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Should I start injection therapy?
To: Multiple Sclerosis Evaluation
Hi, I am currently for the second time in my life going through an evaluation for MS. I was in my early twenties when I had a foot drag, loss of right eye sight, protrusion on my brain. I was hospital for weeks. I did not get a diagnosis. I was also checked for a stroke. Physician told me that more than likely I had MS but could not give diagnosis. All systems went away within several months, except my right eye has nerve damage. That was approximately 30 years ago. To my knowledge I did not have a recurring episode. I had some numbness and tingling in my limbs but thought it was because of over exercising. No way did I think that these things were related to MS events! Now, I am being asked by a Nuerologist to start an injection therapy: take a spinal tap; I am researching which therapy; wanting a second opinion; and just trying to get a clear understanding in general. In the past, I have had several spinal taps and I want to wait on that. I remember a spinal tap being a painful experience and I am sure it has not changed. I thought I was in excellent health until I received the results of my MRI! What are your thoughts on my story. Please respond and let me know.
Hi, I am currently for the second time in my life going through an evaluation for MS. I was in my early twenties when I had a foot drag, loss of right eye sight, protrusion on my brain. I was hospital for weeks. I did not get a diagnosis. I was also checked for a stroke. Physician told me that more than likely I had MS but could not give diagnosis. All systems went away within several months, except my right eye has nerve damage. That was approximately 30 years ago. To my knowledge I did not have a recurring episode. I had some numbness and tingling in my limbs but thought it was because of over exercising. No way did I think that these things were related to MS events! Now, I am being asked by a Nuerologist to start an injection therapy: take a spinal tap; I am researching which therapy; wanting a second opinion; and just trying to get a clear understanding in general. In the past, I have had several spinal taps and I want to wait on that. I remember a spinal tap being a painful experience and I am sure it has not changed. I thought I was in excellent health until I received the results of my MRI! What are your thoughts on my story. Please respond and let me know.
Welcome back and thanks for the update. Glad things are going well. It does sound like you are taking control and moving in a positive direction. Good for you!!
I wish you hadn't had to deal with the MS diagnosis but it is nice to see how on top of things the members of this forum are. Quix seems to have been right on target once again. (There's some validation for you Doc, even if it's not on your own MRI.)
I find it interesting about the osteopenia. Are you taking a vitamin D supplement or had your blood levels checked? MS patients (and half the other people on earth) seem to be testing low on vitamin D. It's necessary for the absorption of calcium and could be contributing indirectly to the bone loss.
I wasn't sure from your post. Have they ruled out the multiple myloma? I certainly hope so. It seems I remember that calcium levels are also way off (high) with that but I could be way off myself.
Please hang some more so we can all support one another.
Mary
I wish you hadn't had to deal with the MS diagnosis but it is nice to see how on top of things the members of this forum are. Quix seems to have been right on target once again. (There's some validation for you Doc, even if it's not on your own MRI.)
I find it interesting about the osteopenia. Are you taking a vitamin D supplement or had your blood levels checked? MS patients (and half the other people on earth) seem to be testing low on vitamin D. It's necessary for the absorption of calcium and could be contributing indirectly to the bone loss.
I wasn't sure from your post. Have they ruled out the multiple myloma? I certainly hope so. It seems I remember that calcium levels are also way off (high) with that but I could be way off myself.
Please hang some more so we can all support one another.
Mary
Hello All!
It has been some time since my last posting. My days have been busy with Doc appts, getting used to shot therapy, therapy for this overwhelming chapter of my life, and finding balance. All is well! I have been diagnosed with MS minus the LP! I started Copaxone March 2010. I still experience some days (fewer) of fatigue and my headaches have decreased tremendously! My most recent events are a referral to a cancer center hematoligist because of elevated protein levels in my blood suggesting multiple myeloma, and a bone densisty test--diagnosis of osteopenia.
It is strange because you cannot look at me and tell that anything is wrong. I workout (weights/cardio), eat right (for the most part), and keep my weight low (I decided to increase my weight once I found out about MS shot therapy to have enough fat to weather the storm.) I am learning to process my day moment by moment. I continue to plan and set goals. One of my biggest successes is learning to not beat myself up when I come up short! :-)
Love, Prayer, and God Bless!
