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Question: I am male, 46 years, 6.1 feet, 100kg
My query is a little long, I apologize for it. There has been a lot happening.
Symptoms:
I have been experiencing some unsteadiness and balancing difficulty for almost 2 years (from about Feb 2015). Unsteadiness increases in the dark, while walking in narrow places with obstacles, and in crowded places. It is more on some days and less on others. I also suffer from sleep apnea. I am unable to use a CPAP machine (not able to tolerate the CPAP). Other symptoms are:
- Slight loss in hearing (mild)
- Speech is normal but sometimes suddenly stops for a moment mid-speech.
I have to clear my throat to get it back.
- Occasionally some involuntary body jerks (trunk) – more while lying down
- Sometimes a feeling of light headedness (in any position)
- Occasional tingling & numbness in hands (more while holding something)
- I have a tremor in my hands – but this has been there for a very long time –
maybe 10-15 years or more
- A little clumsiness – things drop out of hands sometimes
- No urinary incontinence, but maybe a little urine retention, I am not sure. (After urination sometimes, after a few minutes I pass a little more – sometimes, not always). Sonographic study of kidneys, bladder and prostrate was normal.
Among various investigations:
MRI of spine shows a cervical cord compression – MRI last year said myelopathic changes, this year says mylomalacic changes – a doctor I consulted who saw both the films says there is not much change compared to last one
MRI of brain done 2 years back (just when the problems started) was normal
Various blood tests were largely normal. CPK was high (750+ in Oct), (1350 in Nov) but now lower (260 in Jan). Vit B12 was low initially (170) but after injections came back to 300-400. Vit D was low (15.8) but have since taken some pills for that.
Nerve conduction studies said mild to moderate degree of sensory axonal neuropathy showing a length dependent.
EMG was normal.
A vestibular study last year said ‘uncompensated vestibular lesion’ but later the doctor said that that could not explain my imbalance / unsteadiness
Had a coronary angiogram last year – showed minor plaques – no intervention was required. Medicines were given, but I have not been taking them.
ECHO shows moderate diastolic dysfunction
Possible Diagnosis given
- One neurosurgeon / neurophysician team – felt that some of the symptoms are due to the spinal cord compression – they recommended me to have a spinal surgery – posterior decompression laminectomy
- Another neurophysician who is currently examining me feels that it is early Parkinsons. He feels that the spinal cord compression is not such as to cause all my symptoms
- Another neurophysician whom I consulted this week feels that it could be Parkinsons Plus / Multiple Systems Atrophy. He suggested I have a DAT scan and another MRI of brain.
My query
1. What could it be? What is the way forward? How to know for sure what it is?
2. Will the DAT scan help?
3. Obviously I have read up about these ailments and these diagnoses are quite disturbing particularly the MSA. I would like to consult with the best specialists in this field i.e. Parkinsons / MSA for diagnosis / treatment and understanding the prognosis. Can you recommend the right person. I live in XXXXXXX but if required I can visit any other city.
My query is a little long, I apologize for it. There has been a lot happening.
Symptoms:
I have been experiencing some unsteadiness and balancing difficulty for almost 2 years (from about Feb 2015). Unsteadiness increases in the dark, while walking in narrow places with obstacles, and in crowded places. It is more on some days and less on others. I also suffer from sleep apnea. I am unable to use a CPAP machine (not able to tolerate the CPAP). Other symptoms are:
- Slight loss in hearing (mild)
- Speech is normal but sometimes suddenly stops for a moment mid-speech.
I have to clear my throat to get it back.
- Occasionally some involuntary body jerks (trunk) – more while lying down
- Sometimes a feeling of light headedness (in any position)
- Occasional tingling & numbness in hands (more while holding something)
- I have a tremor in my hands – but this has been there for a very long time –
maybe 10-15 years or more
- A little clumsiness – things drop out of hands sometimes
- No urinary incontinence, but maybe a little urine retention, I am not sure. (After urination sometimes, after a few minutes I pass a little more – sometimes, not always). Sonographic study of kidneys, bladder and prostrate was normal.
Among various investigations:
MRI of spine shows a cervical cord compression – MRI last year said myelopathic changes, this year says mylomalacic changes – a doctor I consulted who saw both the films says there is not much change compared to last one
MRI of brain done 2 years back (just when the problems started) was normal
Various blood tests were largely normal. CPK was high (750+ in Oct), (1350 in Nov) but now lower (260 in Jan). Vit B12 was low initially (170) but after injections came back to 300-400. Vit D was low (15.8) but have since taken some pills for that.
Nerve conduction studies said mild to moderate degree of sensory axonal neuropathy showing a length dependent.
