I know that I am not crazy. - Multiple Sclerosis Message Board

tanda156 · 10-26-2006, 11:18 PM

Hi
Well, let me start by saying that for years I have had anxiety. Not crazy anxiety or anything that has ever caused any problems, but anxiety. I was given Adavan by my Dr. and still have almost half the bottle and that was in February.

Well, Sept. 25th I had numbness in my right arm, my first response was that I have had a problem with that shoulder for over 4 years. Well the next day I had it in both arms and was light headed. The 3rd day it was back only in my right arm so I called the Dr. To make a long story short. The symptoms went like this.

25th- Numbness in R arm
26th- Numbness in B arms and light headed
27th-31st numbness and some burning in R arm
1st-7th BURNING (Bad) and numbness in both arms
5th-8th Legs started jumping bad at night w/ arm symptoms
9th- 11th no real symptoms, occational tingling
12th Right hand shaking to the point I couldn't lift anything had to steady with left hand
13th no real symptoms
14th Woke up with muscle spasms (jerks) Went to ER gave me lots of muscle relaxers- Right hand was shaking like before whole body jerks
15th-24th Jerks sparatic seem to decrease every day
23rd Woke up at 12:00pm with extreme burning in R arm

25th and 26th no symptoms

I seen my Dr. she had me do an MRI on my neck shoulder and brain. Shoulder has to have surgery for a slap tear but she says that wouldn't cause other sympots and refers me to a nurologist. ( At the beginning of this year I had my ANA's( anti-nuclear antibodies),SED levels(shows inflammation), and my Thyroid antibodies were all elevated. Retested 1 month later and they were neg. When my symptoms started my ANA's were elevated slightly again.

When I went to the ER after 5 hours of Jerks the DR. told me it may be all in my head.

I seen the nurologist and they did a spinal tap and blood work. All the tests came back fine exept he said that I had an elevated White blood count in my spinal cord. Then starts talking about my anxiety again. The things is when i am really anxious-kids are all home and fighting- I would have no symptoms but then would wake up with them?? So it seems to me that they are just trying to put it off on my anxiety. It doesn't explain all the elevated test results either.

The Dr. called the "Jerks" Myloclonic seizures. They also did a EEG that is normal as well. I am scheduled for a MRI on my spine on Monday, I don't even know why. Says they will just have to monitor me for a year and wants to see me in a month.

If anyone has any help I wou.d appreciate it. I know that I'm not crazy, I don't know how to find out what all these tests levels being elevated means either. Thanks tanda156

dgibson70 · 10-27-2006, 06:24 AM

You're not crazy. Although I am not familiar with some of the tests being done on you, I can tell you what a neuro would do to test for MS. They'll do MRI's on your brain and spine looking for lesions. The spinal tap looks for o-bands - my understanding of these are elevated proteins in the fluid from the fluffing of the myelin sheaths in the brain (might be wrong on some of that). Anyway, they'll also do evoked potential tests. Lots of bloodwork too to rule out other causes such as Lyme or Lupus. Only one of these may show up as positive or all. In my case, I have brain lesions and a positive spinal tap. My doctor can only say probable MS as I have not yet had a 2nd attack.

Anyway, MS symptoms mimic many other things so it's hard to diagnose. It's more a ruling of everything else out first so it takes time. My advice is to not get too focused on one thing like MS as you might lose sight or miss altogether the real problem.

Good luck!

tanda156 · 10-27-2006, 06:56 AM

Well, that is my problem. They have done all of those tests and everything came back negative. The MRI the spinal and the blood work. They all came back negative for everything. Lupus, Rhumatory Arthritis, Thyroid, Diabetes, Lyme disease. Just my ANA's and the White Blood count in the spinal cord was elevated. Now they just sugest anxiety. My normal Dr. said that she didn't think that it was phycalogical because there had been significant changes over a period of time. She was the first one to bring up MS. Though I do not want MS, who does, I just want to know what it is and for them to stop telling me anxiety! Thanks tanda156

tanda156 · 10-28-2006, 02:51 PM

Thanks. I just wish they would take me seriously. I thought the "jerks" were gone and today they are back. I have to see my physician again on Monday. I hope she can tell me something else.

MSNik · 10-29-2006, 09:00 AM

HI Tanda. I just wanted to say that you arent crazy. Its really unforunate that you are getting the run around so much. I was really lucky, if you want to call it that. I had all the same tests as you, and a terrific Neuro, who referred me to a MS Specialist before he gave me the 100% diagnosis. The whole thing took me less than a month.Now I am on rebif, and just starting my "treatment" options. But, before you think that is too good to be true, let me also say that I had all the same symtpoms you did. And, most of them, I stll have. Having only been on Rebif a week, I dont see any diffrence in myself, but am happy to report that I am not having any rebif reactions! None. Not a one.
My left hand and fingers are still numb (neurontin helps with the pain, but doent seem to make any real difference overall) my leg still jerks. I kicked my cat out of bed last night, and now my husband only sleeps on my right side. All my symptoms seem to be on my left side..the muscle spams are constant. Im wonder if I am experiencing the MS hug in my left leg, feels like a really tight band is circling my calf muscle, but it comes and goes often...it may just be a muscle spasm. I dont know...
I feel awful for you, but think of it this way, WE know you are not crazy, and it does sound like they are doing all the tests that can be done. Remember, MS cannot be diagnosed by a test. It is diagnosed by ruling out anything and everything which mimics MS. You are at least ruling out the important stuff! Good luck, keep us posted.
nikki