Aa
something else?
Hi everyone, I am still in limbo with no Dx except "unspecified demylineating disease". I have been slowly but surely trying to get back to my old jogging routine on the threadmill. I had to stop altogether last month due to leg issues. Now even if I jog 4mph my legs get fatigued so easily. Last night after doing a 2 mile brisk walk, I had tingling on my back immediately after stopping. I thought it would go away but I still have constant tingling as I sit here, to the point that the feeling is very annoying. The tingling is from my upper back down to my calf.
Has anyone else had this after a walk? Should I get spinal MRIs to rule out disc pathology or could this be yet another symptom of this so called "unspecified" demylineating disease?.
Has anyone else had this after a walk? Should I get spinal MRIs to rule out disc pathology or could this be yet another symptom of this so called "unspecified" demylineating disease?.
I say like the other´s, you have Dawson´s fingers on your MRI! Can it be any clearer? I am not diagnosed, but have a lot of periventrucular lesions, I think it is likely that I have MS, but yours are SO obvious! I posted few of my MRI´s on my "wall" and my lesions are not so typical like your´s. I hope you get diagnoses soon so you can start some treatment. Good luck!
My best wishes,
Dagun
My best wishes,
Dagun
Funny thing is, I just looked at my insurance claim from my neuro-opthalmologist, and as a dx code he put down MS not "unspecified demylineating disease". I know this does not mean anything but my insurance carrier has me down as having MS because of the claims that have came in showing MS as principal dx. As a matter of fact, I received some literature from my insurance regarding MS and the treatment options, nurse hotline etc.
I agree with you guys, these lesions do not look ischemic to me.
I agree with you guys, these lesions do not look ischemic to me.
That's what I thought too, Poppy, but didn't want to come out and say it. Can't believe you don't have dx. Hang in there.
That's what I thought too, Poppy, but didn't want to come out and say it. Can't believe you don't have dx. Hang in there.
I just had a look at the MRI pictures on your profile. Am I seeing 'Dawson's fingers' on one of them, or am I just dreaming???
Poppy
Poppy
Oh, and another thing if no one above mentioned it. Your severe fatigue is likely the result of pushing too hard on legs that have demyelination going on. Read the Health Page on "Fatigue" and it will describe why the muscle strength can extinguish with repeated use.
In my description of how I got my diagnosis, I think, I describe an incident where I was taking walks every morning and it was warmer than usual. I walked farther than usual. My legs actually gave out before I got home and dropped me in the street (no sidewalks).
Quix
In my description of how I got my diagnosis, I think, I describe an incident where I was taking walks every morning and it was warmer than usual. I walked farther than usual. My legs actually gave out before I got home and dropped me in the street (no sidewalks).
Quix
Dear, with a brain full of lesions you likely have the Dx cinched and tied up in a bow. *** Ess said the EEG, bubble test (for throwing clots across an opening in the heart) EMG should be negative. The LP and the evoked potentials "may" be negative in full-blown MS.
This neuro's slimy, little gray thing inside his cranium got away a long time ago and escaped into the hills. He has saddled you with a non-diagnosis to your damage and his idiocy.
I have some suggestions for when you see the new neuro. When that comes up we should talk again.
You are not the only one here that has been thrown away with this kind of nonsense. There is NO option of "Unspecified Demyelinating Disease"!!!
Sheeesh!!!
Quix
This neuro's slimy, little gray thing inside his cranium got away a long time ago and escaped into the hills. He has saddled you with a non-diagnosis to your damage and his idiocy.
I have some suggestions for when you see the new neuro. When that comes up we should talk again.
You are not the only one here that has been thrown away with this kind of nonsense. There is NO option of "Unspecified Demyelinating Disease"!!!
Sheeesh!!!
Quix
I do have a hx of HTN but it is well controlled. I do check my BP and I have to say I get beautiful readings. MRA came back normal. All blood tests came back normal with no deficiencies whatsoever. My neuro-opthalmologist was annoyed at the fact that the radiologist called my lesions ischemic when he stated that he should have taken into consideration my symptoms, they fact that they come and go, the fact that one of the lesions is in the corpus callosum. The MRA and bubble test were done to rule out vascular issues and none was found.
I have two MRIs scheduled for this week, a neck and a thoracic one. Something is giving me this constant tingling, and one thing I know is that this crap is not in my head. When you sit there and your toes make these slight moves on their own, it is not in my head, this ringing in my ear is not in my head, my leg weakness after exercising is not in my head. I am waiting for my medical records so that I can go to my new neuro with everything. One thing I know is that I am NOT doing the LP again, nor the EMGs.
