Aa
To Patsy10
Patsy , I can't find a post where you describe all your problems in detail. Do you know if you have ever been diagnosed with upper motor neuron disease? That is, problems which were clearly in the brain, brainstem, or spinal cord? Or have you had peripheral neuropathy, fatigue, sensory symptoms and pain?
I brought up all your 145 posts, but I can't read them all. I did see at one point you were treated for Lyme disease, but it's not clear if you thought that ended up being valid. I also saw a reference to blurred vision. Did you have optic neuritis?
I ask these questions because I have recently become aware of a group of disorders called CIDP - Chronic Inflammatory Demyelinating Polyradiculopathy. This is a group of autoimmune illnesses often sparked by infection that is characterized only by lower neuron disease - that is peripheral neuropathy. the process does attack the myelin, just as in MS, but is peripheral instead. There is overlap in the presentation with ALS (it isn't ALS, but may closely mimic it). The point is many forms are VERY TREATABLE.
I didn't know if you have already had this excluded. If you did and it was some time ago, they are realizing that the spectrum of CIDP is much broader than previously thought and that a lot of people were excluded who actually did have it.
Here are 3 links: If this is old news and long since "done that," I apologize.
http://members.shaw.ca/btillieribm/cidp.htm
http://millercenter.uchicago.edu/learnaboutpn/typesofpn/inflammatory/cidp.shtml
http://autoimmunedisease.suite101.com/article.cfm/cidp
The last is the best discussion. Quix
I brought up all your 145 posts, but I can't read them all. I did see at one point you were treated for Lyme disease, but it's not clear if you thought that ended up being valid. I also saw a reference to blurred vision. Did you have optic neuritis?
I ask these questions because I have recently become aware of a group of disorders called CIDP - Chronic Inflammatory Demyelinating Polyradiculopathy. This is a group of autoimmune illnesses often sparked by infection that is characterized only by lower neuron disease - that is peripheral neuropathy. the process does attack the myelin, just as in MS, but is peripheral instead. There is overlap in the presentation with ALS (it isn't ALS, but may closely mimic it). The point is many forms are VERY TREATABLE.
I didn't know if you have already had this excluded. If you did and it was some time ago, they are realizing that the spectrum of CIDP is much broader than previously thought and that a lot of people were excluded who actually did have it.
Here are 3 links: If this is old news and long since "done that," I apologize.
http://members.shaw.ca/btillieribm/cidp.htm
http://millercenter.uchicago.edu/learnaboutpn/typesofpn/inflammatory/cidp.shtml
http://autoimmunedisease.suite101.com/article.cfm/cidp
The last is the best discussion. Quix
hey patsy
I have a new dr and he was saying that some vitamins can be toxic and b6 was one of them...it's reassuring to finally have a dr that can give me some explanation...i'm going to be seeing a toxicologist and will keep you posted on anything he/she says.
I have a new dr and he was saying that some vitamins can be toxic and b6 was one of them...it's reassuring to finally have a dr that can give me some explanation...i'm going to be seeing a toxicologist and will keep you posted on anything he/she says.
My last MRI of the brainstem and spine was in Feb. The neuro said he was suspicious of three or four areas that the neuroradiologist did not highlight or report. So when I developed L'hermitte's sign - pain/electrical shock in the body somewhere when I flexed my neck - he ordered the MRI on the newest generation MRI - GE T3 (3 Tesla pwer magnet). He totally expected it.
Quix
Quix
Geez Quix, I'm just so sorry to hear that. I was hoping it would look good and it was something else. How long ago was your last MRI?
I do have more lesions. I got my results today to find 6 old lesions, 2 each in the medulla, the cervical spine and the thoracic spine. I've been slam-dunked. Boy, it really speaks to knowing in MS that many/nost of the lesions have been invisble to current technology. Sheeeesh! Quix
Yeah, I should have more lesions, but , in diagnosing MS, physical deficits (like vision loss, spasticity, weakness, reflexes) are regarded as lesions. I don't know if you read my post about T-lynn (a poster here and on the MS site) had 7 years of symptoms and the first MRI change seen was global atrophy. She had had so many invisible lesions as to reduce the volume of her brain. Only now, with the higher resolution MRI's are her lesions showing up. I would like to see a lesion on my spine when I get the report Monday, though I have little hope for such "luck." Maybe I'll lose my card-carrying privileges. lol.
