Aa
Still in Limbo (I think..) after almost 3 years
Hello people,
some 2,5 years ago I posted a question here after a couple of small, non-specific WM lesions were found on my brain MRI. At that time I had some vague, non-specific symptoms; some very mild sensory complaints (tingling, warmer spots) and back- and neck pain. All other tests came back negative in that period (spinal tap, VEP, spinal MRI, EMG). I had several follow-up MRI's in the last 2,5 years; result: status quo of brain lesions, spinal MRI was clear 3 months ago. I also saw 3 different neurologists here in Belgium, 2 of them MS specialists, but all of them said (quite firmly) that this doesn't look like MS.
In the meantime, my legs have gradually become weaker, stiffness too, walking has become harder, but no limp, foot drop. I can still walk for several kilometers. I also notice atrophy in my thighs. Some mild sensory issues, and a lot of bodywide fasciculations or myokymia - hard to tell the difference between the two apparently. Those twitches I have had on and off for the past 10 years or so. No real other symptoms. Hard to admit maybe, but the past 2 years this MS thing has become an obsession; I read a lot of literature and I'm more & more sure about PPMS.. it simply doesn't let me loose...
I read that the majority of people with PPMS also have spinal lesions, and that leg weakness/spasticity very often goes hand in hand with these lesions. Currently in my case, no (detectable..) spinal lesions.
Does my situation seem similar to yours, if you were eventually dx'd with PPMS ? e.g. no spinal lesions, but still marked leg weakness and stiffness, no other real symptoms, did you have muscular atrophy right from the start ? I also wonder if I have other options, besides a wait-and-see attitude - maybe ask for a repeat spinal tap, etc. ?
Thx in advance for your answers !
some 2,5 years ago I posted a question here after a couple of small, non-specific WM lesions were found on my brain MRI. At that time I had some vague, non-specific symptoms; some very mild sensory complaints (tingling, warmer spots) and back- and neck pain. All other tests came back negative in that period (spinal tap, VEP, spinal MRI, EMG). I had several follow-up MRI's in the last 2,5 years; result: status quo of brain lesions, spinal MRI was clear 3 months ago. I also saw 3 different neurologists here in Belgium, 2 of them MS specialists, but all of them said (quite firmly) that this doesn't look like MS.
In the meantime, my legs have gradually become weaker, stiffness too, walking has become harder, but no limp, foot drop. I can still walk for several kilometers. I also notice atrophy in my thighs. Some mild sensory issues, and a lot of bodywide fasciculations or myokymia - hard to tell the difference between the two apparently. Those twitches I have had on and off for the past 10 years or so. No real other symptoms. Hard to admit maybe, but the past 2 years this MS thing has become an obsession; I read a lot of literature and I'm more & more sure about PPMS.. it simply doesn't let me loose...
I read that the majority of people with PPMS also have spinal lesions, and that leg weakness/spasticity very often goes hand in hand with these lesions. Currently in my case, no (detectable..) spinal lesions.
Does my situation seem similar to yours, if you were eventually dx'd with PPMS ? e.g. no spinal lesions, but still marked leg weakness and stiffness, no other real symptoms, did you have muscular atrophy right from the start ? I also wonder if I have other options, besides a wait-and-see attitude - maybe ask for a repeat spinal tap, etc. ?
Thx in advance for your answers !
Spastic paraparesis, fasciculations and myokymia are not terms many people use when describing symptoms. They are terms often used by people who have spent extraordinary periods of time searching the internet, or as we like to say, consulting with Dr. Google.
Based on what you have told us, it seems very, very unlikely that MS is the cause of your symptons. It is even less likely that you have PPMS. This is the same opinion you received from 3 neurologists.
Obsessing about a disease you are very unlikely to have is in itself unhealthy. I would urge you to look into the cause of your obsession.
Kyle
Based on what you have told us, it seems very, very unlikely that MS is the cause of your symptons. It is even less likely that you have PPMS. This is the same opinion you received from 3 neurologists.
Obsessing about a disease you are very unlikely to have is in itself unhealthy. I would urge you to look into the cause of your obsession.
Kyle
People with PPMS do have brain lesions just not as many. I have lesions on all my brain MRIs but only three. I have them on the ventricles and brain stem. My MS specialist said I was classic for PPMS. My left leg is only weak.