I have two MRIs scheduled for this week, a neck and a thoracic one. Something is giving me this constant tingling, and one thing I know is that this crap is not in my head. When you sit there and your toes make these slight moves on their own, it is not in my head, this ringing in my ear is not in my head, my leg weakness after exercising is not in my head. I am waiting for my medical records so that I can go to my new neuro with everything. One thing I know is that I am NOT doing the LP again, nor the EMGs.
I agree emphatically with Quix that you need a new neuro like yesterday.
Many of the tests he ordered SHOULD come out normal if the problem is MS. For instance, EMG, EEG, MRA. Not sure what a bubble test is, since it's not usually included when MS is suspected. I have no problem with his ordering the tests, since they can show other issues, but to say you don't have MS because they're normal is nuts.
A sizeable number of diagnosed MSers, including me, have normal LPs, so this is not a definitive test, just an indicator. An ophthalmologist would find nothing wrong with your optic nerves if MS hasn't affected them. Similarly, the places that evoked potentials examine might also not have been affected, or for all of these, affected yet. The central nervous system is a big area, with many possibilities for lesions and symptoms. Not everyone gets everything, thank heavens.
For years I had all my abnormal brain MRIs attributed to ischemia, but I'm a lot older than you. I've never had high blood pressure, the major cause of ischemic lesions, and if you haven't either, then at your age the likelihood of these being ischemic changes is small. The radiologist doesn't know your health history or anything else about you, but the neuro should.
I'm not at all saying you have MS because I'm not a doctor and I really don't know. But your neuro doesn't know either, and he should. You need a neuro who specializes in MS to get to the root of things. I would ditch this incompetent so-and-so immediately.
ess
Many of the tests he ordered SHOULD come out normal if the problem is MS. For instance, EMG, EEG, MRA. Not sure what a bubble test is, since it's not usually included when MS is suspected. I have no problem with his ordering the tests, since they can show other issues, but to say you don't have MS because they're normal is nuts.
A sizeable number of diagnosed MSers, including me, have normal LPs, so this is not a definitive test, just an indicator. An ophthalmologist would find nothing wrong with your optic nerves if MS hasn't affected them. Similarly, the places that evoked potentials examine might also not have been affected, or for all of these, affected yet. The central nervous system is a big area, with many possibilities for lesions and symptoms. Not everyone gets everything, thank heavens.
For years I had all my abnormal brain MRIs attributed to ischemia, but I'm a lot older than you. I've never had high blood pressure, the major cause of ischemic lesions, and if you haven't either, then at your age the likelihood of these being ischemic changes is small. The radiologist doesn't know your health history or anything else about you, but the neuro should.
I'm not at all saying you have MS because I'm not a doctor and I really don't know. But your neuro doesn't know either, and he should. You need a neuro who specializes in MS to get to the root of things. I would ditch this incompetent so-and-so immediately.
ess
Did you take your nap? LOL
Hi, well he is going by the fact that the only negative thing is the MRI that has quite a few lesions (I posted a couple of images on my profile page). LP, EMG, evoked potentials, EEG, and neck MRI have all came back negative. He wants to repeat all these tests in a year (as if) Second MRI showed no new or enhancing lesions but as we all know, this means nothing. According to my neurologist, the only abnormal thing is the MRI and the last MRI was interpreted as ischemic changes but the radiologist did state that the lesion load was significantly high for a patient my age (45). My neuro-ophthalmologist found no demylineating signs on my exam but he saw my MRI images and stated that at my age, the lesions should not be called ischemic, even with my HTN because it is under control and that the lesions definetly looked demylineating in nature. He said he was going to send my neuro a note.
Meanwhile, I am stuck with this tingling which is not debilitating but soooo frigging annoying. I had my boss who is a neurosurgeon order me a new mri of the neck and thoracic to rule out compression as the cause of my tingling.
Oh, I requested copies of my medical records to be sent to me because I want to scrutinize everything and also be armed with my records if I decide to change neuros.
Take a look at my MRI images, should my brain look like that at my age?, oh MRA and bubble tests have came back negative as well.
