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Neurology (Expert Forum)
Is this MS?
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Is this MS?
by cs, Jul 11, 2000 12:00AM
My husband is a 30 yr. Old male who has shown multiple symptoms and seen several doctors with a diagnosis at one point of monosymptomatic demyelinating disease. Early in 1999 he began feeling generally fatigued and ran a mild fever for a few days, which came and went. He didn’t think much of this and did not see a doctor for it. Also, in early January he went to a local optometrist for a general eye exam for his glasses and the optometrist noticed small hemorrhages in the left eye. He referred my husband to an ophthalmologist nearby who confirmed retinal hemorrhages due to multiple venous occlusions of the vessels which were described as telangiectatic. He suggested that we wait to see if it would resolve on its own since it was mild. After he was rechecked the hemorrhages had not resolved and he suggest we see an ophthalmologist at the University of Iowa that he knew. The visit to the Univ. of Iowa occurred after the following events.
A few months after the initial feeling of fatigue and mild fever he was shingling the roof of a house and during the night (he woke up with it in the morning) he noticed numbness in his right fingertips. He also noticed a large reddened area that appeared to be an insect bite or bruise on his left arm, but he did not recall being bitten by anything or hitting his arm that day. This continued and he went to see a general practitioner for it. During the physical they discussed the retinal hemorrhage and the doctor decided to run an ECG which was abnormal (I’m not sure exactly what the abnormality was) and the doctor said it could be from a possible mild heart attack at one time. He sent by husband to a nearby hospital to have an echocardiogram performed just to check everything. The echo was normal and no further tests were performed to double check the original abnormality. He has been known to complain of chest pains off and on (approx. every 2 months or so), not a pain like tightness, but a sharp pain which he describes as feeling like he got hit in the chest really hard. His sternum will also ‘pop’ once in a while (a deep, loud ‘thunk’) and it will be really sore sometimes. He does smoke approx. 2 packs/day. An MRI was also scheduled at the hospital due to the numbness and vascular concerns. The results showed 4-5 white matter lesions, some were located periventricular and I believe most of them, if not all, were on the left side of the brain. From here he went to a local neurologist who performed an EMG on his right arm which was normal (tested for carpal tunnel). Because of the wiat required before more tests could be done we decided to go to Mayo Clinic taking a chance at a walk in appt. He got to see a neurologist there that day who performed another MRI with similar results and also the following tests with their results: Phosp/Cardiolipin AB – IgG phoslipid Ab = neg, IgM pholipid AB = pos. 1:16; L.P. Observation – Initial pressure = 190 mm H2O, Interspace = L4-5, Quantity = 10ml spinal; CSF IgG Index = 1.09 index, IgG (CSF) = 9.55mg/dl, Albumin (CSF) = 40mg/dl, IgG (s) = 982mg/dl, Albumin (s) = 4480mg/dl, IgG/Albumin (CSF) = 0.24 ratio, IgG/Albumin (s) = 0.22 ratio, Synthesis rate (CSF) = 26.99mg/24hrs, unique CSF bands = 2; CSF tests – Glucose (CSF) = 54mg/dl, Protein Total (CSF) = 86mg/dl; Body Fluid Cell Count – Fluid type = CSF, Gross Appear. = clear, Total Nucl. Cells = 10/ul, Erythrocytes = 0/ul, lymphocytes = 92%, monocytes = 8%.
The neurologist seemed unsure at this point of a diagnosis of MS or some sort of vasculitis. I believe he also did an estimated Sed. Rate which was normal. We informed him of the retinal hemorrhage and he seemed concerned so he set up an appt with their ophthalmologist. This exam, I feel, was not very throrough compared to the exam performed by our local ophthalmologist, and they did not se the retinal hemorrhage. Because this was not seem they treated him as if there was never one present. This was disturbing because we had it rechecked later at home and it was still present and later had to be corrected with a laser. I am concerned that the finding of the hemorrhage may have led the Mayo neurologist in another direction. The neurologist sent by husband to a different neurologist at Mayo who worked more specifically with MS patients to get his opinion. This doctor did not examine my husband, a doctor visiting from Canada under supervision of the neurologist is the one who performed the exam. The doctor we were referred to did not spend more than 5 minutes with us the whole time and then diagnosed him with monosymptomatic demyelinating disease based on the MRI results and symptoms (the CSF results were pending at this time). He said we would need to wait and see if he has another ‘episode’ or ‘attack’. The only problem is his symptoms have never gone away and they do not get worse the way other people describe exacerbations. His symptoms are present 95% of the time every day and he feels they are very slowly progressing. I don’t physically see progression of his physical neurologic symptom (foot slapping the ground after waling a while- not real obvious), but he feels more fatigued. He has horrible mornings where he doesn’t want to get up and then at bedtime is wide awake and cannot sleep, which is likely contributing to his fatigue. He says the numbness comes and goes within the day and he will feel pretty good one time and a few hours later feel like he won’t make it through work. His job involves operating heavy equipment for a county road department.
