Aa
Testing is over for me
I have had symptoms of MS since I was 27 now 47. Every few years they get worse and go away. Now they have stayed. Have had 3 MRI's 2 came out negative this last one is positive for demyelinating. Had a spinal tap came out negative. My Neuro DR said I should not worry and go one with my life. My question I have taken steriod shots in my spine before the spinal tap could it have caused the test to come out wrong? My memory and facial numbness, leg numbness, and arm numbness and walking troubles are driving my crazy!
Hi Quix, thanks for your information.
I will see if I can answer your questions.
I had an MRI of the cervical spine found a lot of inflammation. That is why I had the steroid shots. It brought the inflammation down, when the shot was done in my thumb my hand and thumb swelled twice it size. The orthopaedic wants to do another MRI after a few months to see if anything else pops up.
My husband's friend and boss is a retired eye surgeon. He is going to do the VEP no charge. He has referred me to a MS Neuro DR. I will call Tuesday and set up an appointment for earlier than February.
The Neuro I went to did a spot check. I found out I won't be walking on a balance beam (like he had to tell me). I ended up getting a big bruise on my left arm when I fell against his wall. Mr reflexes in my right leg are week and sometimes not at all. Now for the muscles that is hard to check. I am (use to be) a dancer and a weight lifter. I won a jitter bug contest the day before I had my son. I can tell I have loss muscle but now I am like a normal person. As I have been told.
My endocrinologist did a complet blood work up. 15 viles were taken she checked for everything. Everything came out great except a low vitamin D.
I do get inflammation real easy lately. When I had the heart cath I woke up screaming in pain. I had inflammation so bad that it entrapped a nerve.
Had the nerve test. That hurts. I ended up with inflammation in my thumbs, the left thumb has recovered but the right thumb is still inflamed and probable will need surgery to release the ligament so I can bend the thumb had the test in August.
I like been cold in the summer heat here in Texas. It sure helps with the elect bill.
I don't think I'm to far advanced.
I'm just frustrated with the quality of care around here.
My sister is in a nursing home now. But if it wasn't for her volunteering to test the MS drugs they probably would not be out right now.
Now her MS is very advanced. She is 65 and has to eat with a feeding tube, her eye sight is gone, she has to wear a brace to hold her neck and back up. I talk to her every once in a while. When the nurses let her come to the phone. I understand it is hard to wake her and then have to brace her and then hold the phone for her.
I'm a little upset with hospital. Went there last year. My dogs woke me up I passed out in the kitchen. Hit my L elbow. Checked my sugar everything was good. I have been dizzy ever since then. Ended going to the hospital a few days later. Could not move my L elbow. They did an xray of the elbow went ahead and braced it. Not one dr did anything to find out why i passed out. I have no memory of before the passing out of that day.
On the brain MRI, I'm not sure what it is called but something is pretty advanced for someone my age. There are times I feel like I am 93 and not 47.
Need to go I'm going to try to help my husband paint the bedroom. This is going to be fun. He has a chair set up for me and a roller. He doesn't want me to loss my balance when I look up and fall in the paint. That would be a sight.
I have two friends with MS
one is very advanced and the other if she didn't tell you you would never know. The difference is she has been on medication even before a positive MRI. Why do some dr treat and some will only treat if every test points to positive?
Thanks again.
I feel much better now.
Eliza
I will see if I can answer your questions.
I had an MRI of the cervical spine found a lot of inflammation. That is why I had the steroid shots. It brought the inflammation down, when the shot was done in my thumb my hand and thumb swelled twice it size. The orthopaedic wants to do another MRI after a few months to see if anything else pops up.
My husband's friend and boss is a retired eye surgeon. He is going to do the VEP no charge. He has referred me to a MS Neuro DR. I will call Tuesday and set up an appointment for earlier than February.
The Neuro I went to did a spot check. I found out I won't be walking on a balance beam (like he had to tell me). I ended up getting a big bruise on my left arm when I fell against his wall. Mr reflexes in my right leg are week and sometimes not at all. Now for the muscles that is hard to check. I am (use to be) a dancer and a weight lifter. I won a jitter bug contest the day before I had my son. I can tell I have loss muscle but now I am like a normal person. As I have been told.
