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Posted 7/26/2006 10:48 PM (GMT 0)
Hi everyone,

My name is Nichole,I am 26 years old,married for six years and have two wonderful little kiddo's. I was dx with Ulcerative Colitis back in 2002 and my health has gone down hill since then...having shinlges in 2004 and most recently my doctor thinking I may have MS. My symptoms:facial tingling/numbness(this also happens to my hands),vertigo,confusion,slow word recollection,short term memory loss,exhaustion,muscle weakness/pain,feeling of fog around me(like I am a 3rd person looking in on my own life)...I know I have more complaints as far as symptoms go,but this is what I can recall off the top of my head. I have had bloodwork done,as well as a MRI scan.I went monthes having this facial tingling/numbness and did not see my doctor...it wasnt until a few weeks ago that it became so bad that I was scared and thought I had a stroke,and went to the ER. My MRI scan came back with a small section of my brain having a "white spot"...I guess thats what my doctor called it. I have been referred to a neurlogist and will be seen on August 15th...time cannot get here fast enough!! My family doctor has not said yes obne way or another if I actually have MS...There needs to be more testing first...but he seems to definetly be leaning that way. From what I have read a spinal tap is a logical next step with testing...however my family doctor mentioned something about skin testing. I am very new to all this,please excuse my ignorance...any advice or input with MS would really be helpful...thank in advance!!

Edited to add~another syptom that I remember after reading another poster...I am peeing constantly it seems. I was NEVER like this before,but these past two monthes or so I cannot even sleep an entire night through because I have the urgency to urinate. If I dont actually wake up to go pee,I am in pain in the morning to empty my bladdar. Also...my sleep pattern stinks...insomnia real bad...not sure if this is related or not. And...I have post herpectic neuralgia from the Shingles in 2004...this has been acting up like CRAZY this past two monthes...wondering if this is a connection?

Posted 7/27/2006 12:30 AM (GMT 0)

I'm sorry you're having so many problems!  I know that August 15 seems like an eternity away. 

You talked about having shingles. Do be sure to tell the neuro about that. And you might want to ask about the possibility of having a recurring chronic infection of the central nervous system - -something a  neuro might not be able to discern but you'd be seeing someone like a rheumatologist or infectious disease specialist. The fact that you're having problems related to the shingles, in conjunction with all the other issues, seems to me -- and note, I am NOT a doctor-- that there might be some connection between the shingles and all the rest of the symptoms (and not necessarily MS.)

I'm not sure what the skin testing is about. That isn't anything typical for MS.  You might want to ask your doctor what he is looking for. The only skin testing I know about are for allergies, or tuberculosis, and I don't think either of those could cause your problems.

The bladder problems can occur with MS..but with other problems, too. Be sure to tell your neuro about that, too.  There are meds you can take for that, but generally doctors will want to find out why you're having the problems, before they start treating it.

Yes, a spinal tap could be a useful diagnostic tool.  It could indicate MS...but it could also indicate whether there is something else going on that the doctors need to look for.

Do come back and let us know how it goes!

Posted 7/27/2006 3:27 AM (GMT 0)
Nicole,
I'm sorry you are going thru all this! Be sure to keep a log of all your symptoms so you can tell your doc the rundown. Take care and let us know how it's going! :)
Posted 7/28/2006 7:48 PM (GMT 0)
Thanks for your advice!! I went and picked up my results from the MRI today,to take on the 15th...wow...how confusing! I now understand why I am not a doctor...way to confusing! LOL. As I read this I realize that I must have misunderstood my doctor(which is something I commonly do,reason I usually take along another adult to my appts..and this time I didnt). There are two white matters...one which measures 3-4 mm in diameter and another which measures 8x4mm in diameter. Everything else is all doctor talk and I dont understand it...underlined in the report it says "Demyelinating process is a primary concern of a patient of this age and with this symptomatology". It also says Vasculitis can have similair findings...so I am going to look that up,not really sure what that is. This is all so very confusing...I will keep you all updated.
Posted 7/28/2006 7:52 PM (GMT 0)
Something else I forgot to mention was about four years ago I was on high doses of Prednisone. I was in the hospital for 7 days and when I came out I was just a mess...I could barely walk,constantly in pain. I felt like I had been ran over by a truck...I always chalked it up to "not doing well" on Prednisone. Well,I have been on prednisone several times since,same high doses...and this has never happened again...as far as my walking being impaired,the slow walking,difficulty with stairs,etc....any input on this?
Posted 7/28/2006 8:33 PM (GMT 0)
MS is a disease that can be described as having a "demyelinating process". Thre are others.  What the report is saying that -- given your age and current symptoms and signs (which the doctor can detect through the testing done in his office),  they're concerned that indeed you have a "demylinating disease". MS usually occurs in people between the ages of 20 - 45 (although clearly folks are diagnosed earlier and later...)

Vasculitis is an inflammation of the blood vessels.  It can show up on an MRI as "white matter".  A doctor needs to determine the location of the "white matter" - -is it in an area that is more typical of MS, or of vasculitis; and he has to compare the symptoms you have, to narrow his focus.  Here's a web site that talks about vasculitis:
 http://www.hamline.edu/~lupus/articles/vasculitis.html

Prednisone can affect people in different ways. Just because you had one set of experiences in an earlier round of it is no guarantee that you'll respond the same way the next time, or the time after that.  Some folks don't respond well to it at all. 

Walking...mobility problems...are common with MS.  It's often the legs that are the first affected.  But that can happen with other disorders, too.

Obviously it's important that you share all this with your doctor when you see him. And yes, it's always important to take someone with you that can help keep track of all that he's going to be saying.  These days, with so many appointments limited to 20 minutes or so, the doctor seems to talk non-stop and throws out so much information, I don't know how any one person can keep track!

Good luck with your appointment. Let us know how it goes.

Posted 7/28/2006 8:48 PM (GMT 0)
Thank you so much! I have been going through this report and checking online webster dictionary...I have found the same info you have spoken of...but it helps to know that the way I have understood it IS actually the way it is meant to be understood...if that makes sense:) I have already begun jotting down symptoms as I recall them...some I dont have everyday,others I do...and some may go weeks without having then have for several days at a time. Thanks for your quick response...I'll update as I can..
Posted 7/31/2006 2:11 PM (GMT 0)
Hi Nichole,

Your symptoms and conditions are ALL consistent with Lyme Disease---brain fog, etc.; so I really suggest you check into that. You have to be given the right test to really detect it---which unfortunately most neurologists do not understand. Shingles can occur because of Lyme (this happened to my Mother) and it would explain your prednisone experience because prednisone normally temporarily suppresses your immune system, but with Lyme your adrenal system is usually not healthy enough to come back up, and a suppressed weakened immune system can really cause the Lyme bacteria to go wild.

MS is one of the most common misdiagnoses for people who really have Lyme. Lyme can cause lesions too if you do have them, but Lyme is treatable with antibiotics. Please post on the Lyme forum if you would like more information.

Post Edited (KCLyme) : 7/31/2006 8:13:56 AM (GMT-6)

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