I do NOT want a spinal--(neither does my neuro)---
 
OK......any MS sufferers out there---feel..(like both my neuros....& my Nurse practionier)---that I do NOT---BUT....what about...eyes
1) the muscle cramps...(there is NO weakness)---
2) the parathesia
3) sore rib cage muscles...
4) the "electric zaps"...(ALWAYS before sleep...w eyes closed)--(I "caught"...these when I had my 24 hr EEG on...it said.."No change in EEG"...I sometimes...think it's bio-chemical...like a serotonin....thing)--
 
My neuros.......suggest I talk w a 'cognitive therapist'....for my anxiety.....& .."hypochondria"-
 
I do have an appt w a therapist.....who specializes......in cognitive therapy....and OCD-
Also--I;m gonna try acupunture---
 
PLEASE---I need some of you out there.....who DO have MS.....or KNOW about this disease.....to tell me why my neuros are correct---!
 
Worrying..is such a ...."hassle"-! mad  Thanks so much---your answers are a Godsend to me-wink -Regards--Robert

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 3/13/2010 9:46 PM (GMT -7)   
Google Myclonic jerk and or hypnic jerk.  That could be an explanation for you what you experience as you go to sleep. 
 
Obviously no one here can diagnose you nor can they support or deny your neurologists findings.  If you feel like you have something serious that is being overlooked then you need to keep a detailed symptom journal and you need to keep saying that there is something wrong. 
 
I would definitely have the anxiety "treated" so you can say that you have been there and it didn't help. It might help and then will be feeling better.  Who knows.
 
Have you seen an MS specialist?  My initial diagnosis was a general neurologist assigned to me after being hospitalized (I was having trouble walking due to severe vertigo).  That neuro then sent me for a second opinion.  I was sent to UCLA MS clinic where an MS specialist also diagnosed me.  After a request for "reasonable accomodations at work, I was sent to a third who also verified the original diagnosis. 
 
The 95% - 5% is a common number.  You hear that one all the time.  Many feel strongly that they had symptoms before anything showed up on an MRI.  We have one member that had multiple MRIs before lesions showed up. 
 
The other thing you will hear is that white matter lesions can be caused by medical issues other than MS.  Lyme disease and migraines will cause lesions. 
 
I was diagnosed after having lesions show up on an MRI, I failed many parts of the neuro exam, I failed evoked potentials (you may want to ask about that test, it is non-invasive), I had O-bands show up on my spinal tap, I had no infection or other possible explanation show up in either blood work or cerebral spinal fluid and I had symptoms consistent with MS.
 
I have many permanent symptoms.  I have parathesia in my left hand and both feet/lower legs.  The tingling and numbness I have is consistent with a lesion I have on my spine.  My parathesia does not go away.......not ever.  It doesn't come and go. 
 
I can't tell you that you don't have MS but my opinion is that you probably don't.  Besides your clean MRI and other tests, you have had two neuros say they don't feel you have MS.  MS isn't a very common disease.  It is even more rare for a man and a diagnosis gets even more rare for a male your age.  2/3 of MS patients are women and the average age range is 20 - 40. 
 
All that being said, I do hope you are feeling better very soon.  Best of luck to you.  Feel free to post here as often as you would like.  We have many members that post from limboland.    
 
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 489
   Posted 3/14/2010 6:08 AM (GMT -7)   

Hi Gretchen-

Thank you so much for your detailed reply.wink

Yes-My neuos are excellent--My main one is a "movement disorder" specialist- the other an epilepsy specialist-   My 'official diagnosis is "idiopathic positional myoclonus"...(It is much worse when laying down-   Neuros say that is common w 'myoclonus'..!   Something to do with "sensory loops"-

And yes--I have had sleep studies done--I always had some "hypnic jerks"--but my present condition "myoclonus"....is recent--started in late Dec....2009---Neuros all say...it will go away--on its own--just as it came on suddenly-     These things are happening while awake...but mostly when laying down-

The 'movement disorder' neuro did mention what you said about age.(That I was a bit older for a new MS dx)  I did not know that such a large number of MS people are females in the 20-40 yr old range-that is amazing.

