Newbie really needs help with questions

[EPoland]

Hi everyone, This is my first post here. I need some help. I'll give a little bit of background and then get to my questions. I apologize for the length and my spelling.

On January 9th, 2009 I noticed some numbness in my thigh. I blew it off to having rubbed my leg funny while walking earlier. The numbness progressed quite a bit. By Sunday night I was feeling an odd pinching feeling in the backs of my legs and my back hurt. When I got in the shower I noticed that my skin felt "creepy" and "dead" on my right side when the water hit it. I also couldn't really feel the temperature of the water. My husband, an RN, poked and prodded at me and we assumed I had a pinched nerve. So I went to my GP on Monday morning. He instantly said it can't be a pinched nerve because it is only on your right side and you're numb from toes to collar bone. He mentioned MS. I freaked out. It was VERY hard getting an appt. to see a Neurologist in my area. I drove an hour and a half away to see one and it was a bogus appointment. Complete waste of time. My GP's office made 3 appointments with me and said I was on a fall off list. Basically, they would keep moving my appointments up as people canceled. I finally got in to see a wonderful Neurologist in early February. She poked me with a sharp pointed stick looking thing and wrote down very detailed descriptions of the areas of numbness and loss of sensation. She repeatedly asked if I had hurt my neck some how. I said no. So she sent me off for a high resolution MRI of my cervical and thoracic spine. We get the results back a week later and she is quick to call me in for another appointment. They are absolutely normal. No cloudiness, no swelling, nothing. So she examines me again. At this point it's been about a month since the numbness started and it seems to be going away. While I can feel things again the sensation isn't the same on my right (more numb) side than my left side. Which was something I actually did not notice until she did the exam and pointed it out. So she tracked where exactly the numbness started, ended, what felt the same or different, etc. Then she has me stand and put my feet together, arms straight out in front of me and close my eyes. I was okay until I closed my eyes; then I basically fell over. It was this incredibly odd sensation of losing my balance without even moving. She explained that it was because without my eyes seeing where I physically was, my brain didn't know where I was. Oooookay. So based on all of that she sends me for a high resolution brain MRI. I get called in a few days later and she tells me that there are several small spots of dymelentating process in my brain. She says they are so small she's never seen an MS patient with lesions that tiny. So she says she is 50/50 on this and decides I need a spinal tap to make the final decision on what it is. I attempted 3 times to do it but between work, lack of communication with the office, etc. it kept getting canceled. I finally had it done at the local hospital under an x-ray last Friday.

Other information that may be helpful...I'm 24. I have all of the following symptoms:
*My vision will occasionally blur randomly.
*Occasional muscle weakness. I felt VERY weak the first week of my numbness. It improved dramatically after that week.
*I will often wake up and it really hurts my feet when I walk.
*I occasionally slur my speech.
*My muscles "jump" a lot. Especially in my arms, legs, and face.
*I had major balance and coordination issues that first week as well.
*bowel urgency
*I do not tolerate heat at all. I almost instantly feel sick if I take a hot shower or am in a room/outdoors that is more than 75ish degrees.
*acid reflux

So here is where I get to my questions....

So far I have received only a few of the results from the spinal tap. I'd actually really like to know what exactly they test for with potential MS patients. I should have asked that. Does anyone know?? So far my ANA is negative, something to do with Lupus was negative, syphilis is negative, IgG is pretty much right in the middle of the normal range, but my oligoclonal bands are a level of 9. From what I understand if you have high bands and a high IgG then it is almost a for sure thing that you have MS. What can it mean if the IgG is normal but the bands are pretty high?? What happens next? I don't see my doctor again until April 24th which is forever away. She's out of town so she can't even see the results until next week. I'm not completely freaking out but it would be very helpful to hear from someone who has had these tests done and knows some information about them. Google isn't very much help to me right now.

Thanks so much

- E

[essdipity]

Welcome to the forum. We'll do our best for you.

PastorDan gave you good info about LP testing, but you need to wait to get the entire report. MS is a diagnosis of exclusion, so a lot of other possibilities have to be ruled out before there can by any certainty. My advice is to gather all the records of tests you've had since the symptoms began, and keep them at home. You need to be your own health advocate, and that's one way of doing it. If you decide you'd like the opinion of another neurologist, you will have everything prepared so that tests won't have to be repeated. Make sure you have all your actual MRIs, not just their radiology reports. What blood work has been done, and were you tested for Lyme?

Of course you should read our health pages. There's a lot of valuable info there. Please keep posting and let us know how things go. If you do have MS, you'll find this is the best group on the web.

ess

[Tahiri_Veila]

I am about your age and have dealt with an unknown set of symptoms for a few years.  First realize that they run a lot of tests to rule out other causes for your symptoms. Yes MS is a likely possibility, but there are many things out there that mimic it and it can take a while to get the final answer.  I have been searching for answers for over 3 years and still don't have an answer.  

Be patient.  I know that sound awful, but I have found that when I get worried or impatient things just tend to get worse.  I agree with Pastor Dan, read the health pages they will give you more information on MS and the procedures that you may go through.  

Hang in there. We are all here for you.

Tahiri

[EPoland]

Thanks so much for responding! I forgot to mention that there were no bands in my blood. I had heard from a few people on another forum to make sure they did the blood work within an hour of the test so I constantly reminded the nurses. Which was a good thing because they had no clue I needed it done. They took blood twice. First time was about 20 minutes after I was back in the room and then 20 minutes after that.

Thanks for your support. I'll read the McDonald Criteria right now.

If anyone else has any input I would really appreciate it. Thanks!

[PastorDan]

You might guess from my screen name that I'm no doctor, but I would like to welcome you to this assorted group of wonderful folks.  You'll find the overwhelming majority of the people here to be caring and supportive, and usually quite well informed.  Much of that information is what we've shared with each other, but the bulk of the credit has to go to our great Community Leaders, whom you'll meet if you stick around any time at all (which I hope you do).

My initial response to your initial post is that you need to be sure that the lab took blood at the same time as the spinal tap.  The number to watch is the difference between the number of O-bands in the cerebrospinal fluid and the number of O-bands in the blood serum at the same time.  Nine O-bands in the CSF isn't significant (I don't think; remember I'm no doctor) if there were nine detected in the blood serum at the same time.

You might want to peruse our Health Pages, accessed via the link at the upper right of this page, with the little yellow icon next to it.  One you'll want to look at in particular is the one that describes the McDonald Criteria, the nearest thing there is to a formal rule that describes when to call it MS and when not to call it MS.

Blessings to you & yours, and thanks for joining us.