Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology (Expert Forum)
MS or CNSV
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
MS or CNSV
by AMO, Jun 11, 2001 12:00AM
Dear Doctor,
Thank you ahead of time for reading my post and I appoligise for it's length. For the past 9 months I have been having numerous neuro problems, that at one point my doctor diagnoses as MS. It started in September, up until then I was a very physically active and healthy 44 years old woman. Starting as mild optic neruitis in the left eye but now have problems with both eyes, balance problems, and incoordination it has continued and had been unrelentless. From the beginning my doctor questioned the idea of it being MS, but possible a CNSV. I believe he thought it was MS at one point early on seeing how it looked like I had two fare-up separated in time, and started on copaxone. I did two rounds of solumedrol i.v. one in december, one in january, found very little temporary relief, Looking back now, I think it has been one long process to this point. The copaxone was started in december, my symptoms have not let up, continue to worsen, and for months my MRI always show new activity, I have had 7 thus far, but the lesions are in a pattern untypical, and quite peripheral than what he usually sees in MS patients, none periventrical, none in corpus calosum, one in the left cerebellum, one in the right parietal region was quite perpheral and looks more like gray matter as opposed to white (this statements coming from the first MIR done in september). One MRA looking at the large and med size vesseles, they looked fine, no beeding . Have had two lumbar punctures- both negative for the protein band that can show in MS patients. Have had 4 complete blood work-ups ,all results were "unremarkable". One latest blood testing looking for paraneoplastic syndrome also negative. Decided not to do an angiograph because if it did or did not show anything would have wanted a biopsy either way, so a month ago had a brain biopsy of the frontal lobe, it did not show vasculitis. But i understand that vasculitis can be "patchy" and there is only a 75% chance of findings. To put me at ease it did show "something" is going on in my cells but did not show a diagnoses , he reassuring me that I am not crazy. Chest ex-ray for scarcoidisis, neg. I will try to list symptoms, a rather lengthy ordeal, most are motor, but some mild sensory. The optic neuritis has stayed about the same, mild nystagmus,blurred vision, double vision,mild color loss, occational numbness on right side of face and head into my eyes, occational difficulty swallowing, speech problems, difficulty in word finding, scanning speech. Having more and more cognitive problem, a little short term memory, but more confusion and consentration. Parathesia in my arms into hand amd legs into feet, mild loss of feeling on legs- right a bit more than left. I get trunkal tremor, and myoclonic jerking, I am weak and discoordinated bilaterially, arms and legs left more so than right. Sometimes get a crawling senation down my legs. My gait is ataxic and wide based, right foot drop with mild spastic, I walk with more and more difficulty, do not use an aid but not more than a football field without. I get what I can only explain as "wave" through my right side of head. A couple months ago, before the biopsy, i started to have seizures, thinking it may be ischemic in orgin at first started on asprin, but they have since evolved and more jerking involved now, and am on keppra the past couple weeks working up to a tappered dose , EEG normal. Seizures usually last for 20 to 45 mintues or so, with the last one lasting a couple hour, no jerking this time but unable to move and speak, unable to get to phone. Dizziness has increased feeling dinggy more and more- i read keppra can add to that? I have been seeing just my one neurologist so far but have made appts to vist your Cleveland Clinic next month. I am traveling from out of state to do so, hoping to shed more light on this. I understand with the limited information and no records or exam it is hard for you to reply on this post, but would be reasuring to hear if we are on the right track and that this trip possibly could help. Again I very much appreciate your input and time.
Sincerely,
AMO
Thank you ahead of time for reading my post and I appoligise for it's length. For the past 9 months I have been having numerous neuro problems, that at one point my doctor diagnoses as MS. It started in September, up until then I was a very physically active and healthy 44 years old woman. Starting as mild optic neruitis in the left eye but now have problems with both eyes, balance problems, and incoordination it has continued and had been unrelentless. From the beginning my doctor questioned the idea of it being MS, but possible a CNSV. I believe he thought it was MS at one point early on seeing how it looked like I had two fare-up separated in time, and started on copaxone. I did two rounds of solumedrol i.v. one in december, one in january, found very little temporary relief, Looking back now, I think it has been one long process to this point. The copaxone was started in december, my symptoms have not let up, continue to worsen, and for months my MRI always show new activity, I have had 7 thus far, but the lesions are in a pattern untypical, and quite peripheral than what he usually sees in MS patients, none periventrical, none in corpus calosum, one in the left cerebellum, one in the right parietal region was quite perpheral and looks more like gray matter as opposed to white (this statements coming from the first MIR done in september). One MRA looking at the large and med size vesseles, they looked fine, no beeding . Have had two lumbar punctures- both negative for the protein band that can show in MS patients. Have had 4 complete blood work-ups ,all results were "unremarkable". One latest blood testing looking for paraneoplastic syndrome also negative. Decided not to do an angiograph because if it did or did not show anything would have wanted a biopsy either way, so a month ago had a brain biopsy of the frontal lobe, it did not show vasculitis. But i understand that vasculitis can be "patchy" and there is only a 75% chance of findings. To put me at ease it did show "something" is going on in my cells but did not show a diagnoses , he reassuring me that I am not crazy. Chest ex-ray for scarcoidisis, neg. I will try to list symptoms, a rather lengthy ordeal, most are motor, but some mild sensory. The optic neuritis has stayed about the same, mild nystagmus,blurred vision, double vision,mild color loss, occational numbness on right side of face and head into my eyes, occational difficulty swallowing, speech problems, difficulty in word finding, scanning speech. Having more and more cognitive problem, a little short term memory, but more confusion and consentration. Parathesia in my arms into hand amd legs into feet, mild loss of feeling on legs- right a bit more than left. I get trunkal tremor, and myoclonic jerking, I am weak and discoordinated bilaterially, arms and legs left more so than right. Sometimes get a crawling senation down my legs. My gait is ataxic and wide based, right foot drop with mild spastic, I walk with more and more difficulty, do not use an aid but not more than a football field without. I get what I can only explain as "wave" through my right side of head. A couple months ago, before the biopsy, i started to have seizures, thinking it may be ischemic in orgin at first started on asprin, but they have since evolved and more jerking involved now, and am on keppra the past couple weeks working up to a tappered dose , EEG normal. Seizures usually last for 20 to 45 mintues or so, with the last one lasting a couple hour, no jerking this time but unable to move and speak, unable to get to phone. Dizziness has increased feeling dinggy more and more- i read keppra can add to that? I have been seeing just my one neurologist so far but have made appts to vist your Cleveland Clinic next month. I am traveling from out of state to do so, hoping to shed more light on this. I understand with the limited information and no records or exam it is hard for you to reply on this post, but would be reasuring to hear if we are on the right track and that this trip possibly could help. Again I very much appreciate your input and time.
