Aa
Possibly MS
I recently had an MRI of the head w/contrast and my primary care doctor said it was negative, I have been going through hell fot the past 2 months trying to figure out what is going on with me. It started with burning in my hands and feet-that went to tingling and numbness. Extremely cold hands and feet. I was sick at the same time with Bronchitis/plurisy/ottis media. I started having chest pain and SOB. I went to ER and they did chest X-Ray and said I still had Pleurisy. Symptoms persisted and the Doc I work for said see Lung Specialist, He did multiple tests and didn't find any lung disease.
He said it was possible that I had Pericarditis. He said to treat it with motrin. After i got the echocardiogram back it showed a LVF of 50% and some mitral valve regurgitation. I didn't think this was normal so I did see cardiologist or his nurse practitioner and she said my blood pressure was good and my exam went well. She recommended seeing a Neurologist because of the symptoms I described. Feeling numb and leg weakness, thats a big problem, some days I feel I can hardly walk
or get out of bed to even function. Back pain, In the past two months my symptoms have also been severe lack of concentration, memory loss from one day to next. lack of balance. burning in urine and pins and needles in back. blurred vision etc. I also had bone scan that said it showed someting in the L4 likely degenerative in nature. Is this something I should look into with all these other symptoms?
He said it was possible that I had Pericarditis. He said to treat it with motrin. After i got the echocardiogram back it showed a LVF of 50% and some mitral valve regurgitation. I didn't think this was normal so I did see cardiologist or his nurse practitioner and she said my blood pressure was good and my exam went well. She recommended seeing a Neurologist because of the symptoms I described. Feeling numb and leg weakness, thats a big problem, some days I feel I can hardly walk
or get out of bed to even function. Back pain, In the past two months my symptoms have also been severe lack of concentration, memory loss from one day to next. lack of balance. burning in urine and pins and needles in back. blurred vision etc. I also had bone scan that said it showed someting in the L4 likely degenerative in nature. Is this something I should look into with all these other symptoms?
Anita...I think if you asked everyone on this forum about self doubt, family doubt, physician doubt...I think just about all of us has been there. It is aggravating, frustrating and depressing but we can overcome it all!!!
Being pro-active is an important part of seeking a diagnosis so you have to learn to brush off stupid comments like the one your primary "doctor" made and move on to better physicians that can really help.
I think that you will make it through...after everything you have been through lately...this should be a walk in the park as long as you follow the steps that we have laid out for you. I will be honest, the road to an MS diagnosis can be a long and arduous one and there are a lot of people here that are in what we call limboland...they are sick but not diagnosed...they are in limbo. We can all work together I believe to help these people get the help they need and you can help too. Just pop in here occasionally and tell us how you are making out and by sharing your story you could shed some light on someone else's problem. So don't be shy...we are a great group of people and we are looking forward to getting to know you better!
Lots of Hugs,
Rena
Being pro-active is an important part of seeking a diagnosis so you have to learn to brush off stupid comments like the one your primary "doctor" made and move on to better physicians that can really help.
I think that you will make it through...after everything you have been through lately...this should be a walk in the park as long as you follow the steps that we have laid out for you. I will be honest, the road to an MS diagnosis can be a long and arduous one and there are a lot of people here that are in what we call limboland...they are sick but not diagnosed...they are in limbo. We can all work together I believe to help these people get the help they need and you can help too. Just pop in here occasionally and tell us how you are making out and by sharing your story you could shed some light on someone else's problem. So don't be shy...we are a great group of people and we are looking forward to getting to know you better!
Lots of Hugs,
Rena
Hi Rena! Thanks so much for all of your advice! It means so much!!! I have not seen a neurologist. Today when I talked to my primary doctor she said that I was working myself up. I couldn't believe what I was hearing. I told her my head felt so weird after the MRI I think that the magnetic waves hurt my head and she said no. I can feel the pressure from it. It is not a normal headache. It is this extreme pressure like I can't move my head. It runs down my neck. It wasnt there until I had the MRI of the head. Anyway, I will get a copy of my MRI. I work for a Dr. that can get it for me if they try to keep me from getting it. The way that treated me today I don't think they want me to find anything out. She did ask me If I wanted to see a neurologist? I said yes PLEASE and should I make sure that the Neurologist is an MS specialist? I suspect my symptoms started 7-8 years ago. In the last couple of years it has gotten worse. I will let you know if and when I see the MS specialist and everyday I pray that I can be strong enough to make it through the day for me and my family. Thanks again Rena and thanks for the hugs! You and Ada have made my day! I have some hope again. Anita
Hi! Thanks for the warm welcome,it is nice to have someone listen for a change and not tell me that I'm insane. I don't notice color changes in my hands and feet. What is mottling? Pericarditis is an inflammation around the heart. Fluid is usually present. I have had some bloodwork done but what blood test would rule out sticky blood syndrome? I never heard of it. Yes, the lung specialist did a good job trying to find out what was causing my pain. I'm not being treated for pleurisy. At one point I was on an antibiotic. The pain is less now,it isn't constant like before. It seems the pain has moved to other locations. I do have some eye pain when moving them. I do have an eye appointment and I'm praying that they see something, I know that sounds bad but at this point I just want to know something. If it's bad I can deal with it, this not knowing stuff is making me impatient. Thank god for my mom she just keeps pushing me to keep on going. She is telling me not to let the doctors make me feel like I'm going crazy!
