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Hi Everyone!

Aug 21, 2008 08:41PM - 5 comments

I am new to the group and just wanted to say hi and to let you know some of my symptoms. On December 4, 2007, woke up with a burning foot. In less than 1 day tingling, & numbness had progressed up right side of body. Went to ER & was told that I probably have an inflammation of my spinal cord. Went to see a neurologist who ordered an MRI of brain and cervical spine. A lesion was found inside my spinal cord at C6 level. Was told it was a metastised tumor, primary tumor or MS. After a mammography, pap smear, endometrial biopsy, colonoscopy, gastroscopy, chest x-ray, cat scan of pelvis, abdomen, and chest (looking for a cancerous tumor), they now think it is either MS or Transverse Myelitis. Even though I have most of the symptoms of MS, they are hesistant to give me a diagnosis of MS because I only have the one lesion in my spinal cord, and a venous angioma that was found on an MRI back in 2003, when I had similar symptoms. Symptoms have increased since last December. Have incredible weakness in both legs, must take frequent rest breaks, if I don't my legs will become so heavy and stiff that I can't get them to move. Also, have muscle twitches in arms and legs. Temperature sensitivity in right side, where if something cold touches right side, hurts like a toothache. Also have shaking & muscles in my left hand stiffen up when my hand gets tired. Also have bladder retention & frequency, and just recently have experienced cognitive issues (short-term memory problems, trouble expressing myself with words, word-finding issues, and difficulty in doing simple puzzles). Had spinal tap which showed oligocolonal bands (possible indicator of MS), Evoked Potential studies were normal. Have been hospitalized twice since February, but still no possitive diagnosis. Becoming frustrated because symptoms have become much worse since December, and I don't know if they will put me on any MS drugs if I don't have definite diagnosis. Please write me and tell me of your experiences. Looking forward to hearing from the group!

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by LGK54, Aug 23, 2008 09:55PM
I'm smiling because our lists of medical tests look pretty darn similar.  I hate this "diagnosis by elimination" process but it appears that is what we are stuck with.  My LP is early September.  As I understand it, there is no way either one of us will get DMD's unless the neuro is willing to comit to a definite MS diagnosis.  

Yes, it requires tons of patience to be a patient.

Be well,
Laura

by Cookie9278, Aug 31, 2008 04:10PM
Laura,
Thanks for the welcome note and the comment to my journal entry. If you don't mind, could you tell me a little about what tests you have had, what your symptoms are, and what your diagnosis might be. Had a visual evoked potential test on Wednesday, no results back yet, but diagnosis on referral sheet said left RAPD, do you know anything about RAPD?

Take Care,
Cathy

by Brenndy, Aug 31, 2008 04:17PM
Hi Cathy,

Welcome to the group.  MS is a debilitating disease.  I've heard only (no firsthand knowledge) of gabapentin aka Neurontin for nerve pain.  May want to look it up, and definitely stay in close contact with your physician/s.

Evoked potentials -- wow girl.  You are a stronge one.  I've experienced, as well as witnessed, almost every medical test there is in my 25 years working in healthcare, and that has got to be one of the most painful, discomforting ones.

Keep on top of things.  Hope you prevail.  

by iwojima, Sep 03, 2008 11:01AM
to hi everyone,  my son was hit behind the ear with a paintball when he was 15yrs old 3 wks later he had a stroke he has since recovered . he's 25 now , 2 yrs ago he woke up with numbness in one arm DR gave him muscle relaxer which he didn't take, they sent him iN  for an MRI a spot was found in his spine . that DR first said MS  he sent him to another specialist he said TRANSVERSE MYELITIS  he has some weakness in his legs somtimes not often he has an appt on sept 15 with the neurologist' .i'm so sorry you're going thru this i hope you have a loving mother to support you  so hard to see our children suffer. my  last two kids get things i never heard of  my youngest daughter has kyphosis a curviture of the spine,  well good luck sweetheart .

by Rena705, Sep 03, 2008 11:56AM
Wow...Cookie you have really been through the ringer on this one haven't you?  I am so sorry that you have had to undergo all that testing and you still don't have a solid answer but that seems to be the story for most that are looking at the possibility of an MS diagnosis.  Have you had a chance to look at the Health Pages on the MS forum in the upper right hand corner.  There is a plethora of information there regarding testing, test results, what sort of doctor is best and what tests should be done while searching for a possible MS diagnosis.  There are many mimics as well to MS and that can make getting a diagnosis that much more complicated.  There is a section in the Health Pages as well on O-Bands and how they are read to diagnose MS or rule out MS that you may find interesting.

May I ask if you are seeing a neurologist or an MS Specialist regarding these symptoms?  Have you been put on any medications for nerve pain etc.?  There are several medications that are in the family of anti-seizure meds that have been known to help many with nerve pain, i.e. Neurontin, Tegretol, Topamax, Lyrica and then there are the steroids.  Usually if a severe relapse happens, a neuro will prescribe IV Solumedrol with a tapering dose of Prednisone.  Most people find this very helpful to alleviate the pain and other symptoms of a relapse.

You have to remember that even if you don't obtain a definitive diagnosis right now that if it is MS it is imperative that you have follow-up examinations and MRI's with either a neurologist or an MS Specialist.  MS is a disease that can continue to wreak havoc on your brain and you don't know it until you have a relapse and this is why it is important that you are followed closely.  Lesions on your brain are not direct indicators of active disease so even if there are no lesions on your brain on MRI now, there could very well be lesions there that are not visible with MRI and there is still damage being done.

I don't know if anyone has advised you but you should keep a detailed timeline of your symptoms and start a file in which you can keep copies of all the test results that  you can obtain.  You are your own best advocate in this journey to find a diagnosis and these tools are your best friend when it comes time to see your doctor.  Most of us have cognitive difficulty and a timeline is invaluable as we all tend to "forget" at least one important thing until we leave the office...this way you can make a copy for the physican to put in your file and a copy for yourself so you don't miss any details at your appointments.

I hope this has been of some assistance for you Cathy but please don't hesitate to post on the MS forum should you have any questions or concerns.  We are here 24/7 and unless you get us at a slow time we can usually get back to you within an hour or two.  Should you need to rant, rave, laugh or cry, we are here for you ok?  MS can be debilitating but with the proper care and follow up most people are never confined to a wheelchair so don't think of this as a horrible sentence...we can help you through this and you just might make some fine friends along the way as I have.

Lots of Hugs,

Rena

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