Suspected MS

[helena1984]

Hi everyone, I'm new here. I have an appointment with a new doctor next week and I am not sure how to properly prepare for my doctor's visit.

Two years ago, I was told by an ER doctor in a different state that he suspected I have MS. I did not have health insurance at the time, so I was unable to pursue an official diagnosis. My symptoms are getting worse, so since I finally have insurance now, I desperately need to pursue some sort of diagnosis, MS or otherwise, because I am not able to function like this.

When I was 14, I developed a lot of cold sores in my mouth, with burning pain. Several visits to the ER and a few different doctors, none could figure out why I had developed the sores, and it took a couple of months and a lot of lidocaine to ease the pain for them to finally go away. Fast forward to when I was 18 - I began working at Burger King in the kitchen. I became seriously ill from the heat in the kitchen. The numbness in my feet began two days into working; five days later, I woke up completely numb from my feet up. This has continued for years - I am extremely heat intolerant, and I still have no feeling in my feet. When exposed to heat - hot showers, humidity, too high temperatures, a warm house in the winter, etc. - I become even more unsteady than I usually am, and I become very "brain fogged." I stupidly got into a hot tub a couple of years ago and fainted within a minute of entering. If I close my eyes when trying to walk or stand up, I fall, including if I just blink a little too long. I have a lot of 'brain fog' and speech problems - sometimes I cannot speak or I cannot figure out the words I am trying to say. I also have memory issues. I have tremors, typically worse on my right side, and issues with eye twitching that have been going on for years. I have a lot of muscle spasming - sometimes I spasm so much that I throw up, including having gone through episodes of four to five months straight of muscle spasms and throwing up several times a day. I was in urgent care last year for what I thought was a migraine, but the urgent care doctor also suggested MS after he witnessed the tremors and inability to speak as I became overheated. I have regular "pins and needles" feelings in my right arm/hand - in fact, I'm experiencing it right now, along with brain fog I have had for almost a month now, which feels absolutely horrible because I can barely remember what I was going to do most of the time and I feel like my brain is floating in space.

I guess I have a couple of questions that I hope someone might be able to answer for me about how to proceed with the doctor I will be seeing. My mom believes that I should not go into the appointment with a list of my symptoms, but allow the doctor to determine what they are by questioning me. I will not be able to remember everything I need to tell the doctor, and there is always the possibility that I will not be able to speak if the doctor's office is too warm. I was in the ER three weeks ago and ended up losing my ability to speak, along with having tremors, because the room was so hot, so I was not able to express why I was there and what I needed. Is it wise to go with a written list of symptoms I have been experiencing? Are there certain tests I need to ask for? My mom has me quite scared I am going to not be taken seriously if I go prepared, but I need help with whatever is going on, even if it is not MS.

Any advice would be greatly appreciated.

Edit: I forgot to add I have had worsening issues with my eyes, especially my right eye. I see blobs and sometimes see double. My right eye has progressively gotten worse, to the point where the last eye exam I had the eye doctor commented that the vision in my right eye was worse than he would have expected from my previous visit. He expressed concern, but did not suggest anything beyond getting an eye exam once a year instead of once every three years.

[ElliotB]

Do you want to help your doctor diagnose you as quickly and as accurately as possible or play games with him/her?

Unless you know for sure that your doctor is psychic, print your post out and bring it with you and let your doctor read it. Or make a list and bring it with you and let your doctor read it. It is in your best interest to help your doctor diagnose you as quickly and as accurately as possible.

[lyndacarol]

I have an appointment with a new doctor next week and I am not sure how to properly prepare for my doctor's visit.

Two years ago, I was told by an ER doctor in a different state that he suspected I have MS. I did not have health insurance at the time, so I was unable to pursue an official diagnosis. My symptoms are getting worse, so since I finally have insurance now, I desperately need to pursue some sort of diagnosis, MS or otherwise, because I am not able to function like this.