My endocrinologist did a complet blood work up. 15 viles were taken she checked for everything. Everything came out great except a low vitamin D.
I do get inflammation real easy lately. When I had the heart cath I woke up screaming in pain. I had inflammation so bad that it entrapped a nerve.
Had the nerve test. That hurts. I ended up with inflammation in my thumbs, the left thumb has recovered but the right thumb is still inflamed and probable will need surgery to release the ligament so I can bend the thumb had the test in August.
I like been cold in the summer heat here in Texas. It sure helps with the elect bill.
I don't think I'm to far advanced.
I'm just frustrated with the quality of care around here.
My sister is in a nursing home now. But if it wasn't for her volunteering to test the MS drugs they probably would not be out right now.
Now her MS is very advanced. She is 65 and has to eat with a feeding tube, her eye sight is gone, she has to wear a brace to hold her neck and back up. I talk to her every once in a while. When the nurses let her come to the phone. I understand it is hard to wake her and then have to brace her and then hold the phone for her.
I'm a little upset with hospital. Went there last year. My dogs woke me up I passed out in the kitchen. Hit my L elbow. Checked my sugar everything was good. I have been dizzy ever since then. Ended going to the hospital a few days later. Could not move my L elbow. They did an xray of the elbow went ahead and braced it. Not one dr did anything to find out why i passed out. I have no memory of before the passing out of that day.
On the brain MRI, I'm not sure what it is called but something is pretty advanced for someone my age. There are times I feel like I am 93 and not 47.
Need to go I'm going to try to help my husband paint the bedroom. This is going to be fun. He has a chair set up for me and a roller. He doesn't want me to loss my balance when I look up and fall in the paint. That would be a sight.
I have two friends with MS
one is very advanced and the other if she didn't tell you you would never know. The difference is she has been on medication even before a positive MRI. Why do some dr treat and some will only treat if every test points to positive?
Thanks again.
I feel much better now.
Eliza
Hi, I finally got here. Sorry, for not arriving with that nice introduction, Siddy. I'm in the middle of a family reunion and running tired.
Eliza, you have been on the receiving end of some rather indifferent care. You have had classic attacks and remissions, indicating some kind of demyelinating disease. With a sister with MS, it doesn't take a rocket scientist to consider MS. The repeated negative MRIs are what did you in. Very few doctors will diagnose MS without a lesion on MRI. Were your spine MRI's also negative? I missed seeing what they showed. The spine is harder to image, but with your history (personal and family) they should have been done aong with each one of the brain.
All this time was your neurologist doing careful, thorough exams and comparing them? Do you have any deficits on exam? Loss of sensation, brisk reflexes, balance difficulties, muscle weakness? All these should be checked at least yearly with a history like yours. I would recommend that you seek a referral for neurologic Physical Therapy to have an extensive evaluation of your entire musculature, your gait and to determine the reasons for your difficulty walking. This will accomplish a couple things. It will provide documentation of muscle strength deficits which will be useful for your doctor. It may also, if the PT is good, give you some improvement in your gait. That was where I received most of my benefit.
Your eye pain is concerning. Optic Neuritis can't be seen during the usual ophthalmologic exam about 50% of the time becasue the damage is too far back and doesn't show on the exam of the retina. You need a Visual Evoked Response VEP. This can be ordered by your PCP or the neuro.
The neuro - I cannot believe the callousness of someone who would follow a patient for years, denying that MS existed and then when it shows itself, presume that it is at an untreatable stage and tell you to "get on with your life." That borders on malpractice! If you know of a good MS specialist, it is worth a 100 mile drive for the evaluation. I sounds like from what you have said, either you or he, or both are assuming that the condition is now at the "progressive " stage and cannot be treated. This is not necessarily the case. I am concerned that you are waiting so long for the evaluation and may be missing a window to get ahold of this process.
Did your last MRI say anything about brain atrophy or loss of brain volume?
There are a couple of things that you spoke of that need looking at. Being too cold in hot weather is not a typical problem of MS, but MS has a high association with autoimmune thyroid disease. You should be checked for hypothyroidism and for the antibodies associated with thyroid disease. Your PCP can do this.
