Aa
Very confused about symptoms
Hi All,
I'll warn at the top of this that I'm very confused about my situation right now, so I might not make that much sense today!
Late last week I saw my neurolgist for a 3-month follow up. I'll spare the details because it would echo so many other testimonies. Suffice it to say that I have opted to schedule no further appointments with him.
I have been told to have my brain MRI repeated every 6 months since the 1st one in Feb '08 was abnormal. But since the repeat in July was unchanged, I'm not sure how urgent I feel additional repeats are. I've been seeing neurologists since Jan and it really seems like a dead end, at least for now.
Last week I also saw a rheumatologist for the 1st time. I've mentioned in other posts that since the change in weather, I've had pronounced joint stiffness and pain, which are not primary neurological symtpoms, so maybe this will lead to understanding my condition.
Of course I asked (again) if this could be Lyme disease (I always come back to that possibility every few months) but she said between the 2 blood tests, the lumbar puncture, and the vast (though temporary) improvement I got from steroids, NO, not Lyme disease. Sigh, I tried.
I did bring her a timeline and list of all of the medications and the test results that I have. While my PCP and neuros never took interest, she felt it was significant that my white cell and c-reactive protein levels were somewhat high in Jan. and July. Next she did an exam and said she noticed some things with my joints. I don't recall it all in detail, but she commented on some of my knuckles being filled in.
She admits she has no idea about the more neurological sounding symptoms. However, between the old blood work, the morning stiffness (which improves with exercise), my experience with steroids, the exam she did, and perhaps other factors I can't recall, she is convinced that I am suffering from some type of inflammation. She's ordered many tests (about 10 vials worth) and I hope to get the results in a week or so.
She also was rather stern with me that my weight loss to date is a good thing, but I really, really need to continue. She said I may be coming down with arthritis (I'm 29, by the way), and if that is the case, I need to lose the weight now.
OK, I know this saga is getting lengthy, but here is some interesting and GOOD news. I stopped taking neurontin late last week. Last time I tried this in Sept, I noticed a quick increase in some of my symptoms like the heavy leg feelings, tingling, burning, etc. But lately, even off of the med, I've been noticing those symptoms LESS! Oct. 22 would have been the SEVEN month mark of constant problems with those symptoms (expect for brief interuptions due to medications, including steroids). I really just thought that I was at my new baseline, but now after all of this time I feel like I may be getting better!
So that leads to the confusion. Feeling better is undeniably awesome. But it seems so bizarre that my neuro-like symptoms are getting better while my rheumatoid symptoms are getting worse! My reflux and mild double vision are pretty much constant. So riddle me this: How can my symptoms display such varying behavior? Some are getting worse, some better, and some the same. The result has me feeling very confused. I'm not sure I'd even want to tell this to my doctors, as I know how nutty it sounds! It would seem VERY unlikely that I have more than 1 condition doing all of these werid things, but my mind is having trouble grasping at the opposite trends in different sets of symptoms if they are in fact from a common cause.
The bottom line is that I am very glad that many of the neuro-like symptoms seem to be showing some improvement after a seven month stretch. I'll try to keep my head screwed on about the confusion with my joints being involved until I get the results from the blood work.
Thanks, I know here I can let out my thoughts on all of this whackniess without being jumped and thrown into a straight jacket!
~W
I'll warn at the top of this that I'm very confused about my situation right now, so I might not make that much sense today!
Late last week I saw my neurolgist for a 3-month follow up. I'll spare the details because it would echo so many other testimonies. Suffice it to say that I have opted to schedule no further appointments with him.
I have been told to have my brain MRI repeated every 6 months since the 1st one in Feb '08 was abnormal. But since the repeat in July was unchanged, I'm not sure how urgent I feel additional repeats are. I've been seeing neurologists since Jan and it really seems like a dead end, at least for now.
Last week I also saw a rheumatologist for the 1st time. I've mentioned in other posts that since the change in weather, I've had pronounced joint stiffness and pain, which are not primary neurological symtpoms, so maybe this will lead to understanding my condition.
Of course I asked (again) if this could be Lyme disease (I always come back to that possibility every few months) but she said between the 2 blood tests, the lumbar puncture, and the vast (though temporary) improvement I got from steroids, NO, not Lyme disease. Sigh, I tried.
I did bring her a timeline and list of all of the medications and the test results that I have. While my PCP and neuros never took interest, she felt it was significant that my white cell and c-reactive protein levels were somewhat high in Jan. and July. Next she did an exam and said she noticed some things with my joints. I don't recall it all in detail, but she commented on some of my knuckles being filled in.