Electrodiagnostic testing should certainly include ability to do EMG. Good luck with him!
Yes, I started Avonex (one IM injection per week) a month ago. I do have the myalgias as side effects, but they are tolerable. My disease pattern has been weird. My MS specialist put me in the RR category on the basis of so few MRI lesions. He said that people with PP are typically loaded with lesions. However, when I read carefully the four categories, the one I fit is Progressive, Relapsing. I have had steady and progressive loss of function, but also have had 3 three clear "attacks." where symptoms have appeared, remained and then improved. All but one, though have left residual damage. The progressive types, both primary and secondary do not appear to respond to the disease-altering medications.
I wish that I could put something together for your illness that could be taken somewhere and verified. This is just fanciful thinking. When I get into the new neurology literature, I barely can understand (often can not) and then I can't retain it. But I'm much better now than when I first came to this forum at recognizing some patterns.
Is there any way you could start over? By this I mean, collect the data (results), put together a timeline, and approach other centers with the info without the bias of the MD's who have dismissed your complaints. Either put together a coherent, succinct package of info and mail it to heads of neurology departments at some major centers and hope for some answers. I did this back in the 90's with a pelvic pain syndrome, and received about a dozen of the most thoughtful and compassionate replies.
Alternatively, could you do it and go to another neurologist at a center and see if someone could evaluate you fresh?
Quix
Electrodiagnostic testing should certainly include ability to do EMG. Good luck with him!
Yes, I started Avonex (one IM injection per week) a month ago. I do have the myalgias as side effects, but they are tolerable. My disease pattern has been weird. My MS specialist put me in the RR category on the basis of so few MRI lesions. He said that people with PP are typically loaded with lesions. However, when I read carefully the four categories, the one I fit is Progressive, Relapsing. I have had steady and progressive loss of function, but also have had 3 three clear "attacks." where symptoms have appeared, remained and then improved. All but one, though have left residual damage. The progressive types, both primary and secondary do not appear to respond to the disease-altering medications.
I wish that I could put something together for your illness that could be taken somewhere and verified. This is just fanciful thinking. When I get into the new neurology literature, I barely can understand (often can not) and then I can't retain it. But I'm much better now than when I first came to this forum at recognizing some patterns.
Is there any way you could start over? By this I mean, collect the data (results), put together a timeline, and approach other centers with the info without the bias of the MD's who have dismissed your complaints. Either put together a coherent, succinct package of info and mail it to heads of neurology departments at some major centers and hope for some answers. I did this back in the 90's with a pelvic pain syndrome, and received about a dozen of the most thoughtful and compassionate replies.
Alternatively, could you do it and go to another neurologist at a center and see if someone could evaluate you fresh?
Quix
Ok I read your posts and the links you gave me. Thanks. You got treated badly as well. It's criminal. My symptoms fit the CIDP. The only thing that makes me question it is the loss of reflexes and high protein in the spinal tap. My LP was completely normal. I had profound hyperreflexia. It did resolve although my knee reflexes are fairly brisk still. You are correct, the neck issue really complicated the picture. I had these symptoms before in 1993. It lasted for about 5 years and then resolved.
I'm so sick of neuro's not believing me. Tuesday I see the FMS specialist for a follow-up. He also specializes in "electrodiagnostic testing". I wonder if that means he does EMG's or maybe just nerve conduction studies. I'm going to ask him for the test. If he says no then I'll ask my internal medicine doctor to order it. I can't get anywhere with neuro's.
You sound like you are pretty bad off in a short period of time. I would expect more lesions in your CNS. Do you relapse and remit or is it continuous. If I have MS I would think it is the PP type. It never goes away. Are you on the injections for MS?