While he was at the Univ. of Iowa for his eye we decided to get a second opinion from a neurologist there. A thorough neurologic exam was performed and the test results from the CSF tap were provided to them. They ran several additional tests: CBC/Chem, B12 w/ IFBA, Folate, Rapid Plasmin Reagin, ESR, TSh w/ free T4 if TSH abnormal, urinalysis, anticardiolipin (1:38IgM), ANA, dsDNA, toxoplasma IgM v IgG, ACE for sarcoidosis, Rheumatiod Factor. All results were normal except the anticardiolipin IgM which she said was not significant for any disease process. After a lot of tests and several more visits, including visits with a rheumatologist, cardiologist, and pulmonologist they worked him up for possible sarcoidosis. Thoracic radiographs were taken and a gallium scan was performed which resulted with uptake in the salivary glands. They then performed a CT scan but could not identify any areas of the lungs to biopsy for sarcoidosis. He was found to have a nasal polyp from the very first MRI and so he is supposed to be scheduled to have that removed and analyzed for any signs of vascular disease or sarcoid. He also had pressured tested in both arms to compare differences. The first time the test was run there was significant difference between the two arms so the technician ran it two more times with similar results. After the vascular doctor saw the results he had the test rerun which was then normal. He said the initial test must be due to faulty equipment and said there was nothing to worry about based on the other tests performed. He had ultrasound of his carotids which were normal also. The initial pressure differences in his arms is till of concern to us, especially since the numb arm was the one that showed the abnormal pressure. The neurologist at the Univ. of Iowa is still unsure of a diagnosis although she seems hesitant to say he has MS. She says she want to wait for the results from the nasal polyp. We are very frustrated at this point. He has been prescribed amantadine for the fatigue but does not want to take anything until he knows more about what is going on. He would like to get another opinion if possible and therefore, does not want to risk taking any medication for fear it may mess up the results of future diagnostic tests. He is normally a very active person, by that I mean he likes to be doing things all the time, he is under a lot of stress and has been for some time, and he also seems to be somewhat depressed which is understandable to me after all the frustrations with finding out what is going on. We feel a lot of his symptoms and test results point toward MS, yet a lot of them do not. If it is MS we would like a more definite answer and explanation so we can start him on any possible treatments.
Within the past year he has shown all the symptoms mentioned throughout the history above in addition to the following: joint pain (esp. elbows, knees and fingers), tight feeling in calf muscle of affected leg, headaches (sever at times- he often wakes up with them in the morning), there was a period of time where he felt light-headed so we checked his blood pressure at home and it was elevated at times but not consistently, numbness over left jaw line and on back of scalp on left side (occurred one time lasting for a few days and hasn’t had since), tinnitus (severe at times), red spots which appear and do not seem to go away (usually pea size on schinns, neck, feet), he had one episode of a vessel on the top side of his forearm which was raised and hard when palpated – it stayed this way for approx. 3 days and then was normal again.
