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Might I have MS?
Recently, I have been doing some research on MS and other Neurological diseases to try and determine what some re-occurring symptoms I've had for a few years now might be. Originally, I thought it might have been seizures, but, upon researching MS, the symptoms look more like that than anything else. I have read numerous articles and watched many informational videos about the symptoms and realize that I have a lot of the symptoms described. Might I have MS?
I get things like:
-Blurred vision, eye pain, Double Vision
-Muscle weakness - partial or mild paralysis
-Slurred speech and related speech problems
-Involuntary contraction of muscles
-Problems with posture
-Jerking and twitching muscles
-Involuntary Leg Movements, especially bothersome at night
-Foot drags along floor during walking
-Partial numbness, tingling, buzzing and vibration sensations
-Complete numbness/loss of sensation
-Pain without apparent cause, burning, itching and electrical shock sensations/ back pains
-Electric shocks and buzzing sensations when moving head
-Facial pain
-Loss of coordination
-Shaking when performing fine movements
-Nausea/vomiting/sensitivity to travel sickness
-Problems coordinating speech, stuttering
-Constipation
-Short-term and long-term memory problems, forgetfulness, slow word recall
-Mood swings
-Anxiety
-Fatigue
-Increase in severity of symptoms with heat/cold
-Acid reflux
-Epileptic seizures
-Swallowing problems
-Respiratory problems
- Inappropriately cold body parts
-Autonomic nervous system problems
I get things like:
-Blurred vision, eye pain, Double Vision
-Muscle weakness - partial or mild paralysis
-Slurred speech and related speech problems
-Involuntary contraction of muscles
-Problems with posture
-Jerking and twitching muscles
-Involuntary Leg Movements, especially bothersome at night
-Foot drags along floor during walking
-Partial numbness, tingling, buzzing and vibration sensations
-Complete numbness/loss of sensation
-Pain without apparent cause, burning, itching and electrical shock sensations/ back pains
-Electric shocks and buzzing sensations when moving head
-Facial pain
-Loss of coordination
-Shaking when performing fine movements
-Nausea/vomiting/sensitivity to travel sickness
-Problems coordinating speech, stuttering
-Constipation
-Short-term and long-term memory problems, forgetfulness, slow word recall
-Mood swings
-Anxiety
-Fatigue
-Increase in severity of symptoms with heat/cold
-Acid reflux
-Epileptic seizures
-Swallowing problems
-Respiratory problems
- Inappropriately cold body parts
-Autonomic nervous system problems
See, here is a great example: "Fainting for no reason after a sudden burst of weakness, and when you come to, you cant open your eyes or see despite people telling you to look at them" That symptom can be associated with many things, but to me, it sounds less like syncope (fainting.) The inability to respond to commands after fainting should make a heath care professional think seizure with postictal state. That altered state of consciousness is a very big deal.
This forum is "staffed" by people with MS and people in Limboland that may have MS. While there are doctors and other knowledgeable people on this forum, this is not the MS Expert Forum where you ask the doctor. That is: http://www.medhelp.org/forums/Multiple-Sclerosis-MS/show/322?camp=msc
Some of us have tried to provide you with a bit of insight on dealing with the Heath Care System in the US. No one is saying you can't do research. We all did. What we can say is that most doctors don't accept the patients research. They have the process that they were taught in medical school and their residencies. They also have to deal with more than just your diagnosis. There are no shortcuts. If you have the symptoms, there are all the first line labs like SMA-24, CBC, ANA, CRP, ESR, Lyme Titer, EBV Titer, STS, HIV, etc. Doctors have to be able to show that you do not have a mimic of MS. They have to make sure that there is enough documentation of the clinical signs (not symptoms) for the insurance companies (or state entities - like Medicare.)
I'm sure that in your research you found that the fact that your grandmother and mother may have had MS increases your chances only slightly. Even in identical twins, the chances of both twins having MS is only about 33%. The chances of a child having MS with one parent with MS is in the 1%-3% range. The incidence of MS in the general population is about 0.1%
Good hunting. Start with a Neuro. You should at least get to a doctor so they can start treating your symptoms. The actual diagnosis may take much longer. There are folks here that were diagnosed in weeks and there are some that are still working on a diagnosis after years.
Bob
This forum is "staffed" by people with MS and people in Limboland that may have MS. While there are doctors and other knowledgeable people on this forum, this is not the MS Expert Forum where you ask the doctor. That is: http://www.medhelp.org/forums/Multiple-Sclerosis-MS/show/322?camp=msc
Some of us have tried to provide you with a bit of insight on dealing with the Heath Care System in the US. No one is saying you can't do research. We all did. What we can say is that most doctors don't accept the patients research. They have the process that they were taught in medical school and their residencies. They also have to deal with more than just your diagnosis. There are no shortcuts. If you have the symptoms, there are all the first line labs like SMA-24, CBC, ANA, CRP, ESR, Lyme Titer, EBV Titer, STS, HIV, etc. Doctors have to be able to show that you do not have a mimic of MS. They have to make sure that there is enough documentation of the clinical signs (not symptoms) for the insurance companies (or state entities - like Medicare.)
