New MS diagnosis

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MSKarateka
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New MS diagnosis

Post by MSKarateka » Sun Mar 12, 2017 9:10 pm

I would not consider myself to be very symptomatic.

I was wondering what questions should I be asking my doctor.

I haven't been sick in my life so a lifelong illness is a new experience to me.

David1949
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Re: New MS diagnosis

Post by David1949 » Sun Mar 12, 2017 9:20 pm

Have you been diagnosed with MS? If so what was the basis for the dx? Did you have an MRI that revealed scars on the brain or spinal cord? Did you have a spinal tap?

What symptoms do you have?

MSKarateka
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Re: New MS diagnosis

Post by MSKarateka » Sun Mar 12, 2017 9:29 pm

My symptoms have been numb legs and reduced coordination in my legs. I did have an MRI with lesions and a nice little bright spot that looked like I was having a bright idea. Lesions in both my brain and the part of the spine they had, I am going for an MRI of the rest of my spine in about 6 hours. No spinal tap.

The diagnosis is official.

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Scott1
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Re: New MS diagnosis

Post by Scott1 » Sun Mar 12, 2017 10:54 pm

Hi,

If you have a diagnosis and not yet have any treatment prescribed the question should be "why am I having a particular treatments?". Some loss of co-ordination and no other symptoms doesn't necessarily mean you have to start a full on new form of medication.

It may be that they just want to stop the current burst of inflammation and a little bit of IV cortisone might be prescribed. They might do nothing and just wait. Perhaps just be open minded and accepting of the diagnosis. Usually you are treated with great courtesy and given time to absorb what's been said.
Rather than asking questions, let them speak. We can translate but remember we are interested amateurs. They will come back a number of times before much happens if it follows the usual approach.

Regards,

David1949
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Re: New MS diagnosis

Post by David1949 » Mon Mar 13, 2017 11:38 am

One thing you will want to know eventually is whether you have relapsing remitting MS (RRMS) or primary progressive MS (PPMS).
There are drugs that can help you somewhat if you have RRMS. But the drugs are not effective for PPMS. Unfortunately in the early stages of the disease it is difficult to tell which one you have. One clue could be your age when it started. RRMS typically starts in the early to mid thirties. PPMS usually starts in the early to mid 40's. Although either one can start at any age.

If you have periodic relapses where you get worse followed by remissions where you get much better then you probably have RRMS. If you don't have relapses or remissions , but just a steady progression of disability then you probably have PPMS. Also RRMS is more common. Only about 10% of people with MS have PPMS.

MSKarateka
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Re: New MS diagnosis

Post by MSKarateka » Sun May 21, 2017 4:20 pm

I have RRMS. As far as I can tell I have had just the one attack which I thought was a lower back problem. There have been other lesions, but only 1 attack that affected me.

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ThisIsMA
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Re: New MS diagnosis

Post by ThisIsMA » Tue May 23, 2017 11:58 am

There are lots of ways to learn about MS in addition to from your doctor.

When I was newly diagnosed I received pressure from my neurologist to go on a disease modifying drug. The list of side effects of those drugs was very sobering. After researching, I decided not to take the drugs and I have no regrets so far.

Things that helped me include:

1) "The Wahls Protocol" a book by a medical doctor with MS who tried the MS drugs to no avail and then after doing a lot of research developed a diet that has dramatically improved her life: http://terrywahls.com/the-high-cost-of- ... -my-money/

2) Vitamin D3 (for more information in the vitamin d thread on ThisIsMS): http://www.thisisms.com/forum/coimbra-h ... 27163.html

3) There's also the "Overcoming MS" website: https://overcomingms.org/about-oms/

4) Taking steps to reduce the stress in my life

I am not affiliated with any of the above programs or websites.

I am not a medical professional and I am not giving out medical advice. I do recommend that you do your own research and seek advice from the health care professionals of your choice.

The ThisIsMS website has information on many more resources. These are just ones I found helpful for me as a person with MS.
DX 6-09 RRMS, now SPMS

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lyndacarol
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Re: New MS diagnosis

Post by lyndacarol » Wed May 24, 2017 3:52 pm

ThisIsMA wrote:Things that helped me include:

1) "The Wahls Protocol" a book by a medical doctor with MS who tried the MS drugs to no avail and then after doing a lot of research developed a diet that has dramatically improved her life: http://terrywahls.com/the-high-cost-of- ... -my-money/
In the Reading Nook sub forum, The Wahls Protocol by Terry Wahls, M.D., http://www.thisisms.com/forum/reading-n ... 27780.html, can be found.

Her protocol is so much more than just diet. Her weekly use of a tanning bed provides vitamin D.

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