MS can certainly affect the hearing. You complain of a condition called hyperacusis (extreme sensitivity to sound). This also raises a flag for one of the mimics of MS, called Lyme Disease. I would recommend that you ask your neuro or PCP to send a "Western Blot" test for Lyme Disease to be run at a lab experienced in testing for tickborne illnesses. The usual test done by 99% of all docs is called an ELISA test and it barely picks up 50% of confirmed Lyme cases. It is close to worthless, unless it is positive.
Uh....The black spot in your vision IS NOT DUE TO STRESS! What a crock! That is why you need the VEP I mentioned earlier.
Finally, your first question. Did the shots of steroids in your back affect the results of the spinal tap? The only reason to have steroid shots in the spine are to treat pain, like in an irritated nerve. Is this why they were done? If so the shots did not enter the spinal canal (where the fluid is). They just acted locally to relieve pain. So they would NOT affect the findings in the spinal tap.
I am so sorry you've been through the limbo of not getting a diagnosis for so long. You sound so tired of it all. Your neuro sounds like a total dimwit! I would really recommend that you get the tests done that I mentioned. It will give the MS Specialist that much more information.
Good luck, I hope this helps. Quix
Eliza, you have been on the receiving end of some rather indifferent care. You have had classic attacks and remissions, indicating some kind of demyelinating disease. With a sister with MS, it doesn't take a rocket scientist to consider MS. The repeated negative MRIs are what did you in. Very few doctors will diagnose MS without a lesion on MRI. Were your spine MRI's also negative? I missed seeing what they showed. The spine is harder to image, but with your history (personal and family) they should have been done aong with each one of the brain.
All this time was your neurologist doing careful, thorough exams and comparing them? Do you have any deficits on exam? Loss of sensation, brisk reflexes, balance difficulties, muscle weakness? All these should be checked at least yearly with a history like yours. I would recommend that you seek a referral for neurologic Physical Therapy to have an extensive evaluation of your entire musculature, your gait and to determine the reasons for your difficulty walking. This will accomplish a couple things. It will provide documentation of muscle strength deficits which will be useful for your doctor. It may also, if the PT is good, give you some improvement in your gait. That was where I received most of my benefit.
Your eye pain is concerning. Optic Neuritis can't be seen during the usual ophthalmologic exam about 50% of the time becasue the damage is too far back and doesn't show on the exam of the retina. You need a Visual Evoked Response VEP. This can be ordered by your PCP or the neuro.
The neuro - I cannot believe the callousness of someone who would follow a patient for years, denying that MS existed and then when it shows itself, presume that it is at an untreatable stage and tell you to "get on with your life." That borders on malpractice! If you know of a good MS specialist, it is worth a 100 mile drive for the evaluation. I sounds like from what you have said, either you or he, or both are assuming that the condition is now at the "progressive " stage and cannot be treated. This is not necessarily the case. I am concerned that you are waiting so long for the evaluation and may be missing a window to get ahold of this process.
Did your last MRI say anything about brain atrophy or loss of brain volume?
There are a couple of things that you spoke of that need looking at. Being too cold in hot weather is not a typical problem of MS, but MS has a high association with autoimmune thyroid disease. You should be checked for hypothyroidism and for the antibodies associated with thyroid disease. Your PCP can do this.
MS can certainly affect the hearing. You complain of a condition called hyperacusis (extreme sensitivity to sound). This also raises a flag for one of the mimics of MS, called Lyme Disease. I would recommend that you ask your neuro or PCP to send a "Western Blot" test for Lyme Disease to be run at a lab experienced in testing for tickborne illnesses. The usual test done by 99% of all docs is called an ELISA test and it barely picks up 50% of confirmed Lyme cases. It is close to worthless, unless it is positive.
Uh....The black spot in your vision IS NOT DUE TO STRESS! What a crock! That is why you need the VEP I mentioned earlier.
Finally, your first question. Did the shots of steroids in your back affect the results of the spinal tap? The only reason to have steroid shots in the spine are to treat pain, like in an irritated nerve. Is this why they were done? If so the shots did not enter the spinal canal (where the fluid is). They just acted locally to relieve pain. So they would NOT affect the findings in the spinal tap.