I'm sure that in your research you found that the fact that your grandmother and mother may have had MS increases your chances only slightly. Even in identical twins, the chances of both twins having MS is only about 33%. The chances of a child having MS with one parent with MS is in the 1%-3% range. The incidence of MS in the general population is about 0.1%
Good hunting. Start with a Neuro. You should at least get to a doctor so they can start treating your symptoms. The actual diagnosis may take much longer. There are folks here that were diagnosed in weeks and there are some that are still working on a diagnosis after years.
Bob
It is a doctors job to help the patient figure out what is wrong with them, if writing down symptoms that the patient is having is more beneficial to the patient, the doctor should accept that and try to help them despite the list. After all the patient probably wrote it down because they may have a hard time explaining what they are experiencing.
It's not a thing of "walking in to the doctors with a laundry list of symptoms" and I am not saying that the internet says I have MS. I am not going off of my research alone- the symptoms I have had started when I was a child, and I have been to the hospital many times for things that the doctors have no clue what was wrong, and that I'm fine when I come to, but whatever caused me to land there was not a subtle-
In Example: Fainting for no reason after a sudden burst of weakness, and when you come to, you cant open your eyes or see despite people telling you to look at them, and not being able to walk and having it very hard to talk. Yet when you get to the hospital and they examine you they can't find a reason for it happening. And this happens again and again over the years in different places(geological), and more and more things start going wrong, and you always have someone telling you they don't know why this happened. It's frustrating not knowing what is wrong, but you know it is something.
I am not saying I have MS- I don't know and I really came onto this forum because I thought it was a site with actual doctors on it to talk to- I wanted a professionals opinion before making the debt of going to a doctor/neurologist for diagnosis.
It's not a thing of "walking in to the doctors with a laundry list of symptoms" and I am not saying that the internet says I have MS. I am not going off of my research alone- the symptoms I have had started when I was a child, and I have been to the hospital many times for things that the doctors have no clue what was wrong, and that I'm fine when I come to, but whatever caused me to land there was not a subtle-
In Example: Fainting for no reason after a sudden burst of weakness, and when you come to, you cant open your eyes or see despite people telling you to look at them, and not being able to walk and having it very hard to talk. Yet when you get to the hospital and they examine you they can't find a reason for it happening. And this happens again and again over the years in different places(geological), and more and more things start going wrong, and you always have someone telling you they don't know why this happened. It's frustrating not knowing what is wrong, but you know it is something.
I am not saying I have MS- I don't know and I really came onto this forum because I thought it was a site with actual doctors on it to talk to- I wanted a professionals opinion before making the debt of going to a doctor/neurologist for diagnosis.
Most of the people on this forum have beat more than a few doctors into submission. The problem is that many people do internet research based on subjective symptoms without the objective signs. Diagnostics is much more than just a list a symptoms into Google and out pops a diagnosis. There really isn't much to cut out of the diagnostic process, since everything else needs to be excluded to diagnose MS.
Neurologic diseases and MS in particular can take months or even years to diagnose. I guess I can understand the frustration of doctors when a patient walks in with a laundry list of symptoms with varying degrees of severity and says "The internet says I may have MS." That is really counterproductive. Even if it is MS, you still have to rule out about 70+ disease mimics.
Most of us have discovered that if we walk in and say "these are my major complaints.," the doctors will ask more questions and interact. If they don't, most of us move on to another doctor. MS is not like a seizure disorder with clear-cut demonstrable clinical signs. PwMS have symptoms....the signs can be elusive. Lesions on an MRI, antibodies in CSF, abnormal VEPs and all that has to happen with tests for a bunch of other diseases being normal. There is no test or set of tests that prove someone has MS.
I don't think anyone really give all the decision making power to their doctors, but this is more complicated than most decisions. This is more a case of probability of MS. The definitive diagnosis comes at autopsy. So if it seems we are giving you "kind of" and "maybe" answers, that is the best you get with MS. When I relapse. it makes it stronger in my mind, that yes, I have MS. When I die, they can cut my brain apart and prove it, but not until then.
Bob
Neurologic diseases and MS in particular can take months or even years to diagnose. I guess I can understand the frustration of doctors when a patient walks in with a laundry list of symptoms with varying degrees of severity and says "The internet says I may have MS." That is really counterproductive. Even if it is MS, you still have to rule out about 70+ disease mimics.
