dutchess99
08-10-2006, 09:18 PM
How many of you have been diagnosed with MS, but previously presented most symptoms and yet MRI was not specific or not showing any changes.
-I have had severe muscle weakness ( i am on 40 mg of prednisone and that is the only thing that is keeping me moving)
-I have uncontrollable muscle shakes
- I have times when I can't hardly move my arms or legs and they feel like lead
- I have unusual tightness in my neck, shoulders, and back
- I have facial tingling, arms tingling, and my legs tingling and start to fall asleep
-I have been to a rheumatologist and have had the full rheumy work up (ANA positive 1:1280)
-I am currently seeing a neurologist who is baffled with my case and is threatening to send me to a research hospital if he can't figure it out after he does the EMG and nerve conduction tests
Does anyone have any clues? Can you help me. I have had five MRI's in the last few months and have given so much blood for tests that I have scar tissue in my veins.
PLEASE someone help!!!!!!!!:blob_fire
-I have had severe muscle weakness ( i am on 40 mg of prednisone and that is the only thing that is keeping me moving)
-I have uncontrollable muscle shakes
- I have times when I can't hardly move my arms or legs and they feel like lead
- I have unusual tightness in my neck, shoulders, and back
- I have facial tingling, arms tingling, and my legs tingling and start to fall asleep
-I have been to a rheumatologist and have had the full rheumy work up (ANA positive 1:1280)
-I am currently seeing a neurologist who is baffled with my case and is threatening to send me to a research hospital if he can't figure it out after he does the EMG and nerve conduction tests
Does anyone have any clues? Can you help me. I have had five MRI's in the last few months and have given so much blood for tests that I have scar tissue in my veins.
PLEASE someone help!!!!!!!!:blob_fire
Sponsor
duttin
08-10-2006, 11:09 PM
Dutchess,
My MRI's for 2 years were clear.I had symptoms similar to yours.Has your neuro done a lumbar puncture or evoked potentals?There are so many disorders that mimic MS.
The EMG/NCS is a good test to help with the nerves and muscles.I wish there was easier test and answers to these neurological diseases.
Toni
My MRI's for 2 years were clear.I had symptoms similar to yours.Has your neuro done a lumbar puncture or evoked potentals?There are so many disorders that mimic MS.
The EMG/NCS is a good test to help with the nerves and muscles.I wish there was easier test and answers to these neurological diseases.
Toni
hkholwerda
08-11-2006, 03:36 PM
Dutchess,
I completely understand what you are going through. Last summer, beginning on May 27th, I had 9 MRI's, every blood teest imaginable, spinal tap, and was looked at by a ton of doctors. I had no movement is my right side (arm and leg) and had major problems with my memory and speech. Unfortunately, but good in a way, my Neuro spent me to a different Neuro (MS Specialist) for help. My attack was so severe, and the prednisone was no longer helping, that they did a brain biopsy. 8 days after my surgery they diagnosed me with MS. I started a CARB right away.
It has been a little over a year and I am doing great! I recommend finding a MS specialist (don't recommend the brain biopsy unless absolutley necessary :) ). The National MS Society website is a great place to find info, and doctor locations.
Keep up posted and best of luck :angel:
Holly
I completely understand what you are going through. Last summer, beginning on May 27th, I had 9 MRI's, every blood teest imaginable, spinal tap, and was looked at by a ton of doctors. I had no movement is my right side (arm and leg) and had major problems with my memory and speech. Unfortunately, but good in a way, my Neuro spent me to a different Neuro (MS Specialist) for help. My attack was so severe, and the prednisone was no longer helping, that they did a brain biopsy. 8 days after my surgery they diagnosed me with MS. I started a CARB right away.
It has been a little over a year and I am doing great! I recommend finding a MS specialist (don't recommend the brain biopsy unless absolutley necessary :) ). The National MS Society website is a great place to find info, and doctor locations.
Keep up posted and best of luck :angel:
Holly
dutchess99
08-11-2006, 10:25 PM
Thank you all for your replies. What is CARB? The neuro here said that if he couldn't figure out the answers he would be sending me to UAB a world renowned research hospital. I guess maybe that means a MS specialist?
