After I had Meghan (she's 4 mos old now), I had this unexplained severe itching (daily I would scratch my back with my brush to relieve symptoms for just a little bit - neither antihistamines nor topical steroids helped). They ran a bunch of tests on me and never could explain it. It finally went away on it's own and I thought it was a weird post-pregnancy thing.
A month ago, I started having the oddest sensation. It was just below my right breast - felt hot & burning. Like if I were to put my hand on it, I should feel something inflammed and sticking out of my body. But the skin felt normal to the touch. They ran some blood tests (I suspected a stone in my liver since I had my gallbladder out a couple years ago) but they all came back fine. I still had the feelings though. My dr wanted to just send me pain medication. I said, "1. it's not painful, just really really weird and 2. I'm breastfeeding and don't want to take pain meds unnecessarily". So then he went to the other end of the spectrum and ordered a thoracic spine MRI. I come out of there and his nurse tells me that he wants me to go see a neurologist and have another MRI of the brain and entire spine. I asked what he was looking for and she said he wanted to rule out MS. I thought he was nuts. Then I went into panic mode while I played phone tag, wanting more information like what exactly did the MRI show and why does that make you think it's MS and doesn't it usually take YEARS to diagnose someone with MS? But I somehow ticked the nurse off and got stonewalled. So I kept the neuro appt - I'd convinced myself by that time that it was just a pinched nerve. Because the feelings go away if I change positions or if I'm in the water (I swim for exercise). I seriously thought I'd be laughed out of her office on Saturday. Nope, she said because of the location of the spot (spot on T7), my age and symptoms, she was fairly certain this is MS. Then she went into treatment options and how the disease can progress, etc. for 45 minutes. On my release paperwork, she marked MS as a diagnosis and on my test forms she put "dx: ms". I was barely able to drive home, I was such a wreck. But she has the personality of a piece of bread so I want to see someone else (course the first appt for the one I've been recommended to is late Sept).
I have also developed back pain, some small balance issues, more fatigue than I remember having with my other two babies and numbing sensations down my right leg. And of course, permanently red, blotchy eyes as a side effect of crying. As I type it all out, it seems like, "how much more plain can it get?" but at other times, I talk myself into believing that these two doctors are quacks and I need to see someone who knows what they're talking about.
I'm claustrophobic and have a very long MRI (closed) tomorrow at 4:15pm CST and a spinal tap next Weds at 10am CST. I know it's silly to be so scared of them but I am.
Has anyone ever been diagnosed this quickly? From everything I've read, they're really really rushing things here. What's the use in getting the spinal tap? For diagnosis only? From what my neuro said, I can't get meds unless I have two or more spots/lesions so what good would a spinal do except slap a name on what I have? Does it really do me any good to get it if I only have one spot?
Good grief, Malapert! If you're one of the fortunate ones that does get a quick diagnosis, praise the Lord!! I was one of the fortunate ones, maybe because I was pretty forceful in saying what I wanted done, however, there seem to be so many more that are in limbo for YEARS!!!! If it is MS, get on the meds and slow or stop the progression of the disease!!
Sometimes a lumbar puncture is used to extract spinal fluid in which doctors may find proteins associated with multiple sclerosis.
Consider yourself lucky for getting diagnosed so fast. I have been dealing with symptoms for 9 months now and the dizziness is about to take over my life. I know your are probably thinking how do you consider me lucky. I think it helps you psychologically to know exactly what is wrong with you. As for the MRI, I have had 4 recently in a closed MRI and they are not that bad. The absolute best thing to do is pray and get as many people as you can to pray for you. I did this and when I went into the MRI, a sense of calm came over me and it helped me so much. The Lord was there with me helping me through it and he will help you too. I feel the same way about the lumbar puncture. Why have it done? I'm debating on having one of them myself. Good luck and remember hand it over to the Lord, he will do your worrying for you.
I feel for you, especially having a young baby. My third child was 6 months old when my symptoms first began. It started with my eyes, so the opthomologist was the first to say the word ms. I was in shock! Total waiting time for a final dx. was about a month, just because of having to wait on appts. and tests, etc. Do ask for xanax or something like that to get you through the tests. It really helps take the edge off. Also, mild depression is very common in ms AND in finding out you have a chronic disease of any kind. I know you're breastfeeding, so that makes it tough to take meds, but it something you might dicuss with your doc. If you do have to give up bf in order to take the meds, at least you'll be better able to care for your kids. My older two were 2 and 7 at the time. It's not easy. I hope there's someone there to help you through this and help you take care of the family. My thoughts and prayers are with you. I know how scary it is. Just remember, that you will get through this. The LP sounds awful, but isn't any worse than getting a whatever you call that thing when you're in labor (I'm having a word block). I know it's different cause childbirth is so rewarding and an lp isn't, but hey girls, if we can get through labor, we can get thru anything, right??? Sorry this is so long. Hope it helped. Sue
Thank you all soo much! I really appreciate your fast and thoughtful answers. I had my VEP today and I'm sure that will be the easiest test to do. Very nice nurses - one even gave me a hug. I think I'll call my dr for results on Monday (unless I hear back before then) and see what shows on my MRI (tomorrow) and the VEP and see if I really need to go through the LP.
Malapert, both of my MRIs were closed and I was apprehensive. The c-spine was first, I had to fight back a little panic but it was quick so I was able to control it. It also helped that I've done indoor tanning, it isn't all that different! For the brain where I knew it would be longer I just kept my eyes closed and pretended I was in some sort of massage thing (the buzzing and such). Was just starting to nod off when it was done.
I had my son in 1975, don't know if they did epidurals then, but I didn't have one. I can tell you, however, that the needle they use for the LP is almost thin as a hair (I asked to see it AFTER it was done!) The most important part is laying flat afterwards (don't be in a hurry to get up) AND to avoid movements that will prevent that teeny tiny puncture from closing up completely. Keep your back straight and your head up for a couple of days. I had no meds for either procedure, but encourage you to ask for them if you are at all panicky.
If you look at some MS sites on line you can find diagnostic criteria. You need a certain combination of "hits" to get a dx, an LP might not be necessary.
I'm leaving EARLY in the morning for Megafest in Atlanta. I'm taking a list of people for prayer, many of the angels from this board. You will be on my list!
Well the back pain is actually an aching in my middle to lower back. Oddly enough, it hurts when I'm sitting too long or bent over (nearly kills me to lean over my baby to change her diaper). I'm not sure if this is a related symptom or something seperate like a lumbar issue.
The burning sensation moving around my right abdominal area and then into my back and right leg can hurt as well but mostly just feels like there's some internal organ inflammed, bulging and hot. But there's nothing to the touch. But putting a cold hand on the spot can be quite calming which I find odd, if it is neurological. Hmmm..
Also, I made it through the MRI!
This time she talked to me during the test (ok, this scan will be 2 minutes....this one will be 4 minutes and then we're done, etc) and I had an Ativan beforehand. Her talking really helped. It wasn't as bad as before, that's for sure. Thank you all so much for your prayers and support.
If this test is abnormal and the VEP is positive (or negative - whichever one equals "bad"), I'll be asking what good a spinal would do. If it won't change my treatment or diagnosis, I will try to pass on having it done.