I'm so sick of neuro's not believing me. Tuesday I see the FMS specialist for a follow-up. He also specializes in "electrodiagnostic testing". I wonder if that means he does EMG's or maybe just nerve conduction studies. I'm going to ask him for the test. If he says no then I'll ask my internal medicine doctor to order it. I can't get anywhere with neuro's.
You sound like you are pretty bad off in a short period of time. I would expect more lesions in your CNS. Do you relapse and remit or is it continuous. If I have MS I would think it is the PP type. It never goes away. Are you on the injections for MS?
Clearly Fibro can coexist with other neuro diseases. So scratch the CC for you! darn..
Have you been tested for myasthenia?
Yes I have one lonesome, solitary, classic ovoid plaque in my frontal lobe. Unchanged over the last two years. The "evil neuro" dismissed it as a UBO (Unidentified Bright Object - normal with age) On the spine series last Feb my MS neuro said he saw a couple supsicious areas in the cervical spine that the neuroradiologist did not mention. They weren't enough to call lesions, but he was suspicious anyway. Did you read my write up (link?) Just cut and past the address into the address window of your browser.
Did your hyperreflexia resolve? You also had spinal surgery. Certainly that muddies the analysis of your symptoms. Someone with a neuro disease can also have separate structural problems causing pain and abnormal nerve signals. I'm going back to CIDP as a consideration. Yes you need a new battery of EMG and NCS with the nerve studies being the most important. Consider finding a neuro with some expertise in CIDP.
Quix
Have you been tested for myasthenia?
Yes I have one lonesome, solitary, classic ovoid plaque in my frontal lobe. Unchanged over the last two years. The "evil neuro" dismissed it as a UBO (Unidentified Bright Object - normal with age) On the spine series last Feb my MS neuro said he saw a couple supsicious areas in the cervical spine that the neuroradiologist did not mention. They weren't enough to call lesions, but he was suspicious anyway. Did you read my write up (link?) Just cut and past the address into the address window of your browser.
Did your hyperreflexia resolve? You also had spinal surgery. Certainly that muddies the analysis of your symptoms. Someone with a neuro disease can also have separate structural problems causing pain and abnormal nerve signals. I'm going back to CIDP as a consideration. Yes you need a new battery of EMG and NCS with the nerve studies being the most important. Consider finding a neuro with some expertise in CIDP.
Quix
I so understand what you are going through. I have been through the same emotions. I'm sure you feel helpless. I am so touched by your courage and caring for other people. I think us healthcare people handle things a little different, probably worse, than others. I was just so depressed when this first started. I really wished I would just die. As time has gone on, I am thankful for every day. As bad as I feel, there are many others worse off. Like my husband says, "you are still upright". I guess he is right. I am still able to work part-time. Who knows what the future will bring for us.
I did read the post you mentioned above. I was not aware that MS can cause cerebral atrophy. I always thought of the lesions as the main part of diagnosing MS. I work with someone who is on Avonex. She is doing well. She is about 52. About the same time my symptoms started she had a sudden episode of left- sided paralysis at work. Everyone thought it was a stroke but it turned out to be MS. She had positive LP, MRI etc.. She is actually in better shape than I am. She works 40 hrs a week. Her repeat MRI after one year on Avonex was unchanged. So, there is hope for improvement. I so hope you go into remission.
I think I'm done with neuro's at the present time. I never considered an opinion elsewhere, online, or out of state. I will have to consider this.
I will ask for the EMG, and at the least, a nerve conduction test when I see the fibro doc on Tuesday. He is a very kind, caring man. Actually, he has fibro himself. He is a nationally known fibro specialist. I will post to you how the appt. went.
Take care,
Patsy
I did read the post you mentioned above. I was not aware that MS can cause cerebral atrophy. I always thought of the lesions as the main part of diagnosing MS. I work with someone who is on Avonex. She is doing well. She is about 52. About the same time my symptoms started she had a sudden episode of left- sided paralysis at work. Everyone thought it was a stroke but it turned out to be MS. She had positive LP, MRI etc.. She is actually in better shape than I am. She works 40 hrs a week. Her repeat MRI after one year on Avonex was unchanged. So, there is hope for improvement. I so hope you go into remission.
