Aa
Re-evaluating My Symptoms
When Sept. rolls around, I will officially be at this DX game for 2 years. I know it's not too long by some standards, but it seems like a lifetime to me. I've excepted the new me. I'm slightly broken. My name fits my body. My right side feels almost normal, but the left, is a different story.
I'm weak. I have no strength. To turn a ice cube tray is a chore for me on certain days. One arm has strength. The other doesn't. I walk with a limp because my left leg, at the ankle, will not bend up fully. I'm short in stature so I usually reach for things while on my tippy toes. My left leg can not hold me no longer. I can not get up on my tippy toes.
I have pins in needles through my left side. Occasionally I get them on my right leg. I get a burning, deep in the muscle. It feels like the burn you get when you exercise the muscle to exhaustion. I feel this in my left arm, left leg, sometimes right leg. So far the only appendage that hasn't been affect that much, is my right arm.
The worse symptom I have is the spasms/spasticity. My muscles feel like they are in constant flexed state. I have the most pain from this. My muscle hurt. The baclofen does help, but it doesn't take it completely away. I feel the spasms all over my body, especially on the left side. My toes will twist over themselves. My arm will want to draw up. If I turn in an odd position for too long, I will pay for it. I wake up in pain. I go to bed in pain.
I have double vision. It comes and goes through out the day. It did go away for weeks at a time, but now I experience everyday. I have developed a left deviated eye. It wonders, inward, outward, upward, whatever it wants to do that day, it does. This symptom comes and goes too. My left upper eyelid droops as well, and my left pupil has a slow constriction reaction to light. These symptoms comes and goes too. I've also developed nystagmus when looking to the far left or right. This occurs (mostly) when looking to the far left.
These are my main symptoms. I have others, but these are the main ones.
My abnormalities on exam are:
Hyper reflexes (one time I had clonus), abnormal gait, slow left eye pupil constriction, left droopy eyelid, left sided weakness. I can't walk a straight line if I tried, I can't get on my tippy toes, I fall over when I close my eyes. I showed a picture of my deviated eye to the opthamologist. I haven't been in since I developed the nystagmus.
I've been checked and re-checked for all mimics, including blood disorders, and rare disease.
The Problem:
4-5 nonspecific lesions in my brain 2-3mm in size, (There was a possible lesion or artifact in my c-spine that showed up. The doctors say that there is nothing there, so it must have been an artifact.) LP, SSEP, was done early on at the beginning of my symptoms when I first began to have problem. This was normal. VEP,BAER, was done last year and was normal. I recently had another EMG to rule out other causes and it was normal. I've never had a 3T MRI. I have a vena cava filter placed in my chest. My vascular surgeon believes it would be fine to have one done. The MS specialist would not do it. I could have the filter removed. I only kept it in there because I wanted a back up because the blood thinner was not working and the doctors didn't know what was wrong with me, or what caused the blood clot in my leg to begin with. I can have it removed, if I want to. (I believe the huge ovarian cyst caused the blood clot, but that's my guess). I'm currently off all blood thinner and I have no clots for more than a year.
Does this look like MS? Can I be DX with this evidence (the gradual increase in symptoms and worsening of symptoms)? What else could it be if all other diseases have been looked at? Any ideas on what to do?
I'm weak. I have no strength. To turn a ice cube tray is a chore for me on certain days. One arm has strength. The other doesn't. I walk with a limp because my left leg, at the ankle, will not bend up fully. I'm short in stature so I usually reach for things while on my tippy toes. My left leg can not hold me no longer. I can not get up on my tippy toes.
I have pins in needles through my left side. Occasionally I get them on my right leg. I get a burning, deep in the muscle. It feels like the burn you get when you exercise the muscle to exhaustion. I feel this in my left arm, left leg, sometimes right leg. So far the only appendage that hasn't been affect that much, is my right arm.
The worse symptom I have is the spasms/spasticity. My muscles feel like they are in constant flexed state. I have the most pain from this. My muscle hurt. The baclofen does help, but it doesn't take it completely away. I feel the spasms all over my body, especially on the left side. My toes will twist over themselves. My arm will want to draw up. If I turn in an odd position for too long, I will pay for it. I wake up in pain. I go to bed in pain.
I have double vision. It comes and goes through out the day. It did go away for weeks at a time, but now I experience everyday. I have developed a left deviated eye. It wonders, inward, outward, upward, whatever it wants to do that day, it does. This symptom comes and goes too. My left upper eyelid droops as well, and my left pupil has a slow constriction reaction to light. These symptoms comes and goes too. I've also developed nystagmus when looking to the far left or right. This occurs (mostly) when looking to the far left.
These are my main symptoms. I have others, but these are the main ones.