We are desperate for help at this point and are willing to get another opinion if you feel it would help. I don’t know where else to turn from here and would appreciate any help in direction. I apologize for the length of this message but I felt it was necessary to give a complete history in order to receive the best suggestion for our next step. Thank you in advance for any help. CS
A few months after the initial feeling of fatigue and mild fever he was shingling the roof of a house and during the night (he woke up with it in the morning) he noticed numbness in his right fingertips. He also noticed a large reddened area that appeared to be an insect bite or bruise on his left arm, but he did not recall being bitten by anything or hitting his arm that day. This continued and he went to see a general practitioner for it. During the physical they discussed the retinal hemorrhage and the doctor decided to run an ECG which was abnormal (I’m not sure exactly what the abnormality was) and the doctor said it could be from a possible mild heart attack at one time. He sent by husband to a nearby hospital to have an echocardiogram performed just to check everything. The echo was normal and no further tests were performed to double check the original abnormality. He has been known to complain of chest pains off and on (approx. every 2 months or so), not a pain like tightness, but a sharp pain which he describes as feeling like he got hit in the chest really hard. His sternum will also ‘pop’ once in a while (a deep, loud ‘thunk’) and it will be really sore sometimes. He does smoke approx. 2 packs/day. An MRI was also scheduled at the hospital due to the numbness and vascular concerns. The results showed 4-5 white matter lesions, some were located periventricular and I believe most of them, if not all, were on the left side of the brain. From here he went to a local neurologist who performed an EMG on his right arm which was normal (tested for carpal tunnel). Because of the wiat required before more tests could be done we decided to go to Mayo Clinic taking a chance at a walk in appt. He got to see a neurologist there that day who performed another MRI with similar results and also the following tests with their results: Phosp/Cardiolipin AB – IgG phoslipid Ab = neg, IgM pholipid AB = pos. 1:16; L.P. Observation – Initial pressure = 190 mm H2O, Interspace = L4-5, Quantity = 10ml spinal; CSF IgG Index = 1.09 index, IgG (CSF) = 9.55mg/dl, Albumin (CSF) = 40mg/dl, IgG (s) = 982mg/dl, Albumin (s) = 4480mg/dl, IgG/Albumin (CSF) = 0.24 ratio, IgG/Albumin (s) = 0.22 ratio, Synthesis rate (CSF) = 26.99mg/24hrs, unique CSF bands = 2; CSF tests – Glucose (CSF) = 54mg/dl, Protein Total (CSF) = 86mg/dl; Body Fluid Cell Count – Fluid type = CSF, Gross Appear. = clear, Total Nucl. Cells = 10/ul, Erythrocytes = 0/ul, lymphocytes = 92%, monocytes = 8%.
The neurologist seemed unsure at this point of a diagnosis of MS or some sort of vasculitis. I believe he also did an estimated Sed. Rate which was normal. We informed him of the retinal hemorrhage and he seemed concerned so he set up an appt with their ophthalmologist. This exam, I feel, was not very throrough compared to the exam performed by our local ophthalmologist, and they did not se the retinal hemorrhage. Because this was not seem they treated him as if there was never one present. This was disturbing because we had it rechecked later at home and it was still present and later had to be corrected with a laser. I am concerned that the finding of the hemorrhage may have led the Mayo neurologist in another direction. The neurologist sent by husband to a different neurologist at Mayo who worked more specifically with MS patients to get his opinion. This doctor did not examine my husband, a doctor visiting from Canada under supervision of the neurologist is the one who performed the exam. The doctor we were referred to did not spend more than 5 minutes with us the whole time and then diagnosed him with monosymptomatic demyelinating disease based on the MRI results and symptoms (the CSF results were pending at this time). He said we would need to wait and see if he has another ‘episode’ or ‘attack’. The only problem is his symptoms have never gone away and they do not get worse the way other people describe exacerbations. His symptoms are present 95% of the time every day and he feels they are very slowly progressing. I don’t physically see progression of his physical neurologic symptom (foot slapping the ground after waling a while- not real obvious), but he feels more fatigued. He has horrible mornings where he doesn’t want to get up and then at bedtime is wide awake and cannot sleep, which is likely contributing to his fatigue. He says the numbness comes and goes within the day and he will feel pretty good one time and a few hours later feel like he won’t make it through work. His job involves operating heavy equipment for a county road department.