EMG was normal.
A vestibular study last year said ‘uncompensated vestibular lesion’ but later the doctor said that that could not explain my imbalance / unsteadiness
Had a coronary angiogram last year – showed minor plaques – no intervention was required. Medicines were given, but I have not been taking them.
ECHO shows moderate diastolic dysfunction
Possible Diagnosis given
- One neurosurgeon / neurophysician team – felt that some of the symptoms are due to the spinal cord compression – they recommended me to have a spinal surgery – posterior decompression laminectomy
- Another neurophysician who is currently examining me feels that it is early Parkinsons. He feels that the spinal cord compression is not such as to cause all my symptoms
- Another neurophysician whom I consulted this week feels that it could be Parkinsons Plus / Multiple Systems Atrophy. He suggested I have a DAT scan and another MRI of brain.
My query
1. What could it be? What is the way forward? How to know for sure what it is?
2. Will the DAT scan help?
3. Obviously I have read up about these ailments and these diagnoses are quite disturbing particularly the MSA. I would like to consult with the best specialists in this field i.e. Parkinsons / MSA for diagnosis / treatment and understanding the prognosis. Can you recommend the right person. I live in XXXXXXX but if required I can visit any other city.
Brief Answer:
You need a careful and expert neurological examination.
Detailed Answer:
Hi,
Thank you for posting your query.
I have noted your symptoms and can understand your confusion, as you have got varying and conflicting opinions from various doctors. What you need is a careful and expert neurological examination, so that a correct diagnosis can be made.
From what you have described, it is clear that surgery would not help in most of your symptoms. So, please avoid surgery at this stage.
Imbalance, tingling, etc can be caused due to spinal cord damage, which in turn can be due to vitamin B12 deficiency. These would generally get better with vitamin B12 supplements, however, complete recovery is usually not possible.
We need to exclude Parkinson's disease/related conditions such as MSA. At XXXXXXX you can meet Dr Meenakshisundaram at Apollo Hospital, who is very good in movement disorders such as Parkinson's disease/MSA.
Please keep me informed about your progress.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
You need a careful and expert neurological examination.
Detailed Answer:
Hi,
Thank you for posting your query.
I have noted your symptoms and can understand your confusion, as you have got varying and conflicting opinions from various doctors. What you need is a careful and expert neurological examination, so that a correct diagnosis can be made.
From what you have described, it is clear that surgery would not help in most of your symptoms. So, please avoid surgery at this stage.
Imbalance, tingling, etc can be caused due to spinal cord damage, which in turn can be due to vitamin B12 deficiency. These would generally get better with vitamin B12 supplements, however, complete recovery is usually not possible.
We need to exclude Parkinson's disease/related conditions such as MSA. At XXXXXXX you can meet Dr Meenakshisundaram at Apollo Hospital, who is very good in movement disorders such as Parkinson's disease/MSA.
Please keep me informed about your progress.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you for your prompt response. I would like to ask the following:
1. Will the DAT scan & brain MRI suggested help to rule out Parkinsons / MSA?
2. Are my symptoms suggestive of Parkinsons or MSA? I understand that you cannot really tell without examining me; but based on my description of symptoms and the neurological examination report I have attached, does it suggest either of this?
3. Is it possible that the vit B 12 deficiency has already damaged the cord before I took the supplements; and this damage continues to make me unsteady? Is this damage reflected in the cervical spine MRI - is this the mylomalacic change mentioned i.e. softening of spinal cord. I also feel there is a slight worsening of balance (though I am not sure how much as there is no objective measure); can this be possible now after the vit B12 is corrected.And can it still get worse even after the B12 is corrected?
4. Could the mild to moderate sensory axonal neuropathy reported cause imbalance?
5. How to know if my tremors (which have been there for quite some time) are Parkinsons tremor or not relevant to Parkinsons?
6. Is my sleep apnea an unrelated issue or does it tie in with any of the above? Same with my voice issues.
Thank you in advance for your patience in replying to all my numerous queries. As you can appreciate it is a difficult time and your expert responses will make a lot of difference.
Thank you & Regards.
1. Will the DAT scan & brain MRI suggested help to rule out Parkinsons / MSA?
2. Are my symptoms suggestive of Parkinsons or MSA? I understand that you cannot really tell without examining me; but based on my description of symptoms and the neurological examination report I have attached, does it suggest either of this?
3. Is it possible that the vit B 12 deficiency has already damaged the cord before I took the supplements; and this damage continues to make me unsteady? Is this damage reflected in the cervical spine MRI - is this the mylomalacic change mentioned i.e. softening of spinal cord. I also feel there is a slight worsening of balance (though I am not sure how much as there is no objective measure); can this be possible now after the vit B12 is corrected.And can it still get worse even after the B12 is corrected?