Alex
Alex
COMMUNITY LEADER
Hi there,
You mentioned seeing 3 neurologists, 2 of which specialised in MS and not one had the opinion that what you experience was MS, you are acknowledging being obsessed about MS and can't let it go, and are now or are still convinced what you experience must be PPMS......
PPMS Information:
"What are the symptoms of primary progressive MS?
The symptoms of primary progressive MS are much the same as any other form of MS and these include:
• Fatigue
• Optic neuritis (loss of vision in one eye, blurred or double vision)
• Weakness of limbs
• Reduced co-ordination
• Balance problems
• Numbness
• Pins & needles
• Spasticity (stiffness or spasms in muscles)
• Bladder issues
As with any form of MS, some symptoms are more common than others. It is unusual for any two people with MS to have the exact same symptoms.
However, because those with primary progressive MS tend to have more lesions on the spinal cord, problems with walking are very common. In a recent survey we conducted, 90% of people with PPMS said they had some form of mobility problem. This usually starts with slight problems, which could include difficulty getting up the stairs or running, tripping up if not paying attention when walking or needing to rest their legs as they start to get weaker.
Another common symptom affecting mobility is drop foot - a difficulty or inability to properly lift the toe of the foot."
http://www.ms-uk.org/choicesppms
I would suggest it might help if you take a look at your clinical neurological assessment reports and if there was nothing clinically abnormal found over these years.....then your "marked leg weakness and stiffness, no other real symptoms" it is 'very unlikely' to be due to a neurological condition like MS and suggest discussing alternative explanations with your GP. The possibility of health anxiety should be seriously considered as an alternative cause, just like any other medical condition!
Cheers..........JJ
You mentioned seeing 3 neurologists, 2 of which specialised in MS and not one had the opinion that what you experience was MS, you are acknowledging being obsessed about MS and can't let it go, and are now or are still convinced what you experience must be PPMS......
PPMS Information:
"What are the symptoms of primary progressive MS?
The symptoms of primary progressive MS are much the same as any other form of MS and these include:
• Fatigue
• Optic neuritis (loss of vision in one eye, blurred or double vision)
• Weakness of limbs
• Reduced co-ordination
• Balance problems
• Numbness
• Pins & needles
• Spasticity (stiffness or spasms in muscles)
• Bladder issues
As with any form of MS, some symptoms are more common than others. It is unusual for any two people with MS to have the exact same symptoms.
However, because those with primary progressive MS tend to have more lesions on the spinal cord, problems with walking are very common. In a recent survey we conducted, 90% of people with PPMS said they had some form of mobility problem. This usually starts with slight problems, which could include difficulty getting up the stairs or running, tripping up if not paying attention when walking or needing to rest their legs as they start to get weaker.
Another common symptom affecting mobility is drop foot - a difficulty or inability to properly lift the toe of the foot."
http://www.ms-uk.org/choicesppms
I would suggest it might help if you take a look at your clinical neurological assessment reports and if there was nothing clinically abnormal found over these years.....then your "marked leg weakness and stiffness, no other real symptoms" it is 'very unlikely' to be due to a neurological condition like MS and suggest discussing alternative explanations with your GP. The possibility of health anxiety should be seriously considered as an alternative cause, just like any other medical condition!
Cheers..........JJ
Thank you for your answers!
I thought spastic paraparesis is the main symptom at onset for people who are being diagnosed with PPMS. When I look at my situation, I have both: spasticity (stiffness,..) and weakness of both my legs, my left leg being the worst. From what I read I understand that this often is associated with spinal cord lesions, at least for PPMS'ers.
My cervical MRI was clean a couple of months ago, a follow-up brain MRI will be done in the near future. The last brain MRI was done about a year ago and there the small lesions found earlier had not altered compared to 1,5 year before. Location was in the frontal and parietal lobes, so labeled as non-specific by the radiologist.
Idd, I am aware that anxiety, stress, .. can do a lot to your body, up to a point where psychosomatic symptoms begin to emerge, but still...
I thought spastic paraparesis is the main symptom at onset for people who are being diagnosed with PPMS. When I look at my situation, I have both: spasticity (stiffness,..) and weakness of both my legs, my left leg being the worst. From what I read I understand that this often is associated with spinal cord lesions, at least for PPMS'ers.