My abnormalities on exam are:
Hyper reflexes (one time I had clonus), abnormal gait, slow left eye pupil constriction, left droopy eyelid, left sided weakness. I can't walk a straight line if I tried, I can't get on my tippy toes, I fall over when I close my eyes. I showed a picture of my deviated eye to the opthamologist. I haven't been in since I developed the nystagmus.
I've been checked and re-checked for all mimics, including blood disorders, and rare disease.
The Problem:
4-5 nonspecific lesions in my brain 2-3mm in size, (There was a possible lesion or artifact in my c-spine that showed up. The doctors say that there is nothing there, so it must have been an artifact.) LP, SSEP, was done early on at the beginning of my symptoms when I first began to have problem. This was normal. VEP,BAER, was done last year and was normal. I recently had another EMG to rule out other causes and it was normal. I've never had a 3T MRI. I have a vena cava filter placed in my chest. My vascular surgeon believes it would be fine to have one done. The MS specialist would not do it. I could have the filter removed. I only kept it in there because I wanted a back up because the blood thinner was not working and the doctors didn't know what was wrong with me, or what caused the blood clot in my leg to begin with. I can have it removed, if I want to. (I believe the huge ovarian cyst caused the blood clot, but that's my guess). I'm currently off all blood thinner and I have no clots for more than a year.
Does this look like MS? Can I be DX with this evidence (the gradual increase in symptoms and worsening of symptoms)? What else could it be if all other diseases have been looked at? Any ideas on what to do?
No answers or advice here, but lots of empathy on the long journey you've been on. I had my two-year "anniversary" of my mystery illness in June, and not even a hint of an answer, it feels like. (My rheumy told me yesterday he thinks whatever I got hasn't yet been identified by the medical community. Lovely.)
Hang in there, and I hope you get some definite answers (and treatment that helps!!) soon!
--SM
Hang in there, and I hope you get some definite answers (and treatment that helps!!) soon!
--SM
Wobbly- My local neuro wants me to go back to the CC neuro I went to. I haven't made the appointment yet because I needed to wait until I got my kids schedule for school. I needed to work around that. I'm thinking of getting my vena cava filter pulled so I could get on a 3T MRI. I really think that might be the only way I might get some answers sooner.
Amyloo-Thanks for your input. I wish something would hit a little on me, as far as labs, to point on a different direction, since my evidence is lacking on MS, but I haven't had so much as a elevated lab on anything. The only thing that has came up was I was vitamin D deficient. The mimics have been tested at least 4-5 different occasions (by different neuros) and they tested my LP fluid. Not even one hit.
Udkas- I've been through 3 neuros so far..this is my 4th. My local neuro believes the clinical picture is MS. She will not DX, though unless it is confirmed through the MS specialist at Cleveland Clinic. The lesions that I have are in the white matter but are (according to most neuros) the type of lesions that are nonspecific. They would have to change before they would know the cause. They could be nothing or something...that's what they say, even though I had an MRI back in 1999 that had no lesions. This change doesn't matter to them. My local neuro isn't dismissive at all. She believes it could be MS and the CC neuro believes something is wrong (he won't go as far and say as what). The last time I saw him he thought maybe I could have a new neurological disease that is unDXable but I don't believe this.
Shell- My fight is still here..just running a little thin now a days. With my hubby laid off, I feel selfish to waste our gas money going all the way to Cleveland and most likely returning with no answers. You know what I mean? I'm think this time I'm going to ask for answers from the MS specialist or he needs to refer me to a doctor that can give them to me. I would love to go to NYU but time and money is something I don't have enough of lately.
My question too is do you think I would have a better chance of getting DX if I got that vena cava filter taken out (since the radiologist at CC said that it wasn't approved for the 3T)? My vascular surgeon disagrees. He said that it is approved up to 3T, but I can't get on nothing higher. This is a temporary filter. I can have it removed. I could just have it taken out and there wouldn't be nothing to argue about. If I leave it in too much longer...it will be permanent.
Amyloo-Thanks for your input. I wish something would hit a little on me, as far as labs, to point on a different direction, since my evidence is lacking on MS, but I haven't had so much as a elevated lab on anything. The only thing that has came up was I was vitamin D deficient. The mimics have been tested at least 4-5 different occasions (by different neuros) and they tested my LP fluid. Not even one hit.
Udkas- I've been through 3 neuros so far..this is my 4th. My local neuro believes the clinical picture is MS. She will not DX, though unless it is confirmed through the MS specialist at Cleveland Clinic. The lesions that I have are in the white matter but are (according to most neuros) the type of lesions that are nonspecific. They would have to change before they would know the cause. They could be nothing or something...that's what they say, even though I had an MRI back in 1999 that had no lesions. This change doesn't matter to them. My local neuro isn't dismissive at all. She believes it could be MS and the CC neuro believes something is wrong (he won't go as far and say as what). The last time I saw him he thought maybe I could have a new neurological disease that is unDXable but I don't believe this.