KissAmeGal
08-12-2006, 10:19 AM
It sounds as though i am going through the same things you are. It started with my Ortho, who sent me to a Neuro, who did the MRI's and nothing showed up on them either. then went to a rheumatologist, who did ext. blood work and ruled out just about everything else. So i took it upon myself to go to a Neuro Surgeon, as i have Cervical Spinal Stenosis, looking to see if maybe i would need surgery, but he said no. I have seen him B4 in the past, and he has referred me to Neuro that SPECIALIZES in MS. I too have all the symptoms, but nothing on the MRI. I go to see her the end of Sept. My Rheumatologist did put me on Skelaxin, Tramadol and Advil.......that has helped me tremendously with the chronic pain, but it doesn't help my other symptoms. Hopefully this specialist will give me answers. she also works with the MS Foundation.
Will keep in touch
Will keep in touch
dutchess99
08-13-2006, 04:14 PM
They have done my MRI's with and without contrast. They discovered two Benign hemangiomas on my spine but say it is not what is causing all the problems. The doctor says I have developed muscle atrophy and the muscles in my legs especially are wasting rapidly. I don't know what to do b/c i have to wait til the 22nd for the EMG and muscle conduction tests. The doctor wrote on the reason for the MRI's "severe possible demyelinating disease" what does that mean? He thinks it is severe?:confused:
KissAmeGal
08-13-2006, 11:20 PM
for Nuffs3.............
your MRI's were clear for 2 years.........how did they finally diagnose you?? did it take for something to show on the MRI's? and what are evoked potentials??
your MRI's were clear for 2 years.........how did they finally diagnose you?? did it take for something to show on the MRI's? and what are evoked potentials??
dutchess99
08-14-2006, 07:55 AM
he wrote that as the reason for the MRI. They said nothing new showed on my MRI's. I am so confused, i think they are too at least that's what they say. All of my symptoms match but the actual "proof" hasn't been discovered. I don't want the diagnoses if that isn't what it is, I would like to know what is GOING ON!:blob_fire
duttin
08-14-2006, 01:10 PM
Dutchess,
Have you actually read the MRI report yourself?Hang in there the 22nd is coming soon.This test will give your neuro new information that may put all the peices together for you and your neuro.Your neuro is on top of things and thats a plus.
KissAmeGal,
They had to wait until something showed on the MRI's,the LP was high in myelin basic protein and the veps were borderline abnormal.VEP is a visual evoked potentals,this test is done to detect past optical neuritis and lesions in the optic pathways,not detected by an MRI.I also had a SSEP done,this samotosensory evoked potentials,this detects spinal lesions blocking the nerves that are not detect on a MRI or an EMG.
Have you actually read the MRI report yourself?Hang in there the 22nd is coming soon.This test will give your neuro new information that may put all the peices together for you and your neuro.Your neuro is on top of things and thats a plus.
KissAmeGal,
They had to wait until something showed on the MRI's,the LP was high in myelin basic protein and the veps were borderline abnormal.VEP is a visual evoked potentals,this test is done to detect past optical neuritis and lesions in the optic pathways,not detected by an MRI.I also had a SSEP done,this samotosensory evoked potentials,this detects spinal lesions blocking the nerves that are not detect on a MRI or an EMG.
dutchess99
08-14-2006, 01:43 PM
nuffs3,
I went to my chiropractor because he is a friend/honest doc. and he went over the MRI esults with me piece by piece( I personally get copies of all my MRI or test results b/c I like to look and see for myself) and then also told me my muscles were atrophying. They are wasting away (especially in my legs). He says that they are starting to show striations and the muscle tone is no longer there which would explain some of my tremors and shaking within my legs. Doesn't explain the numbness and tingling but it does explain the lack of muscle tone and inability to stand for any reasonable length of time. He also said he didn't think I would be able to work much longer. he thinks I won't make it to December ( I teach school). What do you think I should do?:confused:
I went to my chiropractor because he is a friend/honest doc. and he went over the MRI esults with me piece by piece( I personally get copies of all my MRI or test results b/c I like to look and see for myself) and then also told me my muscles were atrophying. They are wasting away (especially in my legs). He says that they are starting to show striations and the muscle tone is no longer there which would explain some of my tremors and shaking within my legs. Doesn't explain the numbness and tingling but it does explain the lack of muscle tone and inability to stand for any reasonable length of time. He also said he didn't think I would be able to work much longer. he thinks I won't make it to December ( I teach school). What do you think I should do?:confused:
hkholwerda
08-14-2006, 02:07 PM
dutchess99,
I was told by a Opthamologist (sp?) that I was dying of cancer last year when he looked at my MRI. He was totally off! I would hold off and see what your neuro says.