Most of us have discovered that if we walk in and say "these are my major complaints.," the doctors will ask more questions and interact. If they don't, most of us move on to another doctor. MS is not like a seizure disorder with clear-cut demonstrable clinical signs. PwMS have symptoms....the signs can be elusive. Lesions on an MRI, antibodies in CSF, abnormal VEPs and all that has to happen with tests for a bunch of other diseases being normal. There is no test or set of tests that prove someone has MS.
I don't think anyone really give all the decision making power to their doctors, but this is more complicated than most decisions. This is more a case of probability of MS. The definitive diagnosis comes at autopsy. So if it seems we are giving you "kind of" and "maybe" answers, that is the best you get with MS. When I relapse. it makes it stronger in my mind, that yes, I have MS. When I die, they can cut my brain apart and prove it, but not until then.
Bob
I realize what you meant- I know that any doctor will clam up when you say that you have been doing research. The thing that bothers me is most people let their doctors have all the decisions and not themselves (in general) when it comes to what needs to be done. Research, I think, prevents a lot of unnecessary procedures that a person might have to go through in trying to find out what is wrong with them- I do so because I have had doctors really mess up on my health when I just let them so what they think is best instead of knowing what many thing it possibly could be. I realize any road in life is hard, especially when you don't know what is wrong- thank you for the reply.
I meant no disrespect on your post, I was just reflecting on how doctors have reacted in the past to me and others who proclaim research. We are a goo forum and you are welcome to voice your opinions in any way you want. I wish you the best in your search for a Dx but will admit it will not be an easy road
Honestly, I don't care whether people will frown on my research, if they do, they are saying not to be open-minded and do not try to figure out what might possibly be happening to me. While I am not self- diagnosing myself, I do know what is wrong with my body more than any physician ever can because i am in it, and the best way to know your symptoms to even begin to seek help for what might be wrong, is to study it.
Yeah, they clam up when you mention you've been doing resarch.......but all are right, its a procss of elimination. I see some restless leg symptoms listed in your list.......someone posted earlier the description of flares, which would be good reading for you, I just can't remember where I saw it.......it was on our forum.........good luck and bring lots of patience with you to the primary!
For some very good reasons, they frown on trying to self-diagnose through internet research! So while it may be that you're having neurological symptoms, the best thing is to start the process with your PCP. Talk about your symptoms, give him/her a timeline of when they started and whether they go away, and don't mention that you spend a lot of time on the internet looking up diseases!
I went to my PCP with a tingling chin. I got the results of my MRI and started doing research. When I met with the neuro and started talking about possible diagnoses, I didn't talk about the internet research, but when he mentioned MS, I wasn't taken by surprise.
I went to my PCP with a tingling chin. I got the results of my MRI and started doing research. When I met with the neuro and started talking about possible diagnoses, I didn't talk about the internet research, but when he mentioned MS, I wasn't taken by surprise.
Thanks for the reply- I have researched a ton of other possible diseases over the years, and other possible causes for certain symptoms, but nothing really explained some of the weird symptoms of (whatever is wrong with me)- and I have a family history of MS- my grandmother had it and I think my mother had it.
Welcome to the forum.
The quick answer is that you might and you might not. MS is a disease of the central nervous system and is a diagnosis of exclusion. Things typically start with a discussion with your Primary Care Doctor. Very few people have all of those symptoms at a young age. I'm almost 50 and only have about 6 of those symptoms.
There is a list of mimics for MS that is very long and they all have to be ruled out, so that process starts with a complete neuro exam, blood tests and typically an MRI of the brain and c-spine. Depending where you live, there are several diseases that may be more likely than MS that are known mimics. In the Northern US and the East Coast, an active 21 year old could very likely be exposed to Lyme's disease. Most of these symptoms can also be brought on by anxiety and stress.
So you should consider discussing this with your PCP and see if he/she thinks this is an issue and where the testing should start.
Bob
The quick answer is that you might and you might not. MS is a disease of the central nervous system and is a diagnosis of exclusion. Things typically start with a discussion with your Primary Care Doctor. Very few people have all of those symptoms at a young age. I'm almost 50 and only have about 6 of those symptoms.
There is a list of mimics for MS that is very long and they all have to be ruled out, so that process starts with a complete neuro exam, blood tests and typically an MRI of the brain and c-spine. Depending where you live, there are several diseases that may be more likely than MS that are known mimics. In the Northern US and the East Coast, an active 21 year old could very likely be exposed to Lyme's disease. Most of these symptoms can also be brought on by anxiety and stress.
So you should consider discussing this with your PCP and see if he/she thinks this is an issue and where the testing should start.
Bob
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