Symptoms spanning 15 years, never seen a neurologist
Symptoms spanning 15 years, never seen a neurologist
I have recently been seriously considering seeing a neurologist and asking for an MS workup. Over the years as different symptoms have come up, I have seen different doctors who run serology or do an MRI of a joint and say that everything is normal and then put me on antidepressants. I got sick of being brushed off so I stopped trying, but I am getting worse. My symptoms used to come and go but now I have them all the time. Here's a rundown of what I've got going on:
In high school (~1999) I went through a period of about two months where I couldn't walk well. My feet would kick each other and my ankles stayed raw because of it. I started wearing high-top shoes to help protect from hurting myself and it eventually went away.
A few years later (2006) my right hip started hurting. When it was really bad it would radiate across my pelvis and down my leg. Sometimes my whole body would ache. It would hurt so bad that I would cry. I couldn't think about anything, I couldn't work when it was hurting. I went to see a doctor and after doing bloodwork and MRIs of the joint he said that it was all in my head and put me on cymbalta, which made my whole body numb and made me really mean so I came off of it.
Around that time, I started getting really tired all the time. I looked at pictures of myself taken in that time period versus a year previous and I looked horrible. Then in 2008 I got pregnant and felt normal for the first time in a couple of years. Got pregnant again in 2009 and had another wonderful pregnancy. A few months after the second baby was born, my symptoms returned.
As the years went on, I started getting numbness and weakness in my hands. It used to be periodic but now my hands are pretty much always weak. I also drop things or fumble around with things a lot. I have to be super mindful when I am holding something so that I don't accidentally drop it.
About a year ago I started getting pins and needles in my feet. I would wonder if I had been sitting funny because my feet (right moreso than left) would fall asleep. More recently, a couple months ago, my left hand started getting this same type of sensation. It's with me most of the day to some degree. My balance and coordination is starting to get worse now. I bump into things when I'm walking, I stagger into doorways and cabinets.
My cognitive skills started suffering around 2006. I stutter a lot, or I can't find a word I'm looking for when it's a simple word like "hotel" or "blue." I end up having to describe what it is I'm trying to say instead of being able to say it. Sometimes I have trouble processing what people say and have to have them repeat themselves or describe it a different way. I am a highly intelligent person so this symptom in particular is incredibly frustrating (for my spouse as well).
I am really twitchy. My muscles will twitch randomly pretty much all the time. This started around 2010. Nothing is repetitive, and the movements aren't ones that I could reproduce. Like, my deltoid will tense up and make my arm move, or a muscle in the side of my neck will jerk and make my head turn. My husband laughs at me if we're sitting together because it's pretty much constant and tbh it is kind of funny.
Earlier this year I started getting patchy goosebumps on my arm and neck.
I have a geographic tongue, have had for years. Not sure if it's relevant but it's always there.
I can't take hot baths. I feel like I'm smothering and my vision starts going dim (more in my right eye). I've been that way since I was a teenager (at least 2002).
I would really appreciate any comments on what I've been going through or just a word of support. I am feeling rather down about having to call off from work every couple of weeks because I am so tired or dizzy I can't get out of bed. My husband is a paragon of support and helps take care of everything that I can't do but I know it's hard for him as well and I hate it that I require so much of him.
Also I haven't called the neurologist yet to set up the appointment. What should I say when I call?
In high school (~1999) I went through a period of about two months where I couldn't walk well. My feet would kick each other and my ankles stayed raw because of it. I started wearing high-top shoes to help protect from hurting myself and it eventually went away.
A few years later (2006) my right hip started hurting. When it was really bad it would radiate across my pelvis and down my leg. Sometimes my whole body would ache. It would hurt so bad that I would cry. I couldn't think about anything, I couldn't work when it was hurting. I went to see a doctor and after doing bloodwork and MRIs of the joint he said that it was all in my head and put me on cymbalta, which made my whole body numb and made me really mean so I came off of it.
Around that time, I started getting really tired all the time. I looked at pictures of myself taken in that time period versus a year previous and I looked horrible. Then in 2008 I got pregnant and felt normal for the first time in a couple of years. Got pregnant again in 2009 and had another wonderful pregnancy. A few months after the second baby was born, my symptoms returned.
As the years went on, I started getting numbness and weakness in my hands. It used to be periodic but now my hands are pretty much always weak. I also drop things or fumble around with things a lot. I have to be super mindful when I am holding something so that I don't accidentally drop it.