I am so sorry you've been through the limbo of not getting a diagnosis for so long. You sound so tired of it all. Your neuro sounds like a total dimwit! I would really recommend that you get the tests done that I mentioned. It will give the MS Specialist that much more information.
Good luck, I hope this helps. Quix
Thanks for all the information. Marcie
Here is the time line.
26 3 bladder repairs in 1 yr
27 lost the use of both hands/ drs could not find any reason for this/use regained in 3 days
30 weakness in all limbs/ memory problems, weakness and memory resolved in a month/black spot in r eye(still there) eye doctor says he can not find a reason in my exam. Dr said not to worry probably stress.
33 same symptoms length was longer around 3 months
38 falling, memory, weakness and chest pains. went away in 6months had MRI nothing wrong, stress test nothing wrong,
42 same thing all over again lasted 6 months had MRI still nothing, was put in hospital with possible heart attack/ stress test and halter nothing wrong. Had carpel tunnel surgery. ( now I think that was a wrong diagnoses)
46- chest pains lasting weeks, weakness, and memory problems, Had a stress test nothing wrong but went ahead and had a heart cath. Good news I have newborn baby clear arteries. Had a Doppler of my legs no blood clots. My feet just went numb over night same with face. (the face and feet feelings use to come back this time it has stayed) Not able to walk dogs on 5 mile walk every day. Very tired all the time.
These symptom never went a way except the chest pain are off an on.
Was told this was all do to my diabetes. (NOT)
47- this year symptoms are still around, my endocrinologist sent me to this Neuro dr. He did test said I have carpel tunnel. Went to see my bone dr. He and I talked there is NO way I had carpel tunnel again. Had MRI of neck bones are ok. Told Bone dr about numbness and he sent me in right away in for a brain MRI with and without contrast. This time lesions were found frontal lobe, preventricle Left side, and in other parts can't remember where. Went back to Neuro Dr and he said not to worry. First spinal tap, very painful had 7shots and legs were jumping and had stomach cramps the tap was dry. I screamed for 1 hour during the test. Went back 3 weeks later was put to sleep had another tap everything was fine. I am frustrated. I have had all kinds of blood work, the only low was vitamin D, My A1C was 5.8 which is over and above perfect for a diabetic. My eye's have been painful for years, Headaches yes I've learned to deal with them. My moods are unreal, When it comes to medication's I have to be very careful. I have adverse reactions to most medications. Pain medications speed me up, allergy medications speed me up and don't work, Antibiotics, I have found one type I can take without any problem (can't remember what it is called) Mythelpredeson(I think I spell that wrong) Body felt like I drank acid ended up in hospital screaming my body was on fire. My hearing for the last 5years I had bad hearing but in the last 1year my hearing as my husband puts it is like a dogs. Everything is so loud. I also hear humming in my brain, and I feel humming through out my body. Starting last year in the summer in Texas I was cold. Everywhere I went and at home was freezing. I use to love going to walmart and walk, Now I go and by the time I get 1/4 in there I have to sit. By the time I drive the 20miles home I end up sleeping for hours.
There is alot I know I have not said but having a bad day. Angry at husband, He got on my nerves again. I use to never be that way. I use to smile and pat the person that was trying to get on my nerves and just tell them I love them.
My husband and I noticed that during the summer is when the symptoms are real strong.
I'm going to go to the MS Neuro dr. that I was referred to by my husbands friend/boss. But not going to go until February that will be 6 months from the last MRI. I have promised my husband and kids and my mother who is 87 that if I get worse I will get in sooner or go to the hospital which is over 100 miles away.
Sorry this is so long, but I need to do this.
Went to see our grand babies today.
one is going to be 3 ( my son's)
the other is 2 (my daughter's)
and the baby is 9 months (my son's)
Need to go getting very sleepy and need to fix my husband dinner.
I told him don't you dare baby me I have to do my part in this family.
Thanks again,
Eliza
Here is the time line.
26 3 bladder repairs in 1 yr
27 lost the use of both hands/ drs could not find any reason for this/use regained in 3 days
30 weakness in all limbs/ memory problems, weakness and memory resolved in a month/black spot in r eye(still there) eye doctor says he can not find a reason in my exam. Dr said not to worry probably stress.
