Before I start, I'd just like to say thank you to this community for being open and supportive to all. I'll just make it clear that my doctor told me yesterday that I don' t have MS. He found results of an MRI I had with a previous doctor from 2009 that said everything looked fine (without some sort of contrast? or something). My question is: HAS ANYONE HERE THOUGHT THEY HAD MS ONLY TO BE TOLD THEY DIDN'T and then later found out that actually you do have MS? My symptoms are so similar to what I've read about MS. I have episodes; they used to be twice a year and last a few days. Now in my 35th year of life - I'm having episodes more often and this last one lasted almost 3 weeks. An episode starts with a shaky feeling all over, weak knees, crying, difficulty thinking, talking, walking. For about 2 days I have intense tingly legs, pins and needles like,with what feels like energy surges running through me. I get muscle spasms in muscles all over my body, along with shooting pains that are intense and only last a short time. I'll get weird things on and off like uncontrolable laughing for no reason or the same with crying. Then I get this weird walk where I look like an old lady and am slow and crooked for days. Then I get the soreness, fatigued muscles, mostly in my legs, some in my arms, where its difficult to walk up stairs, move, walk; it feels like I ran a marathon the day before. I have frequent need to urinate and difficulty passing bowels or holding them. (I know this all sounds very strange but its very real.) And then slowly I come back. I still have residual symptoms: blurry vision and staring episodes, chronic burping, a burning rash, teeth grinding, I'm sure I'm forgetting something. Sometimes an episode is plagued with vertigo, severe headaches, vomiting. Yesterday when the doctor told me again (I've been seeing him for 18 months and he's convinced that I'm nuts) that its a mental health issue. I asked "But why the slurring?" His response with that little smirk I can't stand was "Well maybe you should stop drinking alcohol so much." Was that his meager attempt at humor feeling insufficient because he's unable to help me? I'm going to see 2 neurologists. I need help with some sort of diagnosis. For the passed several years, I have had these episodes at work, had to miss a number of days, and had to try and explain the situation away. I actually just wish for some kind of diagnosis so that I could tell the world: "I'm not crazy. I get sick." To keep the conversation on, feel free to visit my blog where I'm documenting my experience and looking to start conversations. Thank you. Please respond. http://healingwithpeace.blogspot.com/
Unfortunately there have been many MS patients who were told that their symptoms were psychological, that their disease was "all in their head."
I'm glad to hear that you will be seeing another neurologist. Getting a 2nd or 3rd opinion can be an excellent idea.
The trouble with diagnosing MS is that there are specific criteria and guidelines to follow. Early in my disease, I didn't fit the criteria and went on my merry way knowing that developing the disease was a possibility in the future. It was years later that I did receive that official diagnosis.
Sometimes it helps the doctors if we document our symptoms. What are they, when did they happen, for how long, what made them go away (if anything), etc. Maybe look for patterns yourself so that you can point them out to the doctor.
Make sure that you have had MRIs of both your brain and at least the cervical spine. This should be done with contrast which is injected into a vein mid-way through the MRI procedure. Lesions can still be seen even without the contrast, but the constrast lights up any active lesions which is helpful in diagnosis.
It's a tough road for some trying to find an accurate diagnosis no matter it's name. Hang in there and reach out for support. We're here when you need us.
Thanks Lisa. You are full of good advice.
I'm doing acupuncture right now and that seems to be quite complementary to my health at this current moment (I'm planning on posts my experience on my blog soon http://healingwithpeace.blogspot.com/)
I also am journaling symptoms, etc as you describe. Its actually am interesting learning experience for me. So I'm going to start advocating for myself more as I see these neurologists.
What I did want your opinion of was the MRI stuff? So first of all the MRI of my brain was w/o contrast I believe. Also my cervical spine MRI showed up with Degenerative Disk Disorder, siting osteophytes or bone spurs on my C2 and C3. Anything you went through prior to diagnosis?
I was getting acupuncture before I received my MS diagnosis and for awhile afterwards. I forget now why I quit going...may have had to do with time or money. Please do blog about it. I'd love to hear more.
Also, it would be very fascinating if you might talk about Reiki a bit more. How exactly does a practitioner do what they do?
With your MRI it does sound like they found something - degenerative disc disease (ie. arthritis) with bone spurs. If they're in just the right places, putting pressure on the spinal cord or nerves exiting the spine, then those bone spurs can cause any number of problems. Some of those symptoms might be similar to MS symptoms.
It is very common to find some degenerative changes even in someone in their 30's. I have a bit as well, but fortunately there is nothing putting pressure on the spine from it.
As far as my MRIs went, it is a long story but I'll try to be brief. My first MRIs (when I had optic neuritis) showed nothing in the brain. No lesions, but there was inflammation around the optic nerves. We didn't look at my neck at the time.
Years later in my next set of MRIs looking at my neck, we didn't use contrast at first and one significant lesion was seen. I was referred to a neurologist who repeated the MRI with contrast and included both brain and cervical spine. The brain was still clear.
It was on the next set of MRIs that two new (small) lesions were seen in the cervical spine and that's when I finally got the diagnosis. Before that we had also done a spinal tap (which was positive for O-bands) and did evoked potentials testing which confirmed damage to the optic nerves. But it wasn't until additional lesions were seen that I was diagnosed.
If no lesions had been found on the first look at the cervical spine, the mild degenerative disc disease MIGHT have been blamed for my symptoms at the time. I can't really go back and know for sure. But I do have lesions mostly in the C4-C7 area. My brain is still clear, without lesions.
Does that help any?