About a year ago I started getting pins and needles in my feet. I would wonder if I had been sitting funny because my feet (right moreso than left) would fall asleep. More recently, a couple months ago, my left hand started getting this same type of sensation. It's with me most of the day to some degree. My balance and coordination is starting to get worse now. I bump into things when I'm walking, I stagger into doorways and cabinets.
My cognitive skills started suffering around 2006. I stutter a lot, or I can't find a word I'm looking for when it's a simple word like "hotel" or "blue." I end up having to describe what it is I'm trying to say instead of being able to say it. Sometimes I have trouble processing what people say and have to have them repeat themselves or describe it a different way. I am a highly intelligent person so this symptom in particular is incredibly frustrating (for my spouse as well).
I am really twitchy. My muscles will twitch randomly pretty much all the time. This started around 2010. Nothing is repetitive, and the movements aren't ones that I could reproduce. Like, my deltoid will tense up and make my arm move, or a muscle in the side of my neck will jerk and make my head turn. My husband laughs at me if we're sitting together because it's pretty much constant and tbh it is kind of funny.
Earlier this year I started getting patchy goosebumps on my arm and neck.
I have a geographic tongue, have had for years. Not sure if it's relevant but it's always there.
I can't take hot baths. I feel like I'm smothering and my vision starts going dim (more in my right eye). I've been that way since I was a teenager (at least 2002).
I would really appreciate any comments on what I've been going through or just a word of support. I am feeling rather down about having to call off from work every couple of weeks because I am so tired or dizzy I can't get out of bed. My husband is a paragon of support and helps take care of everything that I can't do but I know it's hard for him as well and I hate it that I require so much of him.
Also I haven't called the neurologist yet to set up the appointment. What should I say when I call?
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Re: Symptoms spanning 15 years, never seen a neurologist
Welcome to ThisIsMS, Pseudonym.Pseudonym wrote:I would really appreciate any comments on what I've been going through or just a word of support. I am feeling rather down about having to call off from work every couple of weeks because I am so tired or dizzy I can't get out of bed. My husband is a paragon of support and helps take care of everything that I can't do but I know it's hard for him as well and I hate it that I require so much of him.
Also I haven't called the neurologist yet to set up the appointment. What should I say when I call?
Since you are undiagnosed, it makes sense to me to start with a good GP or internist who is compassionate and enjoys being a "disease detective." In my opinion, if you see a specialist at the very beginning about a problem, he will find a solution only in his specialty; if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize."
The symptoms you describe are consistent with many different conditions. A GP can order the tests necessary to rule out some non-MS possibilities; there is no definitive test for MS. If you and your physician have not already started your investigation, start with your symptoms list and timeline, a thorough physical baseline examination, and blood tests, especially with testing for a vitamin B12 deficiency (as recommended in this link from the University of Chicago description of a neurological exam: http://peripheralneuropathycenter.uchic ... #bloodtest\
I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.). These authors believe that the standard range at US labs for the serum B12 test is outdated and set too low; they suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms: http://b12awareness.org/could-it-be-b12 ... diagnoses/
Please read the B12 Awareness website thoroughly and watch the videos on their home page – there is lots of good information there! Since your symptoms are consistent with a vitamin B12 deficiency, I think this is the place to start. If you are found to have a deficiency, treatment is easy and inexpensive; if caught early, symptoms are usually reversible.
We wish you all the best; please let us know how it goes with you.
Re: Symptoms spanning 15 years, never seen a neurologist
Thanks for your insight. I have seen a lot of people on this forum told that they need to get their B12 checked. I am sure that's a good idea, and probably where many people's symptoms come from. However, I know that my B12 has been above normal since the beginning, and I take B12 supplements daily to try to help with the fatigue.lyndacarol wrote:Since your symptoms are consistent with a vitamin B12 deficiency, I think this is the place to start. If you are found to have a deficiency, treatment is easy and inexpensive; if caught early, symptoms are usually reversible.
We wish you all the best; please let us know how it goes with you.
I called today and made an appointment with a neurologist in January.