Good luck and keep us posted!
I was told by a Opthamologist (sp?) that I was dying of cancer last year when he looked at my MRI. He was totally off! I would hold off and see what your neuro says.
Good luck and keep us posted!
KissAmeGal
08-16-2006, 11:24 PM
Nuffs3.........i haven't had the VER or the SSEP done yet. Hopefully they'll will do those when i go see this Neuro that SPECIALIZES in MS. Nor have i had a Spinal Tap done yet. So yet still......i am hanging in Limbo til the end of Sept. ::::::::sigh::::::::: the waiting, i think, is sometimes worse than knowing.
KissAmeGal
08-16-2006, 11:25 PM
Dutchess,
Have you actually read the MRI report yourself?Hang in there the 22nd is coming soon.This test will give your neuro new information that may put all the peices together for you and your neuro.Your neuro is on top of things and thats a plus.
KissAmeGal,
They had to wait until something showed on the MRI's,the LP was high in myelin basic protein and the veps were borderline abnormal.VEP is a visual evoked potentals,this test is done to detect past optical neuritis and lesions in the optic pathways,not detected by an MRI.I also had a SSEP done,this samotosensory evoked potentials,this detects spinal lesions blocking the nerves that are not detect on a MRI or an EMG.
Nuffs3.........i haven't had the VER or the SSEP done yet. Hopefully they'll will do those when i go see this Neuro that SPECIALIZES in MS. Nor have i had a Spinal Tap done yet. So yet still......i am hanging in Limbo til the end of Sept. ::::::::sigh::::::::: the waiting, i think, is sometimes worse than knowing.
Have you actually read the MRI report yourself?Hang in there the 22nd is coming soon.This test will give your neuro new information that may put all the peices together for you and your neuro.Your neuro is on top of things and thats a plus.
KissAmeGal,
They had to wait until something showed on the MRI's,the LP was high in myelin basic protein and the veps were borderline abnormal.VEP is a visual evoked potentals,this test is done to detect past optical neuritis and lesions in the optic pathways,not detected by an MRI.I also had a SSEP done,this samotosensory evoked potentials,this detects spinal lesions blocking the nerves that are not detect on a MRI or an EMG.
Nuffs3.........i haven't had the VER or the SSEP done yet. Hopefully they'll will do those when i go see this Neuro that SPECIALIZES in MS. Nor have i had a Spinal Tap done yet. So yet still......i am hanging in Limbo til the end of Sept. ::::::::sigh::::::::: the waiting, i think, is sometimes worse than knowing.
hendrie33
09-07-2006, 01:27 AM
Your story sounds very familiar....
I was finally diagnosed when the MS was found in my spine in the
middle of my back (brain MRIs kept coming out fine). The spinal
tap confirmed it as well. You don't want to have a diagnosis, but
it really was a relief after everything I've gone through. It's good
to be on medication and be fighting back.
I was finally diagnosed when the MS was found in my spine in the
middle of my back (brain MRIs kept coming out fine). The spinal
tap confirmed it as well. You don't want to have a diagnosis, but
it really was a relief after everything I've gone through. It's good
to be on medication and be fighting back.
bleevr
09-07-2006, 10:46 AM
If you are really desparate you may want to consider alternative medicine.
Natural extracts such as Samento are reported to help (cure?) many conditions.
Check out www.samento.com.ec Find and read the Newsletter from October 2003. This bottle of drops can be obtained for as low as $33 a bottle and may really, really help.
Natural extracts such as Samento are reported to help (cure?) many conditions.