I think I'm done with neuro's at the present time. I never considered an opinion elsewhere, online, or out of state. I will have to consider this.
I will ask for the EMG, and at the least, a nerve conduction test when I see the fibro doc on Tuesday. He is a very kind, caring man. Actually, he has fibro himself. He is a nationally known fibro specialist. I will post to you how the appt. went.
Take care,
Patsy
Did you have lesions on MRI? You sound like you've been through the ringer too.
Yes I had VEP's and somatosensory. Normal. Those were done at Cleveland Clinic in 1/06. I live in Ohio. My EMG was done 12/05, six months after it all started. This is what I want repeated now. I was only a few months into symptoms in 12/05. My CPK was normal as well as aldolase. The only myopathy test that was abnormal was pyruvate. I didn't see the result. He just said it was slightly elevated. These labs were recent. I also had a toxic B6 level but he didn't know why. He did not repeat it. I had a repeat brain and c spine MRI in the past few months which were normal except a small amount of Chiari 1 malformation and a small meningioma touching my cerebellum.
Unfortunately, most of my bad experiences with doctors were at Cleveland Clinic. They were rude and arrogant. I even saw an MS specialist there last year. He said no MS. Did think symptoms were consistent with lyme but said no lyme after the test was negative. He seemed ok at the time until I read my chart later. FMS/CFS, somatization. I was furious.
I saw a fibro specialist. I did have 14/18 tender points. I think I have way too many symptoms for it to be just fibro.
Patsy
Yes I had VEP's and somatosensory. Normal. Those were done at Cleveland Clinic in 1/06. I live in Ohio. My EMG was done 12/05, six months after it all started. This is what I want repeated now. I was only a few months into symptoms in 12/05. My CPK was normal as well as aldolase. The only myopathy test that was abnormal was pyruvate. I didn't see the result. He just said it was slightly elevated. These labs were recent. I also had a toxic B6 level but he didn't know why. He did not repeat it. I had a repeat brain and c spine MRI in the past few months which were normal except a small amount of Chiari 1 malformation and a small meningioma touching my cerebellum.
Unfortunately, most of my bad experiences with doctors were at Cleveland Clinic. They were rude and arrogant. I even saw an MS specialist there last year. He said no MS. Did think symptoms were consistent with lyme but said no lyme after the test was negative. He seemed ok at the time until I read my chart later. FMS/CFS, somatization. I was furious.
I saw a fibro specialist. I did have 14/18 tender points. I think I have way too many symptoms for it to be just fibro.
Patsy
I'm taking a break from bill-paying (Easy come and easy go - but mostly easy go, alas..)
Where do you live, US? UK? I wish I could remember everyone's details.
I too have had sensations where it felt like water hitting me. In my case it was the sudden sensation of warm water runing down my right inner thigh. I kept grabbing myself , sure I was being incontinent. What a sight!! lol
I wrote up my whole story a couple times: Here is the post from the MS forum:
http://www.medhelp.org/posts/show/1083
I'm awaiting the results of a new MRI of my spine. I'm having L leg zaps with every flex of my neck, L'Hermitte's Sign. It's becoming increasingly disturbing/painful. I keep gasping, and this frightens my family. It is easier when I am alone and there is no one to worry. They're looking for a new spine lesion. It would be great to have one more positive sign. That would "nail the diagnosis." Hey! We could have a "Diagnosis Party!" I suspect it will be normal like most of my tests. My only "salvation" has been the spasticity, hyperflexia with clonus, and the incontinence AND finding a good MS doc willing to see the whole process in one picture.
CIDP (BTW, did you read those articles? What did you think?) has normal MRI's and LP results. The clues are in the nerve conduction studies and some serologies. How long ago were your nerve studies? And how thorough were they? Also the diagnosis of optic neuritis is made by Visual Evoked Potentials, not MRI. If you have not had that, you should.
Have you been tested for Myasthenia Gravis? It can present with a diffuse picture of neuropathy and blurred vision.
The hyperrelexia speaks to upper motor neuron disease., so maybe it isn't you. CIDP is more likely to have absent reflexes. Oh, Well.. I'll keep reading.