33 same symptoms length was longer around 3 months
38 falling, memory, weakness and chest pains. went away in 6months had MRI nothing wrong, stress test nothing wrong,
42 same thing all over again lasted 6 months had MRI still nothing, was put in hospital with possible heart attack/ stress test and halter nothing wrong. Had carpel tunnel surgery. ( now I think that was a wrong diagnoses)
46- chest pains lasting weeks, weakness, and memory problems, Had a stress test nothing wrong but went ahead and had a heart cath. Good news I have newborn baby clear arteries. Had a Doppler of my legs no blood clots. My feet just went numb over night same with face. (the face and feet feelings use to come back this time it has stayed) Not able to walk dogs on 5 mile walk every day. Very tired all the time.
These symptom never went a way except the chest pain are off an on.
Was told this was all do to my diabetes. (NOT)
47- this year symptoms are still around, my endocrinologist sent me to this Neuro dr. He did test said I have carpel tunnel. Went to see my bone dr. He and I talked there is NO way I had carpel tunnel again. Had MRI of neck bones are ok. Told Bone dr about numbness and he sent me in right away in for a brain MRI with and without contrast. This time lesions were found frontal lobe, preventricle Left side, and in other parts can't remember where. Went back to Neuro Dr and he said not to worry. First spinal tap, very painful had 7shots and legs were jumping and had stomach cramps the tap was dry. I screamed for 1 hour during the test. Went back 3 weeks later was put to sleep had another tap everything was fine. I am frustrated. I have had all kinds of blood work, the only low was vitamin D, My A1C was 5.8 which is over and above perfect for a diabetic. My eye's have been painful for years, Headaches yes I've learned to deal with them. My moods are unreal, When it comes to medication's I have to be very careful. I have adverse reactions to most medications. Pain medications speed me up, allergy medications speed me up and don't work, Antibiotics, I have found one type I can take without any problem (can't remember what it is called) Mythelpredeson(I think I spell that wrong) Body felt like I drank acid ended up in hospital screaming my body was on fire. My hearing for the last 5years I had bad hearing but in the last 1year my hearing as my husband puts it is like a dogs. Everything is so loud. I also hear humming in my brain, and I feel humming through out my body. Starting last year in the summer in Texas I was cold. Everywhere I went and at home was freezing. I use to love going to walmart and walk, Now I go and by the time I get 1/4 in there I have to sit. By the time I drive the 20miles home I end up sleeping for hours.
There is alot I know I have not said but having a bad day. Angry at husband, He got on my nerves again. I use to never be that way. I use to smile and pat the person that was trying to get on my nerves and just tell them I love them.
My husband and I noticed that during the summer is when the symptoms are real strong.
I'm going to go to the MS Neuro dr. that I was referred to by my husbands friend/boss. But not going to go until February that will be 6 months from the last MRI. I have promised my husband and kids and my mother who is 87 that if I get worse I will get in sooner or go to the hospital which is over 100 miles away.
Sorry this is so long, but I need to do this.
Went to see our grand babies today.
one is going to be 3 ( my son's)
the other is 2 (my daughter's)
and the baby is 9 months (my son's)
Need to go getting very sleepy and need to fix my husband dinner.
I told him don't you dare baby me I have to do my part in this family.
Thanks again,
Eliza
Hi again,
I have been diagnosed with MS so I can try to help you by getting as much info as I can.
I'm sorry, you still don't have a definite diagnosis. I assumed as you said you have had symptoms of MS for 20 years that you had.
Yes, people with MS complain of facial numbness on one side or all over, and so far you say you have:
difficulty in walking more than 2 blocks
eyes jumping
positive MRI for white spots
arm and leg numbness
memory problems
facial numbness
eyes jumping around
All the above symptoms can be found in Multiple Sclerosis (and other diseases) and I think your country doctor probably hit the nail on the head with his diagnosis of MS especially as you say, your sister was dxed 30 years ago. As you know, if you have a sibling with MS your risk of developing the disease is around 1 in 20 as compared to the general population of 1 in 800.
You say your sister was dxed 30 years ago and still has a negative LP. You also have a negative LP. So that goes to show you that on its own the LP results are not essential for a diagnosis but it does help the doctor to put things in perspective.