Hi, well he is going by the fact that the only negative thing is the MRI that has quite a few lesions (I posted a couple of images on my profile page). LP, EMG, evoked potentials, EEG, and neck MRI have all came back negative. He wants to repeat all these tests in a year (as if) Second MRI showed no new or enhancing lesions but as we all know, this means nothing. According to my neurologist, the only abnormal thing is the MRI and the last MRI was interpreted as ischemic changes but the radiologist did state that the lesion load was significantly high for a patient my age (45). My neuro-ophthalmologist found no demylineating signs on my exam but he saw my MRI images and stated that at my age, the lesions should not be called ischemic, even with my HTN because it is under control and that the lesions definetly looked demylineating in nature. He said he was going to send my neuro a note.
Meanwhile, I am stuck with this tingling which is not debilitating but soooo frigging annoying. I had my boss who is a neurosurgeon order me a new mri of the neck and thoracic to rule out compression as the cause of my tingling.
Oh, I requested copies of my medical records to be sent to me because I want to scrutinize everything and also be armed with my records if I decide to change neuros.
Take a look at my MRI images, should my brain look like that at my age?, oh MRA and bubble tests have came back negative as well.
Hi, I'm sorry you've been in limbo for so long, especially with the nonexistent diagnosis of "nonspecific demyelinating disease! If there is enough evidence that you have had a demyelinating event and the mimics have been ruled out then the thoughts should be turned toward a CIS or MS itself. Do you know what is holding up your diagnosis?
This "unspecified" nonsense is the refuge of a mediocre neuro's mind, in my not so humble opinion. Yes, the diagnosis does appear in the DSMIV, but only by default. Riding on the Fence lets the doctor relax (after all, he has an answe0r, and he doesn't have to stick out his neck! I hope his saddle sores keep him up at night....
There really is pressure to begin treatment ASAP.
In the McDonald Criteria there is NO mention of non-specific demyelinating disease. NONE! Once you get so far as being sure that it is a demyelinating process you are at least at a CIS. And you begin a Disease Modifying Drug. Even a negative MRI doesn't change that. Ten percent of people with CIS and a negative MRI will convert to MS. One lesion raises that percentage a lot and a second lesion takes it to close to 80% if I remember correctly. I repeat: In the decision process of the McDonald Criteria, there is NO option of settling on the dead end of declaring the process "nonspecific" and then watching and waiting for some mystical sign that proves the person has MS.
IF THE NEURO THINKS YOU HAVE A DEMYELINATING DISEASE, CAN'T MAKE THE DX OF MS AND HASN'T DONE A SPINAL MRI? mumble...mumble...hairball...idiot...should be shot...idiot...I need a nap...
You need a new neuro. If the brain MRI is negative and the suspicion is high for a demyelinating process then the published recommendations are TO DO AN MRI OF THE SPINE!!!!! How come a retired pediatrician knows this and a practicing neuro doesn't? Most MS neuros do both as part of the initial work up.
What does this dufus think is holding up the diagnosis? ....real mental giant...
Quix....I need a nap
This "unspecified" nonsense is the refuge of a mediocre neuro's mind, in my not so humble opinion. Yes, the diagnosis does appear in the DSMIV, but only by default. Riding on the Fence lets the doctor relax (after all, he has an answe0r, and he doesn't have to stick out his neck! I hope his saddle sores keep him up at night....
There really is pressure to begin treatment ASAP.
In the McDonald Criteria there is NO mention of non-specific demyelinating disease. NONE! Once you get so far as being sure that it is a demyelinating process you are at least at a CIS. And you begin a Disease Modifying Drug. Even a negative MRI doesn't change that. Ten percent of people with CIS and a negative MRI will convert to MS. One lesion raises that percentage a lot and a second lesion takes it to close to 80% if I remember correctly. I repeat: In the decision process of the McDonald Criteria, there is NO option of settling on the dead end of declaring the process "nonspecific" and then watching and waiting for some mystical sign that proves the person has MS.
IF THE NEURO THINKS YOU HAVE A DEMYELINATING DISEASE, CAN'T MAKE THE DX OF MS AND HASN'T DONE A SPINAL MRI? mumble...mumble...hairball...idiot...should be shot...idiot...I need a nap...
You need a new neuro. If the brain MRI is negative and the suspicion is high for a demyelinating process then the published recommendations are TO DO AN MRI OF THE SPINE!!!!! How come a retired pediatrician knows this and a practicing neuro doesn't? Most MS neuros do both as part of the initial work up.
What does this dufus think is holding up the diagnosis? ....real mental giant...
Quix....I need a nap
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