It has been some time since my last posting. My days have been busy with Doc appts, getting used to shot therapy, therapy for this overwhelming chapter of my life, and finding balance. All is well! I have been diagnosed with MS minus the LP! I started Copaxone March 2010. I still experience some days (fewer) of fatigue and my headaches have decreased tremendously! My most recent events are a referral to a cancer center hematoligist because of elevated protein levels in my blood suggesting multiple myeloma, and a bone densisty test--diagnosis of osteopenia.
It is strange because you cannot look at me and tell that anything is wrong. I workout (weights/cardio), eat right (for the most part), and keep my weight low (I decided to increase my weight once I found out about MS shot therapy to have enough fat to weather the storm.) I am learning to process my day moment by moment. I continue to plan and set goals. One of my biggest successes is learning to not beat myself up when I come up short! :-)
Love, Prayer, and God Bless!
Hi, Maartu and welcome to our forum. You appear to be one of the people we talk about when we say that a second relapse may take years to show up. However, it sounds like you had some of the subtle things, like the numbness and tingling, and some of the cognitive problems with memory and recall. If the numbness and tingling lasted more than 24 hours, it was consistent with an MS relapse and not just exercising (which shouldn't have that effect either.)
Your 50's is not old enough to call cognitive problems, like memory difficulties and recall problems. I think you were just having unremarkable relapses.
About the spinal tap (LP). Jen and Heather are correct. It is not a basic requirement for the diagnosis of MS if there is a history of two or more attacks, there is evidence on the physical exam of abnormalities that point to two or more areas of abnormality and the other MS mimics have been throughly ruled out.
Clearly you have had the two attacks at minimum. The one in your twenties and the current one fulfill that requirement.
On your physical exam you definitely have the abnormality of optic neuritis. Are there other abnormalities on your neuro exam like hyperactive reflexes or difficulties with balance or areas with abnormal sensation? With the history of foot drop back then, I wouldn't be surprised if you had brisk reflexes on that side even now.
If the mimics have been ruled out - with blood tests and there are "any" lesions on your MRI, then you have enough info to cinch a diagnosis of MS. Have you had an MRI of your spinal cord? If not, you might request that they do one before they do an LP (spinal tap). If there are lesions there then an LP likely would not be necessary.
Some neurologists want the LP info on all their patients. If this is the case, talk to him about how certain he is without that data. Also, some neuros believe that a person has to have a positive LP in order to be diagnosed. We know that is not true, but some docs beleive it anyway.
If he does insist on a tap, then ask that it be done by a radiologist under fluoroscopic (X-ray) guidance. This way it is usually less painful and simple, especially if you are overweight. You also need to know that just because earlier taps were painful, this one may well not be painful. My last three were a breeze.
I also agree that it is best to get the insurance coverage before you get the diagnosis. Unless the Health Care overhaul gets passed, MS can be a strong barrier to getting coverage and sometimes to getting a job. Currently, tho, if a new job has health benefits they can't deny you coverage because of a preexisting condition. And if you have had coverage ongoing with no greater than a 62 day break they can't penalize you for a pre-existing condition. So, do not allow your coverage to lapse and take advantage of COBRA if at all possible. See if your divorce attorney can force your spouse to keep you covered or pay for coverage. I paid for my XH's COBRA for 4 years after our divorce.
Stay with us and we'll help you through this. Knowledge is truly power and knowing you are not alone gives you strength.
Quix
Your 50's is not old enough to call cognitive problems, like memory difficulties and recall problems. I think you were just having unremarkable relapses.
About the spinal tap (LP). Jen and Heather are correct. It is not a basic requirement for the diagnosis of MS if there is a history of two or more attacks, there is evidence on the physical exam of abnormalities that point to two or more areas of abnormality and the other MS mimics have been throughly ruled out.
Clearly you have had the two attacks at minimum. The one in your twenties and the current one fulfill that requirement.
