tanda156
10-27-2006, 02:18 AM
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
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
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dgibson70
10-27-2006, 09:24 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!
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, 09:56 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, 05:51 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, 12:00 PM
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
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
duttin
10-29-2006, 02:00 PM
Tanda,
Many DRs like to chalk everything up to anxiety, depression or stress.When I went and seen the third neuro I stated to him that I didn't want to be dismissed or treated as if I were crazy.And before he even considered stress anxiety or depression,I give him the explanation why wouldn't a women of 4 kids,a wife be stressed,we take care of the home,pay bills ,do the running,listen to the kids complain,listen to hubbys complain about there job and everything else.Why wouldn't we have the 3 above.And if this was what he was considering.I wouldn't waste his time.Needless to say he's an awesome neuro.
I had an EEG,they are okay test usually used to rule out seizures and epilepsy.
They have however realized you suffer from myoclonic jerks thats a neurolical deficit somewhere in the central nervous system.Its not unreasonable to have an elevated ANA and white blood count in the spinal fluid.This shows theres inflamation in the CNS.
MS can be present in the lumbar and thoracic area.Its good that your DR is checking these areas.
Not all lesions are detected by MRI,micro lesions can be detect through evoked potentials.Visual,samotosensory(spinal), baer(brain stem).
You definatly have a list of neurological symptoms,your Dr has not dismissed you if wants to keep you monitored.It took me 2 years to get a DX.
Have you read you MRI reports yourself?Its good practice to get copies of all your test and DRs. notes.
Remeber your not crazy,your symptoms are real.You know your body best
Many DRs like to chalk everything up to anxiety, depression or stress.When I went and seen the third neuro I stated to him that I didn't want to be dismissed or treated as if I were crazy.And before he even considered stress anxiety or depression,I give him the explanation why wouldn't a women of 4 kids,a wife be stressed,we take care of the home,pay bills ,do the running,listen to the kids complain,listen to hubbys complain about there job and everything else.Why wouldn't we have the 3 above.And if this was what he was considering.I wouldn't waste his time.Needless to say he's an awesome neuro.
I had an EEG,they are okay test usually used to rule out seizures and epilepsy.
They have however realized you suffer from myoclonic jerks thats a neurolical deficit somewhere in the central nervous system.Its not unreasonable to have an elevated ANA and white blood count in the spinal fluid.This shows theres inflamation in the CNS.
MS can be present in the lumbar and thoracic area.Its good that your DR is checking these areas.
Not all lesions are detected by MRI,micro lesions can be detect through evoked potentials.Visual,samotosensory(spinal), baer(brain stem).
You definatly have a list of neurological symptoms,your Dr has not dismissed you if wants to keep you monitored.It took me 2 years to get a DX.
Have you read you MRI reports yourself?Its good practice to get copies of all your test and DRs. notes.
Remeber your not crazy,your symptoms are real.You know your body best
mackiet
10-29-2006, 02:27 PM
Tanda,
Wanted to see how you were making out. Concerned and hopeful that you will keep searching until you find a medical professional who will not stop until you have a solution.
Let us know.
Wanted to see how you were making out. Concerned and hopeful that you will keep searching until you find a medical professional who will not stop until you have a solution.
Let us know.
helenuk68
10-30-2006, 07:50 AM
dear tanda156,
i know how you feel i have been experiencing the same things as you and have been for the past eight years and my consultant at my local hospital has just told me i have a lot of abnormalties in my mri scan and they said it looks like ms i am still waiting to go see the neurologist in januaryto have it confirmed.
just want to know why it has taken them so long to find out what was wrong.and explain why i was taken into hospital with stroke like simtoms up to three time a year and lasting 15 days or more .at first when i had medical tests and monitored everything was normal or slightly out and they tried to blame it on stress just keep on and get them to repeat the tests.
good look.
regards helenuk68 x
i know how you feel i have been experiencing the same things as you and have been for the past eight years and my consultant at my local hospital has just told me i have a lot of abnormalties in my mri scan and they said it looks like ms i am still waiting to go see the neurologist in januaryto have it confirmed.
just want to know why it has taken them so long to find out what was wrong.and explain why i was taken into hospital with stroke like simtoms up to three time a year and lasting 15 days or more .at first when i had medical tests and monitored everything was normal or slightly out and they tried to blame it on stress just keep on and get them to repeat the tests.
good look.
regards helenuk68 x
Lisa_P
10-30-2006, 10:57 AM
If it helps, I was never actually told I have MS, they just sent me home with Avonex after my neuropsych exam... That was a day of verbal and visual tests, tests to check hand-eye coordination, etc. and more tests-- I was SO tired at the end! (I found out I was so high functioning in some areas that the average and low average results felt like total LOSS to me. It is NO consolation to be told "average" is still GOOD in the real world.) That was after the MRI, LP, and numerous ophalmologic tests (it was my third bout of optic neuritis--which I know is not the case with you.) I've never had these "evoked potentials" tests so I don't even know what they are...
I would tell you to find a neuropsychologist.... But a regular neurologists can administer these tests as well.
I would tell you to find a neuropsychologist.... But a regular neurologists can administer these tests as well.
tanda156
11-02-2006, 12:39 AM
THank you everyone. It is such a relief to know that others are out there that don't think I am a nut job. I went to see my GP Monday and she said that she didn't think that it was anxiety. She talked to the neuro and they are going to do a lumbar mri now and they want to do a sleep study to see if I have periodic limb movement disorder. Doesn't explain to me the burning and numbness but I'm game. The thing is I am feeling 100% better. Considering these symptoms lasted about 1 month. I just feel its a mute point now that I feel better. I am not twitching or jerking and haven't had any burning since last Monday. So.... Can anyone tell me what an evoked potential test is and if I should ask my doctor for one? With everyone saying anxiety I don't want to go in and say hey I know that you can't rule out MS just because everything else is okay so I want an evoked potential test done:)