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carabo
New Member


Date Joined Oct 2006
Total Posts : 4
   Posted 10/6/2006 6:25 PM (GMT -6)   
I am in the process of a possible ms diagnosis and I found this forum so thought I would ask all of your opinions.  I started this about 3 months ago after waking with a numb arm.  Several days later it became two numb arms.  The numbness went away after about a minute.  Then I started to notice tingling in my toes and fingers along with muscle jerks in my shoulders and sometimes legs.  I went to my PCP and she thought maybe ms.  She sent me for a brain and cervical spine MRI.  While I was waiting on those results my arm and leg started to ache.  I have no balance or weakness issues but sometimes razor burn type feelings in my legs and numbness in my toes.  Anyway, the MRI and also an EMG came back negative.  I was sent to a neurologist.  He did all the usual test, checked my eyes, had me walk on my toes and heels, hit me with hammers and etc,etc.  He said I don't have ms, nothing neurological going on and to take some elavil and get some sleep.  I am to call him if anything new develops.  My question is, should I believe this guy or should I seek a second opinion?  I know alot of things can mimic ms but he didn't seem concerned about any of them either. Right now I have pin point places that burn or itch at various times on various parts of my body.  Yesterday my ears felt itchy! I plan to talk to my PCP about this but wanted some others opinion. Thanks!

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/6/2006 8:12 PM (GMT -6)   

Hey Carabo

Welcome to the site! To repeat some good advice given by others here, u should seek out a second opinion! The fact that he didn't find anything that would allow him to dx u with ms means one of two things. U either don't have ms or it's too early to see. It'd prob be a good idea to get a second opinion and see what that doc says. That's not to say u should keep looking for one that'll tell u what u expect to hear or that u should doc hop, but u should give u'rself the satisfaction of being sure. I went thru this same thing in a way. I have had all the tests done and nothing found. I still have symptoms and am still in limbo. I sought out a second opinion and was told the same thing...don't know! Did he want to see u again? Is he going to follow u? If he's not interested in getting to the root of things then maybe he's not the doc for u. The best advice given me on this subject is to find a doc that's trying to take care of u and u'r happy with and stay with him/her. If u want a second opinion, get one. Don't jump from doc to doc tho because there is no way to track u'r symptoms/progression that way. Keep in mind that if this is ms it can take quite a long time. Many here waited months and even years before they found out what their dx was. Others find out quickly. There's no definite thing with this. Sorry. I hope u get some answers soon and i'm glad u found this site. The people here are great and are so helpful and knowledgeable. Please keep us updated and feel free to ask as many questions as u want. We're all very happy to tell u all we can.

rhonda

 


carabo
New Member


Date Joined Oct 2006
Total Posts : 4
   Posted 10/6/2006 8:54 PM (GMT -6)   
Thanks for your reply.  I am going to talk to my family doctor since she sent me to this guy and see if she can give me another referral.  I don't know how he can possibly say I don't have ms from the info he was given.  I would have felt better if he had said "you don't have ms at this time," and then proceed to test me for some other things. I know this is a long process but it isn't helped when a doc just writes you off. I refused the elavil by the way.  Yes I have anxiety(who wouldn't) but I don't think I need drugs at this time to sleep.  Anyway thanks for letting me vent a little.  I knew you guys would understand. Oh one other quick question, do the initial symptoms of ms last for several months?  This has been going on since early August, but the symptoms keep changing. 

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/6/2006 10:02 PM (GMT -6)   
Hey Carabo
 
I don't blame u for refusing the elevil. If u don't need it u don't need it! I'm sorry u've had such a run around with this, but hang in there. Yes, it's a long process, but eventually if it's ms it'll show up. If it's not then u'r right, it should be persued. I had some very strange and strong symptoms that scared the heck out of me at first. I've since learned how to deal with them...along with some meds to help me cope. If u'r still experiencing symptoms u'r doc...just u'r regular gp...can get u meds to help with those. Some others will prob be along to tell u about their meds and what they take them for, but i use cymbalta to help with general symptoms, requip for jerking and SOMETIMES klonopin to help further with the jerking in my legs specifically. (that's a med i have not used much because it's soooo strong) Yes, the symptoms can last a very long time or a short time. Mine started in late Feb and many are still going on. They come and go tho. Most here will say about the same. For example, i get off balance. Not every day, but often enuf that i can see it's not gone. Some things (if it's ms) will come and go...somethings may stay for a long time...some things may never leave. Have u been to the national ms society's site yet? If not, take a look sometimes and check out the guidelines doc's must follow in order to dx. The thing is that tho u may have many, many symptoms, u must meet certain criteria to be dx'd. Example would be lesions in the brain or spine...documented or known flare (two in certain amt of time) and other such criteria. I know u'r aggrivated and u have every right to be, but even tho u have a lot of symptoms and they're huge to u, the doc can't and won't just step out and dx until he's eliminated every other possibility of anything else. That, afterall, is the dx process of ms. It's an elimination of anything else and when nothing else exists besides ms...and u meet the criteria...u will then be dx'd with ms. Hang in there and we'll hang in with u. Don't give up and don't be pushed aside. Another thing. Start a journal of u'r symptoms now. Document all u can remember and go forward from there. It helps the doc see the pattern u may have and may help in u'r dx. If u have something come up...like probs with u'r eyes...see the doc pertaining to that issue...an eye doc...and note that in u'r journal. Also, start now getting copies of all u'r records. Test results and all. They're u'rs for the asking and u may need to present them to other docs later on. It's always good for u'r own use too. U can follow by knowing what's really going on per u'r doc's notes. Best wishes to u and keep posting!
 