Sincerely,
AMO
Doctor's Answer
by CCF-Neuro-M.D.-RPS, Jun 11, 2001 12:00AM
Dear AMO:
I am very sorry to hear about your symptoms. Frankly, alot of what your experiencing sounds like MS. Theoptic neuritis, the progression of symptoms is worrisome as it is progressive. There are variations of MS and this is what might be occurring. It would be best to see the MRI to see where the lesions are located. You know, Charcot first described MS as a triad of scanning speech, ataxia, and muscle weakness.
How was the optic neuritis diagnosed? Neurosarcoid can give a papilits or retrobulbar neuritis that eventually develops into optic atroophy. The cerebral granulomas usually involve the leptomeninges but you do not indicate this to be the case. However, cranial nerve involvment can be seen in neurosarcoid and you do mention difficulty in speech and swallowing. Was there an elevated protein in your CSF analysis? Was there an elevated ACE ?
Mitochondrial disease can also give a optic neuritis- LHON disease, with a MS-like picture but with atypical CNS lesions. Doesn't sound like a mitochondrial cytopathy however.
Without seeing the MRI and some of your lab work, it is difficult for me to say. My guess would be a variant of MS or neurosarcoid. The difficulty is that both sould respond to steriiods. A mitochondrial disease would not respond. I am glad your coming here. I hope you get to see Jeff Cohen, MD. Let us know what turns out.
I am really sorry that I am not much help.
Sincerely,
CCF Neuro MD
I am very sorry to hear about your symptoms. Frankly, alot of what your experiencing sounds like MS. Theoptic neuritis, the progression of symptoms is worrisome as it is progressive. There are variations of MS and this is what might be occurring. It would be best to see the MRI to see where the lesions are located. You know, Charcot first described MS as a triad of scanning speech, ataxia, and muscle weakness.
How was the optic neuritis diagnosed? Neurosarcoid can give a papilits or retrobulbar neuritis that eventually develops into optic atroophy. The cerebral granulomas usually involve the leptomeninges but you do not indicate this to be the case. However, cranial nerve involvment can be seen in neurosarcoid and you do mention difficulty in speech and swallowing. Was there an elevated protein in your CSF analysis? Was there an elevated ACE ?
Mitochondrial disease can also give a optic neuritis- LHON disease, with a MS-like picture but with atypical CNS lesions. Doesn't sound like a mitochondrial cytopathy however.
Without seeing the MRI and some of your lab work, it is difficult for me to say. My guess would be a variant of MS or neurosarcoid. The difficulty is that both sould respond to steriiods. A mitochondrial disease would not respond. I am glad your coming here. I hope you get to see Jeff Cohen, MD. Let us know what turns out.
I am really sorry that I am not much help.
Sincerely,
CCF Neuro MD
About a year ago, I went to the Neurologist and he did a lot of preliminary tests, like the vision test and coordination, which I did not pass. He did a memory test which I did not pass. He ordered an evoked potential which there were a lot of abnormalities, but was not specified to me. They did a NCV study and I kept feeling nothing/ the tech finally turned it up so high that it left bruises on me. The MRI of my head, I do not know what it showed. But with all of this the Neurologist said that even though the evoked potential showed that I do have MS, he said that I don't. I know that the degree of the Arachnoiditis has taken 0over my body, this same Neurologist said that I am the worse case of Arachnoiditis that he has seen. I would like to know if there is some other way to determine if I have MS. I go to see the Opthamologist in September. I am having the hand and arms tremors really bad right now. I also forgot to mention that I also have cervical stenosis. I am just afraid that if I do have MS and am not on the right kind of medication, what will happen to me. I go through enough with the Arachnoiditis. The medications that I am on are 60mgs, twice a day of Morphine, 30 mgs Tylenol #3 2 tablets every 4-6 hours, Baclofen 3 times a day. Imipranine 3 times a day. Neurontin, 300mg capsules 2 three times a day. Meclizine for the dizzy spells,
The burning in the back of my head on the right side comes on so suddenly and so intense that sometimes it brings tears to my eyes.
Like I said the post that I am replying to just sounded so familiar as to my symptoms.
I get treated at a VA Medical Center and they are very good. I do get good care there, I just feel that they are missing something. If I have MS, I need to be on the right kind of medication. My condition has definitely gotten worse within the last 4 months or so. I am so weak and the tremors are getting worse. I can still walk a little, but have to hold on to things.
Thank you for your time, I appreciate it, if you could tell me something.
Kathy Stevenson
***@****