The fact that you can't get a dx of MS from your doctor means that he will not diagnose it based on the above symptoms and one postivie MRI. To say "not to worry and go on with your life" is not at all helpful. You could be taking medications that will help as you are only 47.
I am sure you have probably compared symptoms with your sister. Does she take any meds? The very least you could do is to see the MS Neuro recommended to you because if you don't go you will never know for sure. Yes, it is a long way to go but it is par for the course when seeking the right diagnosis to go anywhere and everywhere until you do.
Have all other things been ruled out like Lyme, Lupus and other diseases that are mimics of MS?
It would be helpful to set out a timeline of your symptoms for the MS Neuro and maybe for us in the Forum. Things like when you first noticed the symptoms, how often they came and went, did you get them all at once or some at one time and some at another and maybe a few added symptoms along the way.
Things like:
Bladder problems
tightness around the chest (MS hug)
pains up the side of your face
Optic Neuritis or pains in the eye
headaches
You may not have any of the above, but if you can put together a history it would be very helpful.
Eliza, it is so nice to have you join us in the Forum and we are all here for you and look forward to your response. I know at some time Quix will come in with some more information - she has probably been very busy. There are many other people on this Forum in the same boat as you are without a diagnosis.
Take care
Marcie
I have been diagnosed with MS so I can try to help you by getting as much info as I can.
I'm sorry, you still don't have a definite diagnosis. I assumed as you said you have had symptoms of MS for 20 years that you had.
Yes, people with MS complain of facial numbness on one side or all over, and so far you say you have:
difficulty in walking more than 2 blocks
eyes jumping
positive MRI for white spots
arm and leg numbness
memory problems
facial numbness
eyes jumping around
All the above symptoms can be found in Multiple Sclerosis (and other diseases) and I think your country doctor probably hit the nail on the head with his diagnosis of MS especially as you say, your sister was dxed 30 years ago. As you know, if you have a sibling with MS your risk of developing the disease is around 1 in 20 as compared to the general population of 1 in 800.
You say your sister was dxed 30 years ago and still has a negative LP. You also have a negative LP. So that goes to show you that on its own the LP results are not essential for a diagnosis but it does help the doctor to put things in perspective.
The fact that you can't get a dx of MS from your doctor means that he will not diagnose it based on the above symptoms and one postivie MRI. To say "not to worry and go on with your life" is not at all helpful. You could be taking medications that will help as you are only 47.
I am sure you have probably compared symptoms with your sister. Does she take any meds? The very least you could do is to see the MS Neuro recommended to you because if you don't go you will never know for sure. Yes, it is a long way to go but it is par for the course when seeking the right diagnosis to go anywhere and everywhere until you do.
Have all other things been ruled out like Lyme, Lupus and other diseases that are mimics of MS?
It would be helpful to set out a timeline of your symptoms for the MS Neuro and maybe for us in the Forum. Things like when you first noticed the symptoms, how often they came and went, did you get them all at once or some at one time and some at another and maybe a few added symptoms along the way.
Things like:
Bladder problems
tightness around the chest (MS hug)
pains up the side of your face
Optic Neuritis or pains in the eye
headaches
You may not have any of the above, but if you can put together a history it would be very helpful.
Eliza, it is so nice to have you join us in the Forum and we are all here for you and look forward to your response. I know at some time Quix will come in with some more information - she has probably been very busy. There are many other people on this Forum in the same boat as you are without a diagnosis.
Take care
Marcie
To answer your questions. Not one of the Neuro Dr's would diagnose me by symptoms alone. Now that the MRI is positive I still can't get a diagnoses. Go figure. (my sister who has had MS for over 30 yrs still does not have a positive CSF test.) My husband works for a retired surgeon/dr he has referred me to a MS neuro dr. I have to drive over 100 miles to see him. Obviously I have not been on any medications. Just learning to deal with it and going and going on with life. I use to lift weights, and dance but now I can hardly walk 1-2 blocks with my dogs. I do force myself to get up and move. It is so upsetting to have this and you know you have something wrong but NO ONE will listen. I was told for years until this MRI was done that all my symptoms were caused by my diabetes. I know better. I did have a country DR in a very small town tell me that I was a classic MS patient and not to give up on DR's, that was about in 1998. His father has MS and it took years to get his diagnoses.