My cervical MRI was clean a couple of months ago, a follow-up brain MRI will be done in the near future. The last brain MRI was done about a year ago and there the small lesions found earlier had not altered compared to 1,5 year before. Location was in the frontal and parietal lobes, so labeled as non-specific by the radiologist.
Idd, I am aware that anxiety, stress, .. can do a lot to your body, up to a point where psychosomatic symptoms begin to emerge, but still...
I have PPMS. I did not go to a doctor with symptoms. I did not notice my symptoms they were so subtle. The doctor did a neurological exam which is reflexes and such and found abnormalities. My first MRI showed MS plus I had a positive lumbar puncture and evoked potential test. I went to a neuro opthalmologist and she found nerve damage to my eyes. All blood work for other diseases was negative. PPMS is rare only 10-15% of MS patients. It is not diagnosed for a year after you are diagnosed with MS. It does not show up until 40's or 50's. Symptoms do not come and go. I have not heard of anyone with PPMS with negative MRIs since it is marked by nerve damage not inflammation.
I have permanent double vision,cognitive issues, left side weakness, gait problems, and vertigo. I have no muscle atrophy. One leg is just weaker than the other. It is weird for MS to effect two legs equally so both thighs would not be normal. None of my symptoms come and go. Many with PPMS have at least three brain lesions. My MS Specialist said I am classic for PPMS with my three brain lesions. Also that I never have attacks. I only go to the neurologist once a year.
The majority of MS starts with the eyes. Usually Optic Neuritis which can be seen on any MRI if you ever had it. They can also see it when they look at the back of the eye and take a picture.
Alex
I have permanent double vision,cognitive issues, left side weakness, gait problems, and vertigo. I have no muscle atrophy. One leg is just weaker than the other. It is weird for MS to effect two legs equally so both thighs would not be normal. None of my symptoms come and go. Many with PPMS have at least three brain lesions. My MS Specialist said I am classic for PPMS with my three brain lesions. Also that I never have attacks. I only go to the neurologist once a year.
The majority of MS starts with the eyes. Usually Optic Neuritis which can be seen on any MRI if you ever had it. They can also see it when they look at the back of the eye and take a picture.
Alex
Hi HVB
Relatively speaking, MS is a are disease. It affects 2.3 million of worlds 7.1 billion people. Primary progress MS is even rarer still, affecting about 15% of those diagnosed with MS.
From what you describe it is unlikely you have MS, even more unlikely that you have PPMS. A stable MRI and no other evidence would have me looking in another direction.
While you're searcing for answers try not to let your imagination run wild. MS attacks the central nervous system, so the spectrum of possible symptoms is very broad. Almost any symptom you put into Google is likely include MS in the results. The likelyhood that MS is the cause of your symptoms is fairly small.
I would continue to seek medical help and not from Dr. Google :-)
Kyle
Relatively speaking, MS is a are disease. It affects 2.3 million of worlds 7.1 billion people. Primary progress MS is even rarer still, affecting about 15% of those diagnosed with MS.
From what you describe it is unlikely you have MS, even more unlikely that you have PPMS. A stable MRI and no other evidence would have me looking in another direction.
While you're searcing for answers try not to let your imagination run wild. MS attacks the central nervous system, so the spectrum of possible symptoms is very broad. Almost any symptom you put into Google is likely include MS in the results. The likelyhood that MS is the cause of your symptoms is fairly small.
I would continue to seek medical help and not from Dr. Google :-)
Kyle
It would be unusual for MRIs to remain stable over the course of years if MS was behind your issues. Patients who are not undergoing treatment could expect to see changes in that time. Even those of us on treatment often see MRI changes in that period. You state all of your other tests are negative for MS or neurological related conditions, but you do not mention any clinical exam results. These are still enormously important when it comes to diagnosing MS.
"this MS thing has become an obsession;" It does appear that your thoughts on MS in the face of the test results you have received, are irrational. This is not to say that you are not experiencing the symptoms you report, rather that it seems very unlikely it is any form of MS, much less PPMS. I do think you deserve treatment for what you're experiencing, but I do not think MS will be a piece of the puzzle.
"this MS thing has become an obsession;" It does appear that your thoughts on MS in the face of the test results you have received, are irrational. This is not to say that you are not experiencing the symptoms you report, rather that it seems very unlikely it is any form of MS, much less PPMS. I do think you deserve treatment for what you're experiencing, but I do not think MS will be a piece of the puzzle.
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