4. Could the mild to moderate sensory axonal neuropathy reported cause imbalance?
5. How to know if my tremors (which have been there for quite some time) are Parkinsons tremor or not relevant to Parkinsons?
6. Is my sleep apnea an unrelated issue or does it tie in with any of the above? Same with my voice issues.
Thank you in advance for your patience in replying to all my numerous queries. As you can appreciate it is a difficult time and your expert responses will make a lot of difference.
Thank you & Regards.
Brief Answer:
Features are not typical of PD/MSA.
Detailed Answer:
Thank you for getting back with six follow up queries. My replies are below:
1. DAT scan or MRI can neither confirm, nor exclude a diagnosis of Parkinson's disease or MSA.
2. Symptoms what you have described can occur in patients with PD or MSA, however, they are not specific for those two disease. Other conditions too can cause similar symptoms. So, detailed examination and follow up is needed.
3. Yes, MRI changes as descriBed, can be due to vitamin B12 deficiency. These could have occurred before you started supplements, and as I said, the prior damage would not completely recover. Worsening would not occur once you start supplements.
4. Yes, sensory neuropathy can also cause imbalance.
5. Tremors in Parkinson's disease occur at rest (while not doing any activity) and starts on one side of body. After several years, tremors may spread to the other side of body.
6. Sleep apnea is unrelated.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Features are not typical of PD/MSA.
Detailed Answer:
Thank you for getting back with six follow up queries. My replies are below:
1. DAT scan or MRI can neither confirm, nor exclude a diagnosis of Parkinson's disease or MSA.
2. Symptoms what you have described can occur in patients with PD or MSA, however, they are not specific for those two disease. Other conditions too can cause similar symptoms. So, detailed examination and follow up is needed.
3. Yes, MRI changes as descriBed, can be due to vitamin B12 deficiency. These could have occurred before you started supplements, and as I said, the prior damage would not completely recover. Worsening would not occur once you start supplements.
4. Yes, sensory neuropathy can also cause imbalance.
5. Tremors in Parkinson's disease occur at rest (while not doing any activity) and starts on one side of body. After several years, tremors may spread to the other side of body.
6. Sleep apnea is unrelated.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you, doctor for the prompt and complete reply. Seeking your indulgence with a few more queries:
1. Will a DAT scan be harmful in any way (apart from expense)? I am asking this because somehow the doctor here seems to think it is the way to go. You also said we need to exclude PD / MSA. But if DAT scan cannot do so, what can? Or is it that only by clinical examination it can be ruled out.
2. You mentioned my symptoms can occur in PD / MSA; but can also occur in other diseases. Which other disease(s) suggest themselves in such a case?
3. My doctor had asked for a CPK blood test. It was high at 750 then went to 1350 next month but then again came to 260 the next month. I have not been taking any medication that would affect this for a long time. Is this of any significance?
4. Can a tremor that was existing for say 10-15 years be a Parkinsons tremor?
5. Doctor had also mentioned a disease SCA. Are symptoms consistent with this?
Thank you & Regards.
1. Will a DAT scan be harmful in any way (apart from expense)? I am asking this because somehow the doctor here seems to think it is the way to go. You also said we need to exclude PD / MSA. But if DAT scan cannot do so, what can? Or is it that only by clinical examination it can be ruled out.
2. You mentioned my symptoms can occur in PD / MSA; but can also occur in other diseases. Which other disease(s) suggest themselves in such a case?
3. My doctor had asked for a CPK blood test. It was high at 750 then went to 1350 next month but then again came to 260 the next month. I have not been taking any medication that would affect this for a long time. Is this of any significance?
4. Can a tremor that was existing for say 10-15 years be a Parkinsons tremor?
5. Doctor had also mentioned a disease SCA. Are symptoms consistent with this?
Thank you & Regards.
Brief Answer:
DAT scan is helpful.
Detailed Answer:
Thank you for getting back with 5 follow-up queries. My replies are below:
1. DAT scan can help in diagnosis, however, it is not confirmatory. Yes, the most important is the clinical examination.
2. The commonest cause of long duration tremors is essential tremors.
3. CPK abnormality is of no significance, as your symptoms are not suggestive of any muscle disease. Any intra-muscular injection or EMG test or a viral infection can also raise the CPK levels.