On your physical exam you definitely have the abnormality of optic neuritis. Are there other abnormalities on your neuro exam like hyperactive reflexes or difficulties with balance or areas with abnormal sensation? With the history of foot drop back then, I wouldn't be surprised if you had brisk reflexes on that side even now.
If the mimics have been ruled out - with blood tests and there are "any" lesions on your MRI, then you have enough info to cinch a diagnosis of MS. Have you had an MRI of your spinal cord? If not, you might request that they do one before they do an LP (spinal tap). If there are lesions there then an LP likely would not be necessary.
Some neurologists want the LP info on all their patients. If this is the case, talk to him about how certain he is without that data. Also, some neuros believe that a person has to have a positive LP in order to be diagnosed. We know that is not true, but some docs beleive it anyway.
If he does insist on a tap, then ask that it be done by a radiologist under fluoroscopic (X-ray) guidance. This way it is usually less painful and simple, especially if you are overweight. You also need to know that just because earlier taps were painful, this one may well not be painful. My last three were a breeze.
I also agree that it is best to get the insurance coverage before you get the diagnosis. Unless the Health Care overhaul gets passed, MS can be a strong barrier to getting coverage and sometimes to getting a job. Currently, tho, if a new job has health benefits they can't deny you coverage because of a preexisting condition. And if you have had coverage ongoing with no greater than a 62 day break they can't penalize you for a pre-existing condition. So, do not allow your coverage to lapse and take advantage of COBRA if at all possible. See if your divorce attorney can force your spouse to keep you covered or pay for coverage. I paid for my XH's COBRA for 4 years after our divorce.
Stay with us and we'll help you through this. Knowledge is truly power and knowing you are not alone gives you strength.
Quix
LP is lumbar puncture - what they do is take the spinal fluid and run it through an electrophoresis test to separate out the antibodies from the fluid. Then they test your blood for the same antibodies. If there's more antibodies in the fluid than the blood, it's considered a sign pointing to MS.
I would definitely get the medical insurance coverage first before diagnosis - with our current health care system, there's no way you can get coverage with an MS diagnosis.
I would definitely get the medical insurance coverage first before diagnosis - with our current health care system, there's no way you can get coverage with an MS diagnosis.
Thank you all for your support!
What's a LP?
I see an Opthamologist regularly, and I have a definite diagnosis of Optic Neuritis, and Glaucoma. Daily, I use an eye drop to keep my eyes within acceptable pressure levels.
I will not start injection therapy until I get a MS diagnosis. My Neurologist has not asked for the information from 30 years ago. I am trying to get a second opinion.
I know that I can take the pain of a spinal but I am not convinced having one is necessary. I had several of them in 1980 during 3+ weeks of hospitalization. So, I wonder if it is necessary to have a spinal tap, and if there is an updated way of accomplishing the same results you get from the invasive spinal tap procedure.
I am afraid of the negative stigma attached to a MS diagnosis, as it relates to medical insurance! I am a stay-at-home Army wife who is now going through a divorce, and getting back in the work-force. Will I be able to get medical insurance coverage with a MS diagnosis or will it be deemed a preexisting condition?
l am 50 yrs old and was 20 yrs old when I had my first symptoms. I assumed that since all except my sight in my right eye went back to normal; I did not get diagnosed with MS; and I had no other symptoms over the years (I related to my earlier symptons), I was fine. I've had some loss of memory and ability to retain info but thought it was because of aging. I thought I no longer needed to be checked. After joining this site and reviewing the information in it, I feel like I've had an "ah ha" moment!
I will keep you all updated. Thanks again for your support. God bless.
What's a LP?
I see an Opthamologist regularly, and I have a definite diagnosis of Optic Neuritis, and Glaucoma. Daily, I use an eye drop to keep my eyes within acceptable pressure levels.
I will not start injection therapy until I get a MS diagnosis. My Neurologist has not asked for the information from 30 years ago. I am trying to get a second opinion.
I know that I can take the pain of a spinal but I am not convinced having one is necessary. I had several of them in 1980 during 3+ weeks of hospitalization. So, I wonder if it is necessary to have a spinal tap, and if there is an updated way of accomplishing the same results you get from the invasive spinal tap procedure.