She admits she has no idea about the more neurological sounding symptoms. However, between the old blood work, the morning stiffness (which improves with exercise), my experience with steroids, the exam she did, and perhaps other factors I can't recall, she is convinced that I am suffering from some type of inflammation. She's ordered many tests (about 10 vials worth) and I hope to get the results in a week or so.
She also was rather stern with me that my weight loss to date is a good thing, but I really, really need to continue. She said I may be coming down with arthritis (I'm 29, by the way), and if that is the case, I need to lose the weight now.
OK, I know this saga is getting lengthy, but here is some interesting and GOOD news. I stopped taking neurontin late last week. Last time I tried this in Sept, I noticed a quick increase in some of my symptoms like the heavy leg feelings, tingling, burning, etc. But lately, even off of the med, I've been noticing those symptoms LESS! Oct. 22 would have been the SEVEN month mark of constant problems with those symptoms (expect for brief interuptions due to medications, including steroids). I really just thought that I was at my new baseline, but now after all of this time I feel like I may be getting better!
So that leads to the confusion. Feeling better is undeniably awesome. But it seems so bizarre that my neuro-like symptoms are getting better while my rheumatoid symptoms are getting worse! My reflux and mild double vision are pretty much constant. So riddle me this: How can my symptoms display such varying behavior? Some are getting worse, some better, and some the same. The result has me feeling very confused. I'm not sure I'd even want to tell this to my doctors, as I know how nutty it sounds! It would seem VERY unlikely that I have more than 1 condition doing all of these werid things, but my mind is having trouble grasping at the opposite trends in different sets of symptoms if they are in fact from a common cause.
The bottom line is that I am very glad that many of the neuro-like symptoms seem to be showing some improvement after a seven month stretch. I'll try to keep my head screwed on about the confusion with my joints being involved until I get the results from the blood work.
Thanks, I know here I can let out my thoughts on all of this whackniess without being jumped and thrown into a straight jacket!
~W
Well, I am almost as confused as you. But, there are a few things that I'd like to add to the mix.
The first is my very tired refrain, but it needs repeating. the fact that your MRI has not changed between February and July MEANS NOTHING!!!! There is no rule or sage experience that states that MS must progress along a steady course with mandatory changes on the MRI within a few months! The are times and people in whom the disease may progress fast and others in which it may be static. Your neuromoron is off base in using this as any diagnostic indicator. It neither helps nor hurts the suspicion of MS. There I said it yet again.
I do find it interesting that your more "rheumatologic" symptoms like joint pain and stiffness, and the indictors of inflammation out in the body (like the CRP) are more pronounced now. Many of the the autoimmune inflammatory disorders can cause a vasculitis in the brain. Vasculitis is an inflammation of the small arteries (usually, but can be larger ones, too) that cause those arteries to scar and block the flow of blood, like little strokes. This vasculitis can cause the neurologic symptoms that mimic MS, which is why the autoimmune inflammatory diseases are included as MS imitators.
But, your rheumy is interested and that is more that half the battle to getting diagnosed.
Your repeated experience with Neuronton (gabapentin) is very interesting. I don't understand it, but I believe it.
I'll be thinking (to paraphrase our our GrannyHotWheels)
Quix
The first is my very tired refrain, but it needs repeating. the fact that your MRI has not changed between February and July MEANS NOTHING!!!! There is no rule or sage experience that states that MS must progress along a steady course with mandatory changes on the MRI within a few months! The are times and people in whom the disease may progress fast and others in which it may be static. Your neuromoron is off base in using this as any diagnostic indicator. It neither helps nor hurts the suspicion of MS. There I said it yet again.
I do find it interesting that your more "rheumatologic" symptoms like joint pain and stiffness, and the indictors of inflammation out in the body (like the CRP) are more pronounced now. Many of the the autoimmune inflammatory disorders can cause a vasculitis in the brain. Vasculitis is an inflammation of the small arteries (usually, but can be larger ones, too) that cause those arteries to scar and block the flow of blood, like little strokes. This vasculitis can cause the neurologic symptoms that mimic MS, which is why the autoimmune inflammatory diseases are included as MS imitators.
But, your rheumy is interested and that is more that half the battle to getting diagnosed.
Your repeated experience with Neuronton (gabapentin) is very interesting. I don't understand it, but I believe it.
I'll be thinking (to paraphrase our our GrannyHotWheels)
Quix
Hi there,
I feel better knowing I am not the only one that feels so confused here! But hey that's selfish of me to feel like that. I hope you don't have MS and I do hope you get some answers and are able to resolve your problems, it is great that you are able to go off the neuroton.