4. Yes, Parkinson's disease is a life long disease. So, the tremors in PD last for many years (the entire life).
5. SCA is also a possibility based on the symptoms and it needs to be excluded. MRI brain shows cerebellar atrophy (shrinkage of cerebellum) in SCA, which is lacking, so, it can be mostly excluded in your case.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
DAT scan is helpful.
Detailed Answer:
Thank you for getting back with 5 follow-up queries. My replies are below:
1. DAT scan can help in diagnosis, however, it is not confirmatory. Yes, the most important is the clinical examination.
2. The commonest cause of long duration tremors is essential tremors.
3. CPK abnormality is of no significance, as your symptoms are not suggestive of any muscle disease. Any intra-muscular injection or EMG test or a viral infection can also raise the CPK levels.
4. Yes, Parkinson's disease is a life long disease. So, the tremors in PD last for many years (the entire life).
5. SCA is also a possibility based on the symptoms and it needs to be excluded. MRI brain shows cerebellar atrophy (shrinkage of cerebellum) in SCA, which is lacking, so, it can be mostly excluded in your case.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you, Doctor, for the very prompt and precise replies. Just a few more issues in my mind:
1. I didn't mention these symptoms / observations in my earlier message:
- My right hand doesn't swing while walking. Left hand swings. This has been observed by my wife and also the doctor. However I can use the right hand normally; if needed I can make it swing.
- While walking, if I take larger strides it is easier. Small steps are more difficult.
- The unsteadiness is not the same every day. Some days it is more; some days it is less.
- Feel a bit sleepy in the day time. Maybe due to sleep apnea? Always fall asleep in any vehicle (as passenger of course; I don't drive).
2. Spine MRi said myelomalacic changes now, as against myelopathic changes last year. Any difference?
3. MRI brain was taken about 2 years ago, when I first started having dizziness. That was normal. Since then, it is 2 years, and unsteadiness came on and gradually worsened. Could the MRI have changed, should I repeat it now?
4. You had mentioned Dr. Meenakshisundaram, Apollo, XXXXXXX I tried searching online - I could find a Dr. Meenakshisundaram in Sooriya Hospitals, XXXXXXX but not in Apollo. Is he the one you have referred to?
Thank you. I am grateful to you for your guidance.
1. I didn't mention these symptoms / observations in my earlier message:
- My right hand doesn't swing while walking. Left hand swings. This has been observed by my wife and also the doctor. However I can use the right hand normally; if needed I can make it swing.
- While walking, if I take larger strides it is easier. Small steps are more difficult.
- The unsteadiness is not the same every day. Some days it is more; some days it is less.
- Feel a bit sleepy in the day time. Maybe due to sleep apnea? Always fall asleep in any vehicle (as passenger of course; I don't drive).
2. Spine MRi said myelomalacic changes now, as against myelopathic changes last year. Any difference?
3. MRI brain was taken about 2 years ago, when I first started having dizziness. That was normal. Since then, it is 2 years, and unsteadiness came on and gradually worsened. Could the MRI have changed, should I repeat it now?
4. You had mentioned Dr. Meenakshisundaram, Apollo, XXXXXXX I tried searching online - I could find a Dr. Meenakshisundaram in Sooriya Hospitals, XXXXXXX but not in Apollo. Is he the one you have referred to?
Thank you. I am grateful to you for your guidance.
Brief Answer:
Dr U Meenakhshi Sundaram is working at Apollo Hospitals, XXXXXXX
Detailed Answer:
Thank you for getting back with 4 follow- up queries. My replies are as follows:
1. Reduced arm swing is known to occur in patients with Parkinson's disease and other related disorders. Other two observations are not clinically significant.
2. Both mean the same.
3. MRI findings could change over time. It may be repeated after consulting the neurologist.
4. Dr U XXXXXXX Sundaram works at Apollo Hospital, XXXXXXX I found him on the Apollo website. The link is below:
https://www.yyyyy.com/physical-appointment/yyyy/yyyy/nyyyyyyyt/dr-u-meenakshisundaram
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Dr U Meenakhshi Sundaram is working at Apollo Hospitals, XXXXXXX
Detailed Answer:
Thank you for getting back with 4 follow- up queries. My replies are as follows:
1. Reduced arm swing is known to occur in patients with Parkinson's disease and other related disorders. Other two observations are not clinically significant.
2. Both mean the same.
3. MRI findings could change over time. It may be repeated after consulting the neurologist.
4. Dr U XXXXXXX Sundaram works at Apollo Hospital, XXXXXXX I found him on the Apollo website. The link is below:
https://www.yyyyy.com/physical-appointment/yyyy/yyyy/nyyyyyyyt/dr-u-meenakshisundaram
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Note: For further follow up on related General & Family Physician Click here.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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