Diagnosed with Multiple Sclerosis - what questions should I ask my neurologist?

Question

I have been recently diagnosed with Multiple Sclerosis. My first MRI showed one lesion on my thalamus, one smaller one on my spinal cord. Three weeks later the smaller one on my spinal cord is now larger and active, and I now have one in my left superior cerebellar peduncle. I had a brief hospital stay after my lumbar punctur which included the second MRI. i have my bloodwork back and information. What are some questions I should consider asking my neurologist when meeting with him for the first time after being diagnosed?

Thank you, Kaz

Answer 1

Hi Kaz,

I'm going to make a few assumptions since you said you were diagnosed. You only detailed MRI results, you didn't talk about clinical symptoms. What kind of symptoms did you have? And do you still have them? Did they go away?

These questions will determine what classification of MS you have. As some other folks have said, the most common form of MS is "Relapsing-Remitting" MS, where the disease "relapses" or exacerbates for a few weeks to a few months, and then "remits" for a longer period. The severity and the length of time between relapses is really unknown, and is different from person to person. There are drugs available to treat RRMS which will lessen the severity of the relapses and lengthen the remissions. They will also reduce the number of active lesions on your brain. All the drugs essentially do this, but they are taken at different frequencies (from once a week to every day), and produce different side effects (the one that produces no side effects has to be taken daily). If you have RRMS, you do want to get on the medication as soon as you can, because once nerve tissue is damaged, it does not recover. Myelin can, in some cases, be regenerated, but in most cases, nerve damage is permanent. So time is of the essence.

There are other forms of MS, such as Primary Progressive MS, where there are no distinct periods of relapsing and remitting, but continual slow worsening of symptoms. This is relatively rare of all the cases of MS diagnosed. You'll want to know what your neuro thinks you have.

Hopefully also, your neuro thinks much like I do (and my neuro does), that the conservative approach to treatment is to "conserve" as much nerve tissue as possible, so prompt treatment is essential to meeting that goal.

Good luck to you, and if you have more questions, feel free to ask me directly.

CJ

UPDATE: I just took a look at Sheena's link to WebMD, and the 10 questions to ask your neuro about MS. It's brilliant, please read that before you go!

Answer 2

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Answer 3

Hi there Kaz. I was diagnosed with MS almost 2 years ago at 19. You need to ask him which MS he thinks you have, the majority start as replasing remitting MS which is where the attacks come in waves, there are four types total.. Ask about the different treatments and which HE finds the best, all neuro's have different opinions on it. Most will let the person decide what to take, but I aked mine for his opinion. The first neuro I had I "fired" I just didnt like the way he cared for me. So if you arent feeling this guy, find a new one. This is someone you will be working closely with for years so you need to be comfortable. make a list of everything you want to ask your nuero. Ask about steroids for any symptoms you have. One good one is to ask, what would HE do if it was HIM.

if you want to talk, email me

good luck to you

Answer 4

No, people do not die from MS, they can die from the complications caused by MS, but this is extremely rare and MS is not considered a fatal disease, just like people with MS on average have a lifespan that matches that of the general population. For relapsing-remitting MS, there are disease modifying drugs such as Avenex, Betaseron, Copaxone, Rebiff and Tysabri. None of these will cure MS, but they can slow the progress of the disease. Apart from these, most other treatments addresses symptom treatment only. Many people with MS lead normal or near normal lives, but a few, approx. 15% of those diagnosed will end up in a wheel chair at some point and a few of these will end up bedridden. People with MS have different symptoms because these all depend on which part of the brain and spinal cord the MS attacks and how frequent and how severe these attacks are. For example; an attack in the optic nerves will result in optic neuritis, an attack in the language center of the brain can result in problems speaking, an attack in the nerves that control bladder function can result in incontinence etc. And then there is the severity of attacks: a severe MS attack in the lower spinal cord can lead to nerve damage in the nerves that control leg-function, which can results in problems walking. A minor attack in the same spot could result in just small sensory disturbances like a slight feeling of pins and needles. As for frequency. Some people with MS experience several frequent attacks, others could have just one attack their entire lives. For relapsing-remitting MS, the body often heals itself, which explains why someone might have difficulties walking in May and be playing football in August. For progressive MS there are no attacks, but instead a slow progression of symptoms. Even though you don't feel right now that you have the energy or the time to read up on MS, I would strongly advise you to do so, since the information you will get from asking on sites like this is likely to be flawed. There are a few of us in here, like pcheesewhiz who also answered your question, with MS and actual knowledge of MS, but for some reason questions about MS seem to attract a number of people who will answer without knowing what they are talking about. To be fair, they might think they do, but they do not. Your neurologist should also be able to answer any questions you might have. Don't hesitate to ask him, I'm sure he's heard all the questions there is to ask before. :) All the best to you. I do hope that it turns out that you do not have MS, but if it is MS, then an MS diagnosis is not a death sentence - far from it. EDIT: Justmeinthisworld, I was not referring to you above, although you seem to have that impression? Also if you compare our posts, you will see that our answers are not directly contradicting each other.

Answer 5

Be sure to ask him what the treatments options are at this time for you. Also, ask him to point you in the direction of the nearest MS society office near you as they can and do provide services when you need them such as safety bars, bathtub chairs , etc.
They also provide a set monetary amount that is available to you every year for things such as air-conditioning for your home and anything else that is MS related including maids to clean your house when you are not up to it.
Have your doctor explain how to get ahold of him when needed and most of all discuss all the side effects of any medication you may be contemplating.
If you don't feel comfortable with your neurologist fine another one pronto as you need to know he is there for you and your concerns at all times.

And remember, no question you ask your neurologist is a dumb one. Above all, be informed.

Answer 6

I don't have much info to give you, but some of the people here might be able to help:
http://butyoudontlooksick.com/
There are WONDERFUL support groups, and message boards that might be of quite a bit of help!
I'm a member there, (I have Fibromyalgia. Bout the same kind of pain you're going through, but thankfully, it doesnt cause actual muscle damage) and I know that it will help, having someone who has MS to talk to,
Read about the spoon theory, it's really interesting, and really does make sense.

Here's WebMD's list of Q's to ask your doctor:
http://www.webmd.com/solutions/diagnosis-multiple-sclerosis/10-questions

Good luck sweetheart, and hang in there!!!
Sheena
(((((((spoons and very gentle hugs))))))))

Answer 7

My mom has M.S. and you should ask which one you have (there are a few different kinds), can you take Betaseron shots. You can contact the M.S. Society for information @ http://www.nmss.org/. There is alot of helpful info. Good luck.

Answer 8

That is where my freind goes. She says it offers A LOT of support. Good luck. Sorry I couldn't help more.

Answer 9

I am really sorry to hear about that. But don't worry, everything eventualy works out. I am sorry i couldn't have been further help, but try Central Baptist's Homepage, i hear they might have something about multiple sclerosis.

You Will Be Fine........ : D

Answer 10

www.webmd.com