As for MS it can be a long and difficult thing to diagnose and different people can have different remissions etc. so I guess they wouldn't be able to rule it out totally yet, but have you ever been tested for Lupus that can cause lots of joint problems and some neurological problems depending on where it manifests itself. (I think), I am not a Dr so please don't take my post as gossip and as far as having several things at once I know that if you have Transverse Mylelitis (which is similar to MS) and causes neurological problems it can be caused sometimes by underlying illnesses like Lupus, so I guess you can have several things, anything is possible.
Glad to hear things are getting better. Good luck with it all,
Sometimes it seems to be a process of elimination..
I feel better knowing I am not the only one that feels so confused here! But hey that's selfish of me to feel like that. I hope you don't have MS and I do hope you get some answers and are able to resolve your problems, it is great that you are able to go off the neuroton.
As for MS it can be a long and difficult thing to diagnose and different people can have different remissions etc. so I guess they wouldn't be able to rule it out totally yet, but have you ever been tested for Lupus that can cause lots of joint problems and some neurological problems depending on where it manifests itself. (I think), I am not a Dr so please don't take my post as gossip and as far as having several things at once I know that if you have Transverse Mylelitis (which is similar to MS) and causes neurological problems it can be caused sometimes by underlying illnesses like Lupus, so I guess you can have several things, anything is possible.
Glad to hear things are getting better. Good luck with it all,
Sometimes it seems to be a process of elimination..
Lux2,
You must be taking your role as co-CL quite seriously: 3 times!
I know a combination of problems is possible and I need to be patient.
I wanted to comment that my focus really is away from MS. I started to really doubt it when my MRI in July was unchanged and my LP, also in July, was clear. Also, after about a year, I still have a completely normal neuro exam. The joint involvement now has me convinced that this is something else.
However, the combined knowledge and support here is unparalleled, so you are stuck with me.
I, like most, do believe in cause and effect. So whatever this is, I am still holding out to learn what the cause is. I really would prefer to not get any more tests or go to anymore appts, but whatever is happening with me has been progressing (thankfully, very very slowly!). I worry if I "take a break," I could be hurting myself.
Over the past year, I've been really surprised to learn how undiagnosed conditions affect the lives of people, self included of course. For me, reading testimonials and sharing this experience is an important part of coping with the situation. I also like to imagine one day someone with a condition similar to mine will take some sort of comfort in reading my experiences. And, though I've yet to figure much out, if I DO ever figure out what is going on with me, I would hope that story would also help another person trying to solve their own medical mystery.
Thanks to all, now to go screw my head back in a few turns (durn thing keeps coming loose!)
~w
You must be taking your role as co-CL quite seriously: 3 times!
I know a combination of problems is possible and I need to be patient.
I wanted to comment that my focus really is away from MS. I started to really doubt it when my MRI in July was unchanged and my LP, also in July, was clear. Also, after about a year, I still have a completely normal neuro exam. The joint involvement now has me convinced that this is something else.
However, the combined knowledge and support here is unparalleled, so you are stuck with me.
I, like most, do believe in cause and effect. So whatever this is, I am still holding out to learn what the cause is. I really would prefer to not get any more tests or go to anymore appts, but whatever is happening with me has been progressing (thankfully, very very slowly!). I worry if I "take a break," I could be hurting myself.
Over the past year, I've been really surprised to learn how undiagnosed conditions affect the lives of people, self included of course. For me, reading testimonials and sharing this experience is an important part of coping with the situation. I also like to imagine one day someone with a condition similar to mine will take some sort of comfort in reading my experiences. And, though I've yet to figure much out, if I DO ever figure out what is going on with me, I would hope that story would also help another person trying to solve their own medical mystery.
Thanks to all, now to go screw my head back in a few turns (durn thing keeps coming loose!)
~w
Hi Wonk,
I've read this now three times and still am unsure what to say. I mainly want to let you know I have read it!
It is very possible you have a couple things going on with you. I have a student worker who has Crohn's, Fibromyalgia AND rheumatoid arthritis. How about that triple combination? The weather change reaks havoc with the joint pain of my mom, who has psioratic arthritis and RA. That's another fun combo.
We get so focused on one thing (like dx'ing MS) that we miss the signs of other things going on in our bodies until it slaps us up the side of the head!
I hope the rheumie helps your discomfort.
My best, Lulu
I've read this now three times and still am unsure what to say. I mainly want to let you know I have read it!