Has anyone out there ever have their face go numb and their eye lids?
Also. My eyes have started to jump around is this normal?
It is so upsetting, I use to dance (ballet) have great balance now I fall, trip, and stumble when I walk. My husband and I have learned to laugh and make jokes. My memory is awful. I always took pride in the fact that if you told me something or I was in a meeting I did not have to take notes, I could repeat word for word, Now I'm lucky if I can remember any of what was said and who said it. Well enough gripping need to go.
Thanks for all your help.
God Bless
Eliza
Oh yeah I am new. Found this site on accident.
Has anyone out there ever have their face go numb and their eye lids?
Also. My eyes have started to jump around is this normal?
It is so upsetting, I use to dance (ballet) have great balance now I fall, trip, and stumble when I walk. My husband and I have learned to laugh and make jokes. My memory is awful. I always took pride in the fact that if you told me something or I was in a meeting I did not have to take notes, I could repeat word for word, Now I'm lucky if I can remember any of what was said and who said it. Well enough gripping need to go.
Thanks for all your help.
God Bless
Eliza
Oh yeah I am new. Found this site on accident.
Welcome to the board if this is your first time posting. You are in the right place for help with questions and support. I know that Quix when she is ready will jump in here, but in the meantime can you give us some more information?
It would be helpful to know on what basis was your MS diagnosed 20 years ago when you were 27? Did you have MRI's of the brain, spine, etc.at that time?
A "negative" spinal tap does not rule out MS or other diseases. Some 5%-10% of people with MS never show CSF abnormalities and analysis of the CSF by itself cannot confirm or rule out a diagnosis of MS. It must be part of your total clinical picture that takes into account the results of your MRI and other tests.
By what you say you probably have/had Relapsing Remitting MS where you say you have had symptoms then they go away and come back and get worse and go away and now after 20 years you feel they are here to stay. This is not necessarily so. Your MS has likely become Secondary Progressive MS which is the natural evolution of Relapsing-Remitting MS and develops in about half of patients during the first 10 years and nearly all of them within 25 years. You may still experience remissions even if you have reached this stage as it follows a progressive course of nerve and muscle deterioration with occasional acute flare-ups, remissions, and plateaus.
Do you, or have you, taken any medications such as Avonex, Rebif, Copaxone to help with your MS?
I did a search and cannot find any evidence of steroids affecting the outcome of your LP. I would imagine that your doctor knew about the steroids when he did the lumbar puncture and took this into account. However, I will leave Quix with the last word because I really can't say for sure.
Meanwhile, you might also read the posts from Quix entitled "MRI's lesions and symptoms".
Never fear, Quix is here!
Marcie
It would be helpful to know on what basis was your MS diagnosed 20 years ago when you were 27? Did you have MRI's of the brain, spine, etc.at that time?
A "negative" spinal tap does not rule out MS or other diseases. Some 5%-10% of people with MS never show CSF abnormalities and analysis of the CSF by itself cannot confirm or rule out a diagnosis of MS. It must be part of your total clinical picture that takes into account the results of your MRI and other tests.
By what you say you probably have/had Relapsing Remitting MS where you say you have had symptoms then they go away and come back and get worse and go away and now after 20 years you feel they are here to stay. This is not necessarily so. Your MS has likely become Secondary Progressive MS which is the natural evolution of Relapsing-Remitting MS and develops in about half of patients during the first 10 years and nearly all of them within 25 years. You may still experience remissions even if you have reached this stage as it follows a progressive course of nerve and muscle deterioration with occasional acute flare-ups, remissions, and plateaus.
Do you, or have you, taken any medications such as Avonex, Rebif, Copaxone to help with your MS?
I did a search and cannot find any evidence of steroids affecting the outcome of your LP. I would imagine that your doctor knew about the steroids when he did the lumbar puncture and took this into account. However, I will leave Quix with the last word because I really can't say for sure.
Meanwhile, you might also read the posts from Quix entitled "MRI's lesions and symptoms".
Never fear, Quix is here!
Marcie
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