I am afraid of the negative stigma attached to a MS diagnosis, as it relates to medical insurance! I am a stay-at-home Army wife who is now going through a divorce, and getting back in the work-force. Will I be able to get medical insurance coverage with a MS diagnosis or will it be deemed a preexisting condition?
l am 50 yrs old and was 20 yrs old when I had my first symptoms. I assumed that since all except my sight in my right eye went back to normal; I did not get diagnosed with MS; and I had no other symptoms over the years (I related to my earlier symptons), I was fine. I've had some loss of memory and ability to retain info but thought it was because of aging. I thought I no longer needed to be checked. After joining this site and reviewing the information in it, I feel like I've had an "ah ha" moment!
I will keep you all updated. Thanks again for your support. God bless.
I'm with "jen." A spinal tap in the United States should not be relied upon to diagnose MS. If you have an abnormal physical exam, have lesions on your brain and probably your spine, and more than one "attack," all other mimics ruled out....then you should probably have enough evidence to get a diagnosis of MS. Wow, that was a long sentence...sorry.
If your doctor's say that everything points to MS with what you have shown, then ask why they feel that a spinal tap is necessary. It's an invasive test and I'd rather go to a picnic than have one. Even though I had a diagnosis of MS years before I submitted to a spinal tap, I only showed one "O' band at that time. Usually two or more are seen.
The damage to your right eye, is suggestive of Optic Neuritis, which is commonly seen in MS. You certainly have all the symptoms of probable MS. If you MRI has changed since your many years of "quiet" symptoms, then I should think it would be easy for your doctor to give you a diagnosis. I would really put the spinal tap off, unless your doctor says that he is insistent that it be done.
There are still people with positive MS, that have a negative spinal tap, although it would be rare, 30 years after your first attack. I really believe if you are having an increase in symptoms now and you have changes on your MRI that shows active lesions or more lesions, then your spinal tap would most probably be positive.
It's NEVER too late to start on one of the DMD's in my opinion.
Please keep us updated, what you decide to do. I'm sorry to hear that after all these years of inactive disease, that you now are facing more problems.
Best Wishes,
Heather
If your doctor's say that everything points to MS with what you have shown, then ask why they feel that a spinal tap is necessary. It's an invasive test and I'd rather go to a picnic than have one. Even though I had a diagnosis of MS years before I submitted to a spinal tap, I only showed one "O' band at that time. Usually two or more are seen.
The damage to your right eye, is suggestive of Optic Neuritis, which is commonly seen in MS. You certainly have all the symptoms of probable MS. If you MRI has changed since your many years of "quiet" symptoms, then I should think it would be easy for your doctor to give you a diagnosis. I would really put the spinal tap off, unless your doctor says that he is insistent that it be done.
There are still people with positive MS, that have a negative spinal tap, although it would be rare, 30 years after your first attack. I really believe if you are having an increase in symptoms now and you have changes on your MRI that shows active lesions or more lesions, then your spinal tap would most probably be positive.
It's NEVER too late to start on one of the DMD's in my opinion.
Please keep us updated, what you decide to do. I'm sorry to hear that after all these years of inactive disease, that you now are facing more problems.
Best Wishes,
Heather
Are they wanting a spinal tap before they diagnose you? Since you've already had several, I'm not sure that there's a point in having another one. Spinal taps are no longer de rigeur for being diagnosed for MS.
Your symptoms do sound like you have some neurological problems. At this point I would find out if an LP is necessary for diagnosis, and if not, then get the diagnosis and begin a DMD. It sounds like you're in your fifties - at this point in your life, MS has already done some damage, but you can slow down any further damage.
Your symptoms do sound like you have some neurological problems. At this point I would find out if an LP is necessary for diagnosis, and if not, then get the diagnosis and begin a DMD. It sounds like you're in your fifties - at this point in your life, MS has already done some damage, but you can slow down any further damage.
From what I know, a spinal tap and MRI both should be done to rule in/out MS. I would not start an MS injection therapy until everything else had been ruled out. But then again, I'm no expert.
My spinal tap was no picnic but I survived and you will too :)
My spinal tap was no picnic but I survived and you will too :)
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