It is very possible you have a couple things going on with you. I have a student worker who has Crohn's, Fibromyalgia AND rheumatoid arthritis. How about that triple combination? The weather change reaks havoc with the joint pain of my mom, who has psioratic arthritis and RA. That's another fun combo.
We get so focused on one thing (like dx'ing MS) that we miss the signs of other things going on in our bodies until it slaps us up the side of the head!
I hope the rheumie helps your discomfort.
My best, Lulu
It isn't uncommon to have more than one problem going on at a time, especially autoimmune disorders. I have autoimmune thyroid disease.
I do have a theory, however, about autoimmune diseases. I think that sometimes in the beginning. This doctor that wrote a book about lupus had said that sometimes in the early stages of lupus, it looks like other diseases and vice versa. If it's true with lupus, couldn't it be true with all autoimmune diseases in general? I'm wondering if this is what happens to some people. It may have been that way for me, because it took years to figure out that my problem was not rheumatological, but neurological. It's just a thought. I do think it would be an interesting medical research topic.
Deb
I do have a theory, however, about autoimmune diseases. I think that sometimes in the beginning. This doctor that wrote a book about lupus had said that sometimes in the early stages of lupus, it looks like other diseases and vice versa. If it's true with lupus, couldn't it be true with all autoimmune diseases in general? I'm wondering if this is what happens to some people. It may have been that way for me, because it took years to figure out that my problem was not rheumatological, but neurological. It's just a thought. I do think it would be an interesting medical research topic.
Deb
I'm thinking that its not unheard of to have a couple of conditions at one time.
My body has confused many a doctor! My first arthritis (right little finger) first was seen on X-ray in my early 20s. My ACLs tore doing what other people wouldn't even say "ouch" from. I'll need total knee replacements earlier than most people. I have a couple of old injuries to my spine, that confuse any neurological issues.
I think my being overweight tends to make doctor's think that the lesions in my brain are from high blood pressure, high cholesterol, diabetes, none of which have been an issue. When at my heaviest, my BP was borderline high, I drank Dandelion Root tea, and haven't had a problem with it since.
I think I'm less confused that the doctors, because I've been living in this body for 46 years. I don't have the medical knowledge to put all the pieces together, label "this one from spine injury, "this one from patchy area on thoracic spine that IS a lesion, not an artifact". Now my specialist says my symptoms would be coming from my cervical spine, so I need to convince her to take a 3T MRI of it and the thoracic. One more flare and she just might...
Sorry, wonko, didn't mean to go off on my own tangent. I'm glad that your neurolgical symptoms are calming down, and you could get off of neurontin. It would be wonderful if that was the end. Of course, we remember how the steroids caused a wonderful improvement, then boom! I guess what I'm trying to say, which is harder to do than it is to say, is to try to relax and go with the flow.
Accept arthritis, find a medication that helps reduce the symptoms, and have more input when all those test results come back. If your neuo symptoms act up, try to accept that, too. If they stay gone, then HOORAY, but remember, you're here to stay!
Hmm, I just remembered that my CRP and white count have been elevated several times. Now I'm more interested than ever in your test results. Wobbly and I will be hanging out here, waiting to hear. I really should find a good rheumatologist, too.
I get a little tired of all the doctors, but if I need a team to optimize my quality of life, then so be it!
Wishing you all the best,
Kathy
My body has confused many a doctor! My first arthritis (right little finger) first was seen on X-ray in my early 20s. My ACLs tore doing what other people wouldn't even say "ouch" from. I'll need total knee replacements earlier than most people. I have a couple of old injuries to my spine, that confuse any neurological issues.
I think my being overweight tends to make doctor's think that the lesions in my brain are from high blood pressure, high cholesterol, diabetes, none of which have been an issue. When at my heaviest, my BP was borderline high, I drank Dandelion Root tea, and haven't had a problem with it since.
I think I'm less confused that the doctors, because I've been living in this body for 46 years. I don't have the medical knowledge to put all the pieces together, label "this one from spine injury, "this one from patchy area on thoracic spine that IS a lesion, not an artifact". Now my specialist says my symptoms would be coming from my cervical spine, so I need to convince her to take a 3T MRI of it and the thoracic. One more flare and she just might...
Sorry, wonko, didn't mean to go off on my own tangent. I'm glad that your neurolgical symptoms are calming down, and you could get off of neurontin. It would be wonderful if that was the end. Of course, we remember how the steroids caused a wonderful improvement, then boom! I guess what I'm trying to say, which is harder to do than it is to say, is to try to relax and go with the flow.