Check out www.samento.com.ec Find and read the Newsletter from October 2003. This bottle of drops can be obtained for as low as $33 a bottle and may really, really help.
lymegirl
09-09-2006, 12:53 AM
Dutchess
As you can probabally tell from my screen name, I post on the lyme board. I was dx with MS 6 years ago, and was dx with neuro lyme last year. Has it been lyme all along, I don't know?
Have any of your Dr considered lyme disease? It can cause lessions on the MRI whch are identical to MS lessions. Another similarity between the two is the wide range of symptoms.
Most Dr do not know how to treat lyme, and there are lyme literate MDs (LLMD) you can go to who know all to well how serious this disease is. There is specific labs which do more accurate testing. Testing for lyme is not always accurate, especially at one of the standard labs. A LLMD will evaluate you based on your symptoms. Lyme is not just joint pain and headaches. It can be very serious and gets into the central nervous system and has the ability to affect every organ, muscle and tissue. Muscle wasting is a symptom and I personally know people who this was one of their first symptoms.
I don't usually post on this board but I do read and I felt I had to respond to your cry for help. I don't want to offend anyone, or suggest that MS and lyme are the same thing. I am not saying that at all. I am not a Dr and these are two complex neurological diseases.
I am saying something because I wish I had know about the similarities and seriousness of lyme 6 years ago. Something you might want to check out.
Best of luck and if you have any questions don't hesitate.
As you can probabally tell from my screen name, I post on the lyme board. I was dx with MS 6 years ago, and was dx with neuro lyme last year. Has it been lyme all along, I don't know?
Have any of your Dr considered lyme disease? It can cause lessions on the MRI whch are identical to MS lessions. Another similarity between the two is the wide range of symptoms.
Most Dr do not know how to treat lyme, and there are lyme literate MDs (LLMD) you can go to who know all to well how serious this disease is. There is specific labs which do more accurate testing. Testing for lyme is not always accurate, especially at one of the standard labs. A LLMD will evaluate you based on your symptoms. Lyme is not just joint pain and headaches. It can be very serious and gets into the central nervous system and has the ability to affect every organ, muscle and tissue. Muscle wasting is a symptom and I personally know people who this was one of their first symptoms.
I don't usually post on this board but I do read and I felt I had to respond to your cry for help. I don't want to offend anyone, or suggest that MS and lyme are the same thing. I am not saying that at all. I am not a Dr and these are two complex neurological diseases.
I am saying something because I wish I had know about the similarities and seriousness of lyme 6 years ago. Something you might want to check out.
Best of luck and if you have any questions don't hesitate.
dutchess99
09-09-2006, 10:23 PM
lymegirl they did a lyme test twice and it came back negative. I would rather be that I have lyme disease, no offense, but at least it would have a name. I can fight better if I know what I am fighting!!!:blob_fire :blob_fire
lymegirl
09-11-2006, 10:17 PM
Dutchess
I also tested negative afew times. I had 2 spinal taps which were both negative for lyme. I found out later than lyme shows in the spinal fluid in about 5% of the people who are positive. As I mentioned in my post, lyme tests are known to be unreliable, especially those done by the standard labs who use inexpensive test kits and tests are not as thorough. The best lab for testing tick borne diseases is Igenex in Palo Alto, CA. They have a website. If you call them they will send you a test kit. Any Dr can sign for the test. It is the best money I ever spent.
I highly recommend seeing a lyme literate Dr. especially if you are still searching for a diagnosis. A course of antibiotics (specific abx at specific dosages) will be telling as far as your reaction to them. What do you have to lose?
I also tested negative afew times. I had 2 spinal taps which were both negative for lyme. I found out later than lyme shows in the spinal fluid in about 5% of the people who are positive. As I mentioned in my post, lyme tests are known to be unreliable, especially those done by the standard labs who use inexpensive test kits and tests are not as thorough. The best lab for testing tick borne diseases is Igenex in Palo Alto, CA. They have a website. If you call them they will send you a test kit. Any Dr can sign for the test. It is the best money I ever spent.
I highly recommend seeing a lyme literate Dr. especially if you are still searching for a diagnosis. A course of antibiotics (specific abx at specific dosages) will be telling as far as your reaction to them. What do you have to lose?