Hi Anita and Welcome to our Forum! I just want to start out by saying that we here on the forum are not able to make any diagnosis but we hope that we can point you in the right direction toward a diagnosis for your symptoms!
Spazie Ada seems to have asked the right questions and that leaves less for me I guess!
I see that you have had an MRI which is a good thing but the first thing I would advise is to get an appointment with an MS Specialist!
Why you ask? While a neurologist can deal with many neurological diseases, if you are suspected of having MS you NEED to be treated by an MS Specialist.
An MS Specialist is trained to study your MRI and has the experience to discern differences in your MRI that a Neurologist or Radiologist is not. This ensures that you will have the proper results at the start of what could be a long road to a diagnosis. Were you able to obtain a copy of your MRI for your own records? This might be something you may want to do so that if you are able to see an MS Specialist, you will have an MRI for comparison when the specialist does another MRI.
When you go to see your MS Specialist, the first thing that he/she will want is a full history. It would be helpful to both you, the patient and the doctor if you were to make up a timeline of your symptoms ahead of time. This will give the doctor a better picture of your symptoms and will take the pressure off of you to remember everything in a stressful situation.
The next thing the Specialist will do is a full in-office Neurological Exam. It is imperative that this exam is done and if it is not done it is up to you to be pro-active and INSIST that this exam is performed.
This is a head to toe exam that may include requests for you to walk across the floor heel to toe, you will be asked to touch your finger to the doctors finger suspended in front of you and then to your nose with your eyes closed, you will be asked to rub your heel down your opposite shin...nothing too scary, they just seem a little strange. A good exam will probably take 30 minutes or more. The results of this examination will tell your Specialist about your Mental Status, Cranial Nerves, Motor Skills, Coordination and Gait, Reflexes and Senses. This in office examination is crucial to the possibility of a diagnosis of MS. Did your neurologist perform an examination such as this Anita?
Ok, so now you have had an MRI and an in-office examination and the results are inconclusive...What next?
Your MS Specialist may suggest a Lumbar Puncture. It sounds scarier than it is and most people have no difficulty with it at all.
During the Lumbar Puncture the MS Specialist will extract a small amount of spinal fluid from your lower back and it will be studied for the presence of Oligoclonal Banding which is present with MS.
If there are no Oligoclonal Banding a positive IgG index will suffice as a positive LP. The fluid will also be studied for a myriad of other diseases as well.
If MS is highly suspected but there is not enough evidence for a diagnosis then Evoked Potential testing is brought into play. Evoked Potential testing measures the time it takes for a nerve to respond to stimulation. There are three types of tests used to obtain evoked potentials, Visual evoked, Auditory brain stem evoked and Somatosensory. Each response is recorded from brain waves by using electrodes taped to the head. Visually evoked response is the most commonly used to diagnose MS.
These are the tests that are used to try to discern whether a diagnosis of MS can be made or not. It is very important to remember that a good MS Specialist that suspects MS but can find no indication, follow up with the patient at 3 to 6 month intervals, for years, if necessary, to gain further information.
I believe that taking in the symptoms that you have expressed here, you should probably be seen by an MS Specialist. The memory loss and lack of balance would show up in a proper in-office exam and further tests should be taken.
Please know that we are here for you 100% on you journey to a diagnosis. A journey to a diagnosis of MS can be a very long and arduous one but should you have questions, need to vent, or just need someone to listen, the people here will do everything they can for you. Please let us know if you are able to see an MS Specialist and what sort of results he/she comes up with ok?
Lots of Hugs,
Rena
Spazie Ada seems to have asked the right questions and that leaves less for me I guess!