I disagree with this:
I have seen several GP's over the years and been tested for many different deficiencies, and everything came back normal according to them. They found no problem and no solution except to put me on antidepression medicine. I work in eye care. If someone comes in with visual complaints, that doesn't mean that we will be able to make a diagnosis. We may have to refer the patient to another specialist if all of our tests come up negative. I would say that the same is true for a neurologist. If they can't figure out what's wrong with me, then I will go elsewhere.if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize."
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Re: Symptoms spanning 15 years, never seen a neurologist
So when is the last time you had an MRI? Did you ever get an MRI of your brain and or spine with and without contrast?
Do you have any one in your family with MS?
It is hard to help you over the internet... plus I am by no means an expert.
The biggest red flag I see is that your symptoms stopped while being pregnant. I have read many times that happens with MS. That also may be the same for other conditions as well though, I don't know.
Find a good neurologist, one who is an MS specialist if you can. Explain to them your symptoms over the years and they will take it from there. Just make sure it is a doctor who knows enough, and cares enough to explore everything and figure out what is going on with you.
I hope the best for you,
Chris
Do you have any one in your family with MS?
It is hard to help you over the internet... plus I am by no means an expert.
The biggest red flag I see is that your symptoms stopped while being pregnant. I have read many times that happens with MS. That also may be the same for other conditions as well though, I don't know.
Find a good neurologist, one who is an MS specialist if you can. Explain to them your symptoms over the years and they will take it from there. Just make sure it is a doctor who knows enough, and cares enough to explore everything and figure out what is going on with you.
I hope the best for you,
Chris
Re: Symptoms spanning 15 years, never seen a neurologist
My last MRI was before my kids, so around 2006-2007. I've never had an MRI of my brain or spine. Never had contrast either.Youarethecure wrote:So when is the last time you had an MRI? Did you ever get an MRI of your brain and or spine with and without contrast?
Do you have any one in your family with MS?
It is hard to help you over the internet... plus I am by no means an expert.
The biggest red flag I see is that your symptoms stopped while being pregnant. I have read many times that happens with MS. That also may be the same for other conditions as well though, I don't know.
Find a good neurologist, one who is an MS specialist if you can. Explain to them your symptoms over the years and they will take it from there. Just make sure it is a doctor who knows enough, and cares enough to explore everything and figure out what is going on with you.
I hope the best for you,
Chris
I don't think anyone in my family has MS, but I don't know most of my mother's side of the family. Does it tend to occur more often with family history?
Thanks a bunch for your reply
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Re: Symptoms spanning 15 years, never seen a neurologist
It very much so tends to occur within the same families.That is one of the main questions when looking into possible MS symptoms. They do not know how or what but MS is thought to be genetic along with environmental factors.
So what did you get an MRI for if it wasn't your brain or spine? Was anyone ever looking into possible MS or something similar?
There could be many different reasons and causes for what you are going through. A good neurologist will get to the bottom of it, trust me.
In my opinion (which isn't worth a thing lol) you should get an MRI of your brain and spine. A good neurologist would hear your story and symptoms and should say the same thing. But again, what do I know.
Are you familiar with MS? Just know that it is not the end of the world. There are many different things we can do to fight back against MS. It is very scary to hear it at first, but once you learn everything about MS you will see it is more than doable. Honestly, it is not like it used to be. The knowledge about MS has only grown and grown over the years. Catching it early and making proper changes can truly impact the disease and our quality of life.
So what did you get an MRI for if it wasn't your brain or spine? Was anyone ever looking into possible MS or something similar?
There could be many different reasons and causes for what you are going through. A good neurologist will get to the bottom of it, trust me.
In my opinion (which isn't worth a thing lol) you should get an MRI of your brain and spine. A good neurologist would hear your story and symptoms and should say the same thing. But again, what do I know.
Are you familiar with MS? Just know that it is not the end of the world. There are many different things we can do to fight back against MS. It is very scary to hear it at first, but once you learn everything about MS you will see it is more than doable. Honestly, it is not like it used to be. The knowledge about MS has only grown and grown over the years. Catching it early and making proper changes can truly impact the disease and our quality of life.
Re: Symptoms spanning 15 years, never seen a neurologist
No one has looked into it possibly being neurological. I've never gone to a doctor and laid it all down on the line for them. Over the years, as new symptoms have come up, I have gone to doctors about them. When I went in high school for my walking problems, I was sent to a podiatrist who put me in prescription orthotics. When I went for hip pain, I got an MRI of my pelvis and bloodwork. When I asked my gynecologist a few months after having a baby about my symptoms returning, she said "Welcome to Motherhood." When I went last year about the fatigue, I had more bloodwork done and was told everything was normal.Youarethecure wrote:It very much so tends to occur within the same families.That is one of the main questions when looking into possible MS symptoms. They do not know how or what but MS is thought to be genetic along with environmental factors.