Why is it that you do not believe fibro, at least in part? It is a real entity, suffered by 1000's. Is it the nebulousness - the sense that is is just not a satisfying explanation? You have a lot of muscle pain. Have they measured a CK (creatine kinase) or a Muscle-Specific CK, or serum aldolase during a bad time?
Have you been seen by a good reputable center - like the Cleveland Clinic?
We'll talk later. Quix
Where do you live, US? UK? I wish I could remember everyone's details.
I too have had sensations where it felt like water hitting me. In my case it was the sudden sensation of warm water runing down my right inner thigh. I kept grabbing myself , sure I was being incontinent. What a sight!! lol
I wrote up my whole story a couple times: Here is the post from the MS forum:
http://www.medhelp.org/posts/show/1083
I'm awaiting the results of a new MRI of my spine. I'm having L leg zaps with every flex of my neck, L'Hermitte's Sign. It's becoming increasingly disturbing/painful. I keep gasping, and this frightens my family. It is easier when I am alone and there is no one to worry. They're looking for a new spine lesion. It would be great to have one more positive sign. That would "nail the diagnosis." Hey! We could have a "Diagnosis Party!" I suspect it will be normal like most of my tests. My only "salvation" has been the spasticity, hyperflexia with clonus, and the incontinence AND finding a good MS doc willing to see the whole process in one picture.
CIDP (BTW, did you read those articles? What did you think?) has normal MRI's and LP results. The clues are in the nerve conduction studies and some serologies. How long ago were your nerve studies? And how thorough were they? Also the diagnosis of optic neuritis is made by Visual Evoked Potentials, not MRI. If you have not had that, you should.
Have you been tested for Myasthenia Gravis? It can present with a diffuse picture of neuropathy and blurred vision.
The hyperrelexia speaks to upper motor neuron disease., so maybe it isn't you. CIDP is more likely to have absent reflexes. Oh, Well.. I'll keep reading.
Why is it that you do not believe fibro, at least in part? It is a real entity, suffered by 1000's. Is it the nebulousness - the sense that is is just not a satisfying explanation? You have a lot of muscle pain. Have they measured a CK (creatine kinase) or a Muscle-Specific CK, or serum aldolase during a bad time?
Have you been seen by a good reputable center - like the Cleveland Clinic?
We'll talk later. Quix
Oh and my symptoms are more sensory than motor....tingling, burning, hot and cold sensations, numb feelings. I also have feelings of water splashing, dripping on me. I'm always looking down on my arms and legs to see if it really water or a paresthesia. I'm so frustrated. No one believes me.
Patsy
Patsy
Thanks Quix for asking. No I haven't had that ruled out as far as I know. My symptoms are pretty bad...numbness, tingling, twitching, muscle pain, blurred vision. When I walk it feels like my legs and brain are not connected and I have to "think'' about walking. These symptoms are present at all times. It does not come and go. I'm different every day. It's always a surprise. It started in 2005 with sudden leg weakness, neck pain, hyperreflexia. I was told it was compressive cervical myelopathy and had a spinal fusion of C5-6. I never believed it was my neck as I had a similar syndrome in 1993, 8 months following 3 bullseye rashes. I got worse after surgery which proved my point that it wasn't my neck. The surgery set it off like a wild fire. I've seen 5 neuro's had numerous tests done to rule out MS.... LP, multiple MRI's of brain and cervical spine, evoked potentials, emg etc.. all normal. They say my neuro exam is normal (it wasn't when I had the hyperreflexia bad). When I walk my legs weaken and my left one drags a bit. It seems to be coming from my butt cheek down the legs. (lumbar MRI normal). I have sore tender areas all over my body esp. ribs, neck, butt cheeks, back. My muscles hurt all over. MRI's have never shown optic neuritis. The only diagnoses I've gotten are CFS/FMS, cervical myelopathy. Did I have lyme?? I don't know but I have never tested positive for it. I clearly had the rash. It's funny you asked about me. I've been reading your posts and wanted to ask how you finally were diagnosed with MS. Do you have lesions? Like you said, there's no way I could read all your posts. Thanks!
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