Syrinx and MS

[marge1134]

Is there anyone on the forum that has both and if so how hard was it to finally get a DX?  Have Syrinx and possibly MS.  Still  in the process of testing.
Thank You

[selmaS]

  Many with HA's will have those white lesions in the brain it is the bands in the LP that make the diff what was found there....

  Many with Chiari and syringomyelia get that same "hug" sensation...not just those with MS again this is y there have been mis dx's of MS when it is Chiari.

I strongly suggest u get copies of ur MRI's and the reports and get other opinions......

  Jan 2013 is a long wait....and with Chiari or ne neuro pain meds do not help....they may take the edge off....but that is it.

  The itching makes me think a syrinx....hmmm

  did u have a MRI of the thoracic , and lumbar spine as well as the brain and cervical spine?

[marge1134]

MRI had numerous white spots (was told everyone has these but I have more than a person my age should have.) LP-had Protein levels that were high along with other numbers that could be MS.  Symptoms , tremors, SEVERE pain under my left rib cage (was told by neuro that this could be MS Hug), vision problems, pain over entire body, itching under my skin, and many more.  I actually got a call this morning that I was referered to Ms Specialist in Birming ham (Jan 2013)
Meds are Lyrica, Neorotin, and BACLOFEN.  Pain meds do not help at all.  These meds do not stop pain but helps keep me going,  Thank You!!!!!

[selmaS]

  Hi and welcome to the Chiari forum.

I know this is a difficult time trying to figure out what is going on, and to have conflicting issues as to what u may or may not have is very frustrating.

All I can suggest, as we have had others with the possible MS dx and it was Chiari along with syringomyelia (syrinx) not MS as the symptoms r so similar and Drs r not willing to accept the fact Chiari does affect people...it is not well known, but it is not rare, it is Drs that know and understand the condition that are rare. Far too many  have Chiari then have MS, even those Dx with MS r finding it was not MS but chiari they had.
May I ask is ur syrinx in the cervical spine?

I am sure u had a brain MRI by this point....do u have copies? how about the report? If not, request copies of each.

Did they do a LP on u yet?

If they r planning to do one, make sure the tech doing the draw is aware of ur syrinx and that u may have Chiari so they draw slowly as  a fast draw can pull ur cerebral tonsils down and create more issues for u.

  I know a few have had both Chiari and MS and have gone to the MS forum here on MedHelp....redflame is one that was a member here and there, but posts there and not here ne more.....so she may be able to offer u some insight.

  Here is the link to that forum -http://www.medhelp.org/forums/Multiple-Sclerosis/show/41

I looked and Lois "RedFlame" has not posted since April of this yr....not sure what is going on with her...but u can always send her a PM and she will get an e-mail letting her know someone is trying to contact her.