So what did you get an MRI for if it wasn't your brain or spine? Was anyone ever looking into possible MS or something similar?
There could be many different reasons and causes for what you are going through. A good neurologist will get to the bottom of it, trust me.
In my opinion (which isn't worth a thing lol) you should get an MRI of your brain and spine. A good neurologist would hear your story and symptoms and should say the same thing. But again, what do I know.
Are you familiar with MS? Just know that it is not the end of the world. There are many different things we can do to fight back against MS. It is very scary to hear it at first, but once you learn everything about MS you will see it is more than doable. Honestly, it is not like it used to be. The knowledge about MS has only grown and grown over the years. Catching it early and making proper changes can truly impact the disease and our quality of life.
Honestly I'm not scared about possibly having MS. I already know that there is something going on, that has been with me for at least 15 years, and is getting worse. I need some kind of diagnosis so that I can get treatment. I feel like my health is declining exponentially without treatment and I just want to figure out what's wrong with me so that I can hopefully feel better and/or stop getting worse.
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Re: Symptoms spanning 15 years, never seen a neurologist
Do you feel like your symptoms have only been getting a little worse and worse? Or do you feel like they hit and then get better?
Look up the differences between relapse remitting MS and secondary progressive MS. There is also primary progressive MS. Relapse remitting shows signs and symptoms but can get better or at least level off. After so many years of RRMS people tend go into secondary progressive. There are no more "flare ups" but symptoms start and gradually get worse and worse.
I don't know if I missed it, but how old are you?
I am glad to see you wont be scared and are more interested in just getting answers. It is upsetting that these types of things happen far too often in our medical world. Doctors are so quick to dismiss someone when they clearly are having neurological (invisible) symptoms.
You have a very realistic outlook in all this and I applaud your attitude. Again though, this could be many different things that could be causing your problems.
Look up the differences between relapse remitting MS and secondary progressive MS. There is also primary progressive MS. Relapse remitting shows signs and symptoms but can get better or at least level off. After so many years of RRMS people tend go into secondary progressive. There are no more "flare ups" but symptoms start and gradually get worse and worse.
I don't know if I missed it, but how old are you?
I am glad to see you wont be scared and are more interested in just getting answers. It is upsetting that these types of things happen far too often in our medical world. Doctors are so quick to dismiss someone when they clearly are having neurological (invisible) symptoms.
You have a very realistic outlook in all this and I applaud your attitude. Again though, this could be many different things that could be causing your problems.
Re: Symptoms spanning 15 years, never seen a neurologist
Thanks so much! I really appreciate you taking the time to talk to me.Youarethecure wrote:Do you feel like your symptoms have only been getting a little worse and worse? Or do you feel like they hit and then get better?
Look up the differences between relapse remitting MS and secondary progressive MS. There is also primary progressive MS. Relapse remitting shows signs and symptoms but can get better or at least level off. After so many years of RRMS people tend go into secondary progressive. There are no more "flare ups" but symptoms start and gradually get worse and worse.
I don't know if I missed it, but how old are you?
I am glad to see you wont be scared and are more interested in just getting answers. It is upsetting that these types of things happen far too often in our medical world. Doctors are so quick to dismiss someone when they clearly are having neurological (invisible) symptoms.
You have a very realistic outlook in all this and I applaud your attitude. Again though, this could be many different things that could be causing your problems.
At first (between the ages of 14 and 27 or so) my symptoms came and went. I would go weeks or months feeling fine, and then something would happen that would stay with me for a while before going away. For the past two years, I feel like I am just slowly and steadily getting worse. No real days where I feel normal anymore (though some days are still better than others). I'm 29 now.
I think one of the things working to my detriment when I went to the doctor before was A) I'm female and B) I was young. I feel like doctors don't really take young females seriously for some reason. They all seem to think we're hypochondriacs. I have run into several people in the past week who see the neurologist that I got an appointment with and they all sing her praises, though, and assure me that she will get to the bottom of whatever it is that's causing my symptoms. Two of them have MS so they asked me about my symptoms and nodded all too knowingly. They gave me information about what treatment was like for them and what their life is like. I'm pretty convinced that I have it at this point, but if it's something else I won't get my feelings hurt. I just want to know what it is so that I can move on with my life and stop worrying about it.