While he was at the Univ. of Iowa for his eye we decided to get a second opinion from a neurologist there. A thorough neurologic exam was performed and the test results from the CSF tap were provided to them. They ran several additional tests: CBC/Chem, B12 w/ IFBA, Folate, Rapid Plasmin Reagin, ESR, TSh w/ free T4 if TSH abnormal, urinalysis, anticardiolipin (1:38IgM), ANA, dsDNA, toxoplasma IgM v IgG, ACE for sarcoidosis, Rheumatiod Factor. All results were normal except the anticardiolipin IgM which she said was not significant for any disease process. After a lot of tests and several more visits, including visits with a rheumatologist, cardiologist, and pulmonologist they worked him up for possible sarcoidosis. Thoracic radiographs were taken and a gallium scan was performed which resulted with uptake in the salivary glands. They then performed a CT scan but could not identify any areas of the lungs to biopsy for sarcoidosis. He was found to have a nasal polyp from the very first MRI and so he is supposed to be scheduled to have that removed and analyzed for any signs of vascular disease or sarcoid. He also had pressured tested in both arms to compare differences. The first time the test was run there was significant difference between the two arms so the technician ran it two more times with similar results. After the vascular doctor saw the results he had the test rerun which was then normal. He said the initial test must be due to faulty equipment and said there was nothing to worry about based on the other tests performed. He had ultrasound of his carotids which were normal also. The initial pressure differences in his arms is till of concern to us, especially since the numb arm was the one that showed the abnormal pressure. The neurologist at the Univ. of Iowa is still unsure of a diagnosis although she seems hesitant to say he has MS. She says she want to wait for the results from the nasal polyp. We are very frustrated at this point. He has been prescribed amantadine for the fatigue but does not want to take anything until he knows more about what is going on. He would like to get another opinion if possible and therefore, does not want to risk taking any medication for fear it may mess up the results of future diagnostic tests. He is normally a very active person, by that I mean he likes to be doing things all the time, he is under a lot of stress and has been for some time, and he also seems to be somewhat depressed which is understandable to me after all the frustrations with finding out what is going on. We feel a lot of his symptoms and test results point toward MS, yet a lot of them do not. If it is MS we would like a more definite answer and explanation so we can start him on any possible treatments.
Within the past year he has shown all the symptoms mentioned throughout the history above in addition to the following: joint pain (esp. elbows, knees and fingers), tight feeling in calf muscle of affected leg, headaches (sever at times- he often wakes up with them in the morning), there was a period of time where he felt light-headed so we checked his blood pressure at home and it was elevated at times but not consistently, numbness over left jaw line and on back of scalp on left side (occurred one time lasting for a few days and hasn’t had since), tinnitus (severe at times), red spots which appear and do not seem to go away (usually pea size on schinns, neck, feet), he had one episode of a vessel on the top side of his forearm which was raised and hard when palpated – it stayed this way for approx. 3 days and then was normal again.
We are desperate for help at this point and are willing to get another opinion if you feel it would help. I don’t know where else to turn from here and would appreciate any help in direction. I apologize for the length of this message but I felt it was necessary to give a complete history in order to receive the best suggestion for our next step. Thank you in advance for any help. CS
Doctor's Answer
by CCF Neuro[P] MD, RPS, Jul 11, 2000 12:00AM
Dear CS:
Sorry to hear about your husband's problem. As you know, MS is a clinical diagnosis based on relapsing and remitting symptoms (hence the name multiple). I would suggest that you get a second opinion of the MS diagnosis. If the MRI shows lesions of various ages, it would likely be MS. One should be able to tell is the lesions occurred at various time, a good neuroradiologist will be able to tell you. If the lesions are of the same age, then he could have acute disseminated encephalomyelitis (monosymptomatic demyelinating disease?). I would not be too worried about the anticardiolipin antibody, as the titer is low.
I think the second opinion is a good idea. At least with someone who will spend some time with you.
Sincerely,
CCF Neuro MD
Sorry to hear about your husband's problem. As you know, MS is a clinical diagnosis based on relapsing and remitting symptoms (hence the name multiple). I would suggest that you get a second opinion of the MS diagnosis. If the MRI shows lesions of various ages, it would likely be MS. One should be able to tell is the lesions occurred at various time, a good neuroradiologist will be able to tell you. If the lesions are of the same age, then he could have acute disseminated encephalomyelitis (monosymptomatic demyelinating disease?). I would not be too worried about the anticardiolipin antibody, as the titer is low.
I think the second opinion is a good idea. At least with someone who will spend some time with you.
Sincerely,
CCF Neuro MD