When I was 14, I developed a lot of cold sores in my mouth, with burning pain. Several visits to the ER and a few different doctors, none could figure out why I had developed the sores, and it took a couple of months and a lot of lidocaine to ease the pain for them to finally go away. Fast forward to when I was 18 - I began working at Burger King in the kitchen. I became seriously ill from the heat in the kitchen. The numbness in my feet began two days into working; five days later, I woke up completely numb from my feet up. This has continued for years - I am extremely heat intolerant, and I still have no feeling in my feet. When exposed to heat - hot showers, humidity, too high temperatures, a warm house in the winter, etc. - I become even more unsteady than I usually am, and I become very "brain fogged." I stupidly got into a hot tub a couple of years ago and fainted within a minute of entering. If I close my eyes when trying to walk or stand up, I fall, including if I just blink a little too long. I have a lot of 'brain fog' and speech problems - sometimes I cannot speak or I cannot figure out the words I am trying to say. I also have memory issues. I have tremors, typically worse on my right side, and issues with eye twitching that have been going on for years. I have a lot of muscle spasming - sometimes I spasm so much that I throw up, including having gone through episodes of four to five months straight of muscle spasms and throwing up several times a day. I was in urgent care last year for what I thought was a migraine, but the urgent care doctor also suggested MS after he witnessed the tremors and inability to speak as I became overheated. I have regular "pins and needles" feelings in my right arm/hand - in fact, I'm experiencing it right now, along with brain fog I have had for almost a month now, which feels absolutely horrible because I can barely remember what I was going to do most of the time and I feel like my brain is floating in space.

I guess I have a couple of questions that I hope someone might be able to answer for me about how to proceed with the doctor I will be seeing. My mom believes that I should not go into the appointment with a list of my symptoms, but allow the doctor to determine what they are by questioning me. I will not be able to remember everything I need to tell the doctor, and there is always the possibility that I will not be able to speak if the doctor's office is too warm. I was in the ER three weeks ago and ended up losing my ability to speak, along with having tremors, because the room was so hot, so I was not able to express why I was there and what I needed. Is it wise to go with a written list of symptoms I have been experiencing? Are there certain tests I need to ask for? My mom has me quite scared I am going to not be taken seriously if I go prepared, but I need help with whatever is going on, even if it is not MS.

Any advice would be greatly appreciated.

Welcome to ThisIsMS, helena1984.

I certainly respect your mom's opinion on medical appointments, but I have found that, for me, it works best to take a written list of symptoms, and even questions. (My memory often fails me at the time – whether "brain fog" or nervousness. In the quiet of my home, I can collect my thoughts more accurately.)

My list keeps the discussion on track and makes efficient use of the precious time with my doctor. If anything, I think your doctor will take you more seriously when you have obviously prepared and given thought to your situation.

Let the doctor hear all your symptoms and let him make the diagnosis. But realize that there is no definite test to prove your problem is MS – it can only be considered as a possible diagnosis AFTER other more likely possibilities have been ruled out.

Since nutrient deficiencies can cause neurological symptoms such as yours, I would suggest that you ask your doctor to order these, starting with a vitamin D test, testing for your vitamin B12 level, and others (like magnesium, iron, and zinc).

Also, request your own copies of any test results – it is important to have the actual numbers.

[helena1984]

Thank you for your responses.

My appointment was today and my doctor is 100% positive I have MS after going over my medical history and symptoms. I wrote out a thorough timeline of all of my medical issues, plus a list of symptoms I am currently experiencing. I am being scheduled for an MRI, and I had blood work done, too. She went over everything and was excited because it seems MS is the answer.

[ElliotB]

Glad you got a fast diagnosis!

There is so much you can do for yourself to help you feel better soon! There is a lot of information on this site and on the web and I hope you will take the time to research such info so you can do the best possible under these circumstances.

[lyndacarol]

My appointment was today and my doctor is 100% positive I have MS after going over my medical history and symptoms. I wrote out a thorough timeline of all of my medical issues, plus a list of symptoms I am currently experiencing. I am being scheduled for an MRI, and I had blood work done, too. She went over everything and was excited because it seems MS is the answer.

You stated in your first post, "woke up completely numb from my feet up" and later you wrote, "I have regular 'pins and needles' feelings in my right arm/hand." Numbness/tingling in the legs and arms is a common symptom in many conditions and is the textbook definition of "peripheral neuropathy." In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

I am surprised that the results were returned so quickly to your doctor, allowing her to rule out the more likely causes for your symptoms (most of us have waited much longer for our diagnosis). MS is a diagnosis of exclusion – these other possibilities must be ruled out FIRST. In the blood work that was done I assume the tests listed above were done to rule out each possible cause of your peripheral neuropathy.

By the way, would you share the actual number results of your vitamin D and vitamin B12 tests? These are often low in people with MS – my vitamin D level was low at 24 ng/mL.