Shell- My fight is still here..just running a little thin now a days. With my hubby laid off, I feel selfish to waste our gas money going all the way to Cleveland and most likely returning with no answers. You know what I mean? I'm think this time I'm going to ask for answers from the MS specialist or he needs to refer me to a doctor that can give them to me. I would love to go to NYU but time and money is something I don't have enough of lately.
My question too is do you think I would have a better chance of getting DX if I got that vena cava filter taken out (since the radiologist at CC said that it wasn't approved for the 3T)? My vascular surgeon disagrees. He said that it is approved up to 3T, but I can't get on nothing higher. This is a temporary filter. I can have it removed. I could just have it taken out and there wouldn't be nothing to argue about. If I leave it in too much longer...it will be permanent.
Hi There SB,
I can feel and hear and understand your frustration. Two years seems like an eternity when you are looking for answers and the disappointment when you know something is wrong and a test comes back normal.
Sorry I am not familiar with your story, but there is so many forum members it is hard to remember everyone, Can you get another opinion, fresh ideas? Has the Neuro given you reasons for your lesions and your symptoms? Does he suspect MS but doesn't have enough evidence? Or is he/she just dismissing you and blowing your symptoms off. Your symptoms sound terrible and you do need an answer.
It seems to be such a hard and difficult process for some to receive a diagnosis ( I know Wobbly ) who responded to your post had a bit of a journey with diagnosis...
Well I know one thing you don't have to be part of the medical profession to understand that you do have something wrong!
I wish I could be of help to you but I have no idea, the only comfort I can offer is that you are not alone, I too have been awaiting a diagnosis and keep going through test after test with normal results.
Hugs, hang in there,
Udkas.
I can feel and hear and understand your frustration. Two years seems like an eternity when you are looking for answers and the disappointment when you know something is wrong and a test comes back normal.
Sorry I am not familiar with your story, but there is so many forum members it is hard to remember everyone, Can you get another opinion, fresh ideas? Has the Neuro given you reasons for your lesions and your symptoms? Does he suspect MS but doesn't have enough evidence? Or is he/she just dismissing you and blowing your symptoms off. Your symptoms sound terrible and you do need an answer.
It seems to be such a hard and difficult process for some to receive a diagnosis ( I know Wobbly ) who responded to your post had a bit of a journey with diagnosis...
Well I know one thing you don't have to be part of the medical profession to understand that you do have something wrong!
I wish I could be of help to you but I have no idea, the only comfort I can offer is that you are not alone, I too have been awaiting a diagnosis and keep going through test after test with normal results.
Hugs, hang in there,
Udkas.
I was diagnosed with MS, but found out I had an underlying Lyme disease infection and am currently treating it. What I did after I was dx with MS, taking Copaxone but still declining, was alot of digging and personal research. I had originally been tested for Lyme and had a couple of positive antibodies, but my neuro just said "probably false positives".
I ended up having a second Lyme western blot done and it was very postive. Labs can be different. Not saying your issue is Lyme, just sharing my own experience. I feel for your frustration. Before I was dx MS, it was Fibro. Before Fibro it was Myofascial Pain Syndrome. Don't give up.
I ended up having a second Lyme western blot done and it was very postive. Labs can be different. Not saying your issue is Lyme, just sharing my own experience. I feel for your frustration. Before I was dx MS, it was Fibro. Before Fibro it was Myofascial Pain Syndrome. Don't give up.
Hey you,
Oh, I know you are bummed out for sure, Miss Slightly-B. I can hear it in your typed words. It has been a long couple yrs and you have been through ALOT in addition to the workup w/the nightmare clot. It's understandable.
When can you go back to the specialist?
You've got a little more fight in you - don't you?
((((hugs)))
shell
Oh, I know you are bummed out for sure, Miss Slightly-B. I can hear it in your typed words. It has been a long couple yrs and you have been through ALOT in addition to the workup w/the nightmare clot. It's understandable.
When can you go back to the specialist?
You've got a little more fight in you - don't you?
((((hugs)))
shell
Hi there, I know exactly how you feel and wish you could get some answers... we will hope that will happen in Sept. Are you seeing a Neuro then, a new one or same one as before?
your symptoms sounds so much like I have, when was your last MRI.. will you be getting another one? Just don't stop looking, I know two years is awhile but I've been there and can tell you too keep on looking for answers... If not one Dr ask to see another.. OK.
let us know any updates..
wobbly
dx
your symptoms sounds so much like I have, when was your last MRI.. will you be getting another one? Just don't stop looking, I know two years is awhile but I've been there and can tell you too keep on looking for answers... If not one Dr ask to see another.. OK.
let us know any updates..
wobbly
dx
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