Accept arthritis, find a medication that helps reduce the symptoms, and have more input when all those test results come back. If your neuo symptoms act up, try to accept that, too. If they stay gone, then HOORAY, but remember, you're here to stay!
Hmm, I just remembered that my CRP and white count have been elevated several times. Now I'm more interested than ever in your test results. Wobbly and I will be hanging out here, waiting to hear. I really should find a good rheumatologist, too.
I get a little tired of all the doctors, but if I need a team to optimize my quality of life, then so be it!
Wishing you all the best,
Kathy
Thanks ya'll. I feel so crazy with all of this. After a year of neuro symptoms, now I'm have all of this pronounced trouble with my joints? What does it mean, will this help figure out what is happening, is this treatable....You get the idea, my head is swimming in a pool of confusion.
Wobster, I didn't know (or recall!) that you also have joint problems. Not that it is good news, but hey, guess I'm not as unique as I thought.
My joint stiffness/pain is very symmetric, and worst in the morning or after being still. Same with my neuro symptoms! The big difference is temp: heat feels good on my joints, but makes me nauseous and tired feeling and also enhances tingling and other paresthesias.
I guess my 8 or so lesions pale in comparison to 20. Most of mine are tiny and none enhance, and in all honesty in all of 2008 the neuros have been of no help so I almost hope the joint problems do lead somewhere?
As far as I know, no neurological condition directly causes joint pain/stiffness. So it seems like something else is going on. I will let ppl know if my blood tests reveal anything.
It's been tough dealing with the joint pain, the change in weather seemed to just make it spike so! And while I above claim I am feeling better, I am stilled wiped out everyday by lunchtime and not happy at all with my concentration and stamina, mental or physical.
I really owe so much to the forum. I know I need to get my butt in gear and work more on my attitude, my diet, being positive. It is just lots to deal with sometimes, and I still feel kinda "deer in headlights" about the joint stuff. This is the only place I know where I don't feel hypersensitive about sharing this stuff. I really do have better things to do than make this up, but sometimes I even have a hard time believing what is happening.
Thanks!
Wobster, I didn't know (or recall!) that you also have joint problems. Not that it is good news, but hey, guess I'm not as unique as I thought.
My joint stiffness/pain is very symmetric, and worst in the morning or after being still. Same with my neuro symptoms! The big difference is temp: heat feels good on my joints, but makes me nauseous and tired feeling and also enhances tingling and other paresthesias.
I guess my 8 or so lesions pale in comparison to 20. Most of mine are tiny and none enhance, and in all honesty in all of 2008 the neuros have been of no help so I almost hope the joint problems do lead somewhere?
As far as I know, no neurological condition directly causes joint pain/stiffness. So it seems like something else is going on. I will let ppl know if my blood tests reveal anything.
It's been tough dealing with the joint pain, the change in weather seemed to just make it spike so! And while I above claim I am feeling better, I am stilled wiped out everyday by lunchtime and not happy at all with my concentration and stamina, mental or physical.
I really owe so much to the forum. I know I need to get my butt in gear and work more on my attitude, my diet, being positive. It is just lots to deal with sometimes, and I still feel kinda "deer in headlights" about the joint stuff. This is the only place I know where I don't feel hypersensitive about sharing this stuff. I really do have better things to do than make this up, but sometimes I even have a hard time believing what is happening.
Thanks!
I know how you feel, I have the same type of situation here...my ANA is positive and CR protein has been high... the two Rheumotogist can't figure out what this is...my joints are sore and I'm on Celebrex for this.... but I also have the neuro symptoms and 20 or so MRI lesions that confuse the Neuros...
symptoms change on and off for a few years now...so I really don't know what to tell you...I have just gone for blood tests again and waiting for the results...??
let us know how things go with the results...I'm curious to what will happen with both of us...ummmm
take it easy and talk later
wobbly
undx
symptoms change on and off for a few years now...so I really don't know what to tell you...I have just gone for blood tests again and waiting for the results...??
let us know how things go with the results...I'm curious to what will happen with both of us...ummmm
take it easy and talk later
wobbly
undx
I cannot speak for everyone, but in my 7 year history with this wackiness my symptoms have always been on their own schedule - some up whilst others down - rinse and repeat.
I don't know if this helps, but mine are definitely neurological in nature and they definitely do their own thing.
Richard
OperaMBA
I don't know if this helps, but mine are definitely neurological in nature and they definitely do their own thing.
Richard
OperaMBA
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