rhonda
 
 

Post Edited (rhondab) : 10/6/2006 10:07:29 PM (GMT-6)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/7/2006 6:05 AM (GMT -6)   
carabo said...
I am in the process of a possible ms diagnosis and I found this forum so thought I would ask all of your opinions.  I started this about 3 months ago after waking with a numb arm.  Several days later it became two numb arms.  The numbness went away after about a minute.  Then I started to notice tingling in my toes and fingers along with muscle jerks in my shoulders and sometimes legs.  I went to my PCP and she thought maybe ms.  She sent me for a brain and cervical spine MRI.  While I was waiting on those results my arm and leg started to ache.  I have no balance or weakness issues but sometimes razor burn type feelings in my legs and numbness in my toes.  Anyway, the MRI and also an EMG came back negative.  I was sent to a neurologist.  He did all the usual test, checked my eyes, had me walk on my toes and heels, hit me with hammers and etc,etc.  He said I don't have ms, nothing neurological going on and to take some elavil and get some sleep.  I am to call him if anything new develops.  My question is, should I believe this guy or should I seek a second opinion?  I know alot of things can mimic ms but he didn't seem concerned about any of them either. Right now I have pin point places that burn or itch at various times on various parts of my body.  Yesterday my ears felt itchy! I plan to talk to my PCP about this but wanted some others opinion. Thanks!
I see Rhonda has offered her view. Here's mine, and it's a bit different:
 
Indeed, go back to your pcp. Tell her what the neuro said, and ask her what you should do next. Particularly, tell her that the neuro told you "...there's nothing neurological going on."  Have you had blood work done, that might indicate something other than a neurological disorder that is causing your symptoms?  Maybe instead of a neurologist, the pcp would recommend a rheumatologist, or some other specialty.
 
Indeed, not all buzzing and tingling. and fleeting numbness (you said it went way "after about a minute"), or an itchy ear -- are signs of MS.  That's not to say that you might not, some time in the future, develop MS..
 
but it is to say that a neuro, looking at those kinds of fleeting symptoms, and seeing a clear MRI, would say essentially the same thing to you: "watch, wait, call me if anything new develops".
 
Rhonda gave you links to the National MS Society web page. There is a ton of information there -- and much of it will boil down to: there are specific criteria needed to diagnose MS (as of now, it doesn't appear you have that); symptoms of MS aren't usually considered "signs" until they've been with you for at least 24 hours, usually longer; there are lots of disorders that look like MS "from the outside" and have to be ruled out before settling on a diagnosis of MS...and you haven't been through that process at all.
 
Now, you could certainly go to another neuro and get a second opinion. If you can afford it, or if your insurance will pay for it, and it will give you some peace of mind, then by all means do it.  But don't be surprised if the new neuro tells you essentially the same thing.  Unless and until some more definite and specific results come up, about all you can do is watch and wait,
 
and get the blood tests and other testing to rule out other possibilities.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 10/7/2006 11:45 AM (GMT -6)   
Hi Carabo,

Sometimes things are not perfectly clear as to what is causing symptoms. If you or your pcp feel its necessary to seek out a second opinion then by all means do so. The thing is though if nothing is indicating MS "right now" then there isn't much else they can do but watch you and see if anything shows up later. That is why the neuro told you to call if anything new develops, and that is something you should try to keep track of. A journal might help you, write down symptoms that happen on a daily basis and if anything new appears or worsens report that to your doctor.

It can be frustrating feeling bad and not knowing why and I'm sorry you have to go through that. In the meantime, I would ask your PCP about other possibilites, get some blood work done to rule out other things. Things like diabetes, Lyme's disease, fibromylagia, Lupus, b-12 deficiency among others can all mimic MS symptoms. Good luck and let us know what develops.

Kimber
 
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carabo
New Member


Date Joined Oct 2006
Total Posts : 4
   Posted 10/7/2006 3:38 PM (GMT -6)   
Thank-you everyone for your responses. I have had my B-12 checked and it was normal.  I have had glucose tests done too.  Back in early June I started having severe pelvic cramping(I likened it to contactions during childbirth).  Anyway I had a cat scan, upperGI and pelvic ultrasound.  Along with all those tests my PCP ran numerous bloodwork tests including the B-12 and viral studies etc.  Of course everything came back perfectly normal.  As the cramping started to subside(in early August) all this jerking, numbness and tingling started. I guess I get frustrated because I have felt badly for so long with no answers.  My poor PCP doesn't know what to do next. I fully expected at 56 years of age for some health problems to arise, but not like this.  Oh the other weird thing is I developed a rash that would appear on various parts of my body and would come and go.  Right now it is on the inside of my arms!  I have never been allergic to anything in my life.  Just more of my weirdness I guess.  PCP can't figure it out either.  Oh well!  Thank-you all again for your comments.  I will start to keep a journal and set up an appointment with my family doctor on MOnday. 
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