I see that you have had an MRI which is a good thing but the first thing I would advise is to get an appointment with an MS Specialist!
Why you ask? While a neurologist can deal with many neurological diseases, if you are suspected of having MS you NEED to be treated by an MS Specialist.
An MS Specialist is trained to study your MRI and has the experience to discern differences in your MRI that a Neurologist or Radiologist is not. This ensures that you will have the proper results at the start of what could be a long road to a diagnosis. Were you able to obtain a copy of your MRI for your own records? This might be something you may want to do so that if you are able to see an MS Specialist, you will have an MRI for comparison when the specialist does another MRI.
When you go to see your MS Specialist, the first thing that he/she will want is a full history. It would be helpful to both you, the patient and the doctor if you were to make up a timeline of your symptoms ahead of time. This will give the doctor a better picture of your symptoms and will take the pressure off of you to remember everything in a stressful situation.
The next thing the Specialist will do is a full in-office Neurological Exam. It is imperative that this exam is done and if it is not done it is up to you to be pro-active and INSIST that this exam is performed.
This is a head to toe exam that may include requests for you to walk across the floor heel to toe, you will be asked to touch your finger to the doctors finger suspended in front of you and then to your nose with your eyes closed, you will be asked to rub your heel down your opposite shin...nothing too scary, they just seem a little strange. A good exam will probably take 30 minutes or more. The results of this examination will tell your Specialist about your Mental Status, Cranial Nerves, Motor Skills, Coordination and Gait, Reflexes and Senses. This in office examination is crucial to the possibility of a diagnosis of MS. Did your neurologist perform an examination such as this Anita?
Ok, so now you have had an MRI and an in-office examination and the results are inconclusive...What next?
Your MS Specialist may suggest a Lumbar Puncture. It sounds scarier than it is and most people have no difficulty with it at all.
During the Lumbar Puncture the MS Specialist will extract a small amount of spinal fluid from your lower back and it will be studied for the presence of Oligoclonal Banding which is present with MS.
If there are no Oligoclonal Banding a positive IgG index will suffice as a positive LP. The fluid will also be studied for a myriad of other diseases as well.
If MS is highly suspected but there is not enough evidence for a diagnosis then Evoked Potential testing is brought into play. Evoked Potential testing measures the time it takes for a nerve to respond to stimulation. There are three types of tests used to obtain evoked potentials, Visual evoked, Auditory brain stem evoked and Somatosensory. Each response is recorded from brain waves by using electrodes taped to the head. Visually evoked response is the most commonly used to diagnose MS.
These are the tests that are used to try to discern whether a diagnosis of MS can be made or not. It is very important to remember that a good MS Specialist that suspects MS but can find no indication, follow up with the patient at 3 to 6 month intervals, for years, if necessary, to gain further information.
I believe that taking in the symptoms that you have expressed here, you should probably be seen by an MS Specialist. The memory loss and lack of balance would show up in a proper in-office exam and further tests should be taken.
Please know that we are here for you 100% on you journey to a diagnosis. A journey to a diagnosis of MS can be a very long and arduous one but should you have questions, need to vent, or just need someone to listen, the people here will do everything they can for you. Please let us know if you are able to see an MS Specialist and what sort of results he/she comes up with ok?
Lots of Hugs,
Rena
Hello and welcome. I have a question, do you have color changes in your feet and hands or any mottling in your arms or legs? I'm not familiar with pericarditis, my dad had endocarditis. Have they done bloodwork to rule out any blood disorders like sticky blood syndrome? It looks like the lung specialist did a thorough job, are you on any treatment for the pleurisy?
I do recommend seeing a neurologist and I hope you get a good one that will do all the necessary testing. I know degenerative bone issues can cause some strange symptoms. Have you seen an opthamologist for the blurry vision? Do you have any eye pain with the blurry vision? I ask because it sounds like you may have optic neuritis or what we call ON here. We can only suggest things here and not diagnose anything.
Sorry for all of the questions, I am a little nosy.:)
Again Welcome,
Spazie Ada
I do recommend seeing a neurologist and I hope you get a good one that will do all the necessary testing. I know degenerative bone issues can cause some strange symptoms. Have you seen an opthamologist for the blurry vision? Do you have any eye pain with the blurry vision? I ask because it sounds like you may have optic neuritis or what we call ON here. We can only suggest things here and not diagnose anything.
Sorry for all of the questions, I am a little nosy.:)
Again Welcome,
Spazie Ada
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