I will ask about "evoked potential tests--IF that is OK---can i feel better?

Also-I have no weakness anywhere--& I seem to do ok in the general 'neuro test"..(standing w w yes closed, reflexes, strength)

Thanks again, & I hope to hear from other MS sufferers--Regards- Robertsmilewinkgrin

 


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/17/2010 11:01 PM (GMT -7)   
Wotan,

I also suffer from myoclonus. I have the traditional jerks in my arms and legs. I also suffer from severe muscle spasms in my back. With medication, both are well under control. I take low doses of klonpin for my myclonus and use Baclofen for my spasms.

Myoclonus offer occurs when individuals suffer for some type of neurological disorder. I am curious, what made decide to seek out treatment for a Movement DIsorder Specialist vs. a MS Specialist.

Have your doctors come up with a treatment plan for the symptoms your a having?

Please keep us posted as to your progress.

Stella Marie   Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atrophy, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator).  Extra fun little toys and gadgets; O2 generator and assorted wheelchairs, walkers, canes, and orthotic braces.  Med - too many too list or even care about!

 

 



Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 489
   Posted 3/18/2010 6:11 AM (GMT -7)   
Thanks Stella Marie--
You are always kind enough to respond-
 
I saw a "movement disorder"...specialist....because my issues were in the "movement disorder" area-  (Also...my neuro has extensive background in MS)---but--again...I had "muscle movements"....& I was being treated by him for "hemifacial spasm"...(botox)----Thanks again for your caring concern---anyway---the myoclonus...as he said....is practically gone now....just occasional....small 'twitches'-  Robert 

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/18/2010 11:16 AM (GMT -7)   
Wotan,

I glad to hear your myoclonus is almost gone. Do not be surprised if it comes back again. Mine has a habit of disappearing for a few months and then is comes back. I'm not sure if that is common with all types of myoclonus' or just specific to me. Since my back spasms do the same thing I thought maybe they both had a cyclical nature.

Let's hope your just goes away and decides to stay away. By the way, how did you like the botox for your spasms. Did it take care of them completely? How ofter to you have to have follow up injections? Was botox the only thing you have use for your spasms or did you ever try any of the muscle relaxers? I guess I am always curious how others are treating try spasms.

That care

Stella Marie   Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atrophy, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator).  Extra fun little toys and gadgets; O2 generator and assorted wheelchairs, walkers, canes, and orthotic braces.  Med - too many too list or even care about!

 

 



Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 489
   Posted 3/18/2010 12:52 PM (GMT -7)   

Stella Marie--

Botox works wonders on my hemifacial spasm!  Right eye..& area around my rt side of mouth--just a few injections (mild pinches)-  about...15 units..(each injection between .5 units..or 2.5)---in the NECK for torticollis---each shot is at least 10 units )   my total is like between 15-20 units..total-  & it "holds" for....anywhere between 6 to 9 months-!   Once, I went close to a year!     Some people have to get them...every 4 months or so--tho you gotta wait...at least 3 months,,....for each injection-

 

 (I know they give much larger does to people with torticollis..like 200 units)

BTW---they are now using botox for..ready for this..."esophageal spasm"-!

Just saw my neuro & his neuro nurse this morning--great Dr--great guy-Robert

 

 

 


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/19/2010 1:17 AM (GMT -7)   
Thanks for the info Robert. I don;t think I will be using Botox for esophageal spasms any time soon. A little too much botox and we may never have to worry about those spasms in the future. I use to get a lot of esophageal spasms a couple of year ago. I am not sure how they are treating them now (certaining botox is not an option)? At the time I was getting them they were using nitro spray. It stopped the spasms, but you had to becareful about using too much and getting a nitro headache.

I'm so glad you have a great doctor. That sure does make all the difference in the world when you are under the care of someone you trust.

Again, thanks for the update.

Stella Marie   Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atrophy, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator).  Extra fun little toys and gadgets; O2 generator and assorted wheelchairs, walkers, canes, and orthotic braces.  Med - too many too list or even care about!

 

 


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