While I'm not scared of this possibly being MS, I am scared of not figuring out what it is. I feel like if someone had just followed through and figured me out a few years ago, I wouldn't be where I am today, and I'm afraid that I'm going to have to live with whatever damage has been done in the meantime for the rest of my life.
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Re: Symptoms spanning 15 years, never seen a neurologist
That is great to hear about the neurologist.
Again, many things can cause these symptoms but I can relate to many of the things you describe.... very well too.
It seems like you have a good neurologist that will figure this out, hopefully that relieves at least a little stress for you. That is step one in whatever it is.
If it is MS there are many things you can do in regards to diet, medication, exercising, nutrition, and your lifestyle that will help you. There is a lot that can be learned about MS. I was only diagnosed early this year my self. I am only 25 and male. It is crazy scary and weird at first but it is what it is. We have to accept it, we have no choice.
I do everything possible that I have control over to hopefully slow it down. Whether it all works or not, it still feels good knowing I am doing my part. We have every right in the world to be angry, upset or scared but what is that going to do for anyone?..... Don't get me wrong though I have my angry hate the world days every now and then haha.
Again, many things can cause these symptoms but I can relate to many of the things you describe.... very well too.
It seems like you have a good neurologist that will figure this out, hopefully that relieves at least a little stress for you. That is step one in whatever it is.
If it is MS there are many things you can do in regards to diet, medication, exercising, nutrition, and your lifestyle that will help you. There is a lot that can be learned about MS. I was only diagnosed early this year my self. I am only 25 and male. It is crazy scary and weird at first but it is what it is. We have to accept it, we have no choice.
I do everything possible that I have control over to hopefully slow it down. Whether it all works or not, it still feels good knowing I am doing my part. We have every right in the world to be angry, upset or scared but what is that going to do for anyone?..... Don't get me wrong though I have my angry hate the world days every now and then haha.
Re: Symptoms spanning 15 years, never seen a neurologist
I'm going to the neurologist for the first time tomorrow morning! I am super nervous. I've been journaling my symptoms for the last several weeks and right now I'm writing out the timeline that I posted here so that I can present it to her. Cross your fingers for me please!
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Re: Symptoms spanning 15 years, never seen a neurologist
So what happened at the appointment? I hope you are doing well with whatever has happened.
Re: Symptoms spanning 15 years, never seen a neurologist
It went so well compared to my past experiences with doctors. She ordered an EEG for that day and a bunch of labs:Youarethecure wrote:So what happened at the appointment? I hope you are doing well with whatever has happened.
TSH
T3
TPO
Comprehensive Metabolic Panel
Vitamin D
Cyanocobalamin (B-12)
CBC
And they are working on getting approval for me to have an MRI with my insurance. I'm just waiting for them to call back to get it scheduled.
She did tests of my coordination, balance and memory. My memory was OK (and I don't have trouble with my memory, but processing information and speaking is hard sometimes). My coordination was slightly impaired according to her report (mild dysmetria on the left side) and I had truncal ataxia and a positive Romberg (though I don't know how much weight I give that because I can't keep my balance with my eyes open so I don't know how I'm supposed to do it with them closed).
I felt like she really listened to me and understood that this was something I'd been dealing with unsuccessfully for a long time. She was sympathetic to me wanting to do what we could do as soon as possible and they did everything they could that day, just having to wait on the MRI because of my insurance. I go back on 2/9 for a follow-up to discuss the results of all the testing.
One crazy thing that happened - I was telling her that in my quest to find an answer I had had my thyroid checked last year and my TSH was 3.12. The doctor also checked my vitamin D at that time and it was 11. My neuro looked at me like WHAAT?? She asked what they did about it and I said they told me to pick up some vitamin D at the pharmacy. She asked if they had scheduled a follow-up, they hadn't. She said I should have been put on prescription medicine and definitely followed up on with a number that low, and that she likes vitamin D to be around 50. I was a little shocked and also pissed at the doctor that brushed me off with a number that was so obviously way too low. But what else is new?? lol
Thank you so much for checking on me! I hope it doesn't take too long to figure me out.
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