A Few Questions to start with

[Hank93]

My wife is 40 years old and has just been Dx'd with ME but wedding know any specific type yet. She has her first Neuro appointment tomorrow morning. We are hoping for more information but realize it will probably take more test and time to get more specifics.

We believe she has had MS for a few years now with the symptoms she has had. Question number 1 of many to come, she has had pretty severe weight loss and tried everything to gain weight, we have not read where this is a common symptom of MS, has anyone else experienced this?

Also can anyone explain the various types of MS and how they differ from each other?

What should we expect from a neurologist? And how long should we expect before she will start some sort of treatment?

She had a really bad day yesterday with fatigue and neck pain but seems to be a little better today. Her main symptoms are fatigue, neck and back pain, blurred vision, restless legs at night, coordination issues when walking and frequent bladder issues.

We are both in the Military and she has worked (office job) for 11 days straight and I can tell it has taken a toil on her. She actually stayed home one of those days and slept most of the day.

It is nice to know this site is here and I am sure we will be asking questions often for a while. We appreciate all the help and insight we can get on this battle that we know lies a head of us. It is nice to finally know what has been causing all of her issues but it was still a huge surprise that we are not used to yet.

Thanks again,

Tim

[Dsdickinson]

questions

Hi Tim
I know you have a lot of questions and I can tell you I am not the best to answer them plenty of people will be responding with great help, but I have been dx since December. My symptoms started a year ago and it started out as pain in my neck. Long story short, ended up having neck surgery and now think I did not need it because of still having pain. The fatigue has been debilitating at times to say the least. If you don't mind some sharing information, what is the neck pain like that she has?
Thank you
Debbie

[JerryD]

The questions you asked would require an MS specialists answers. i am not qualified to answer your questions. You need to look at the NMSS and MSAA sites. I can tell yu that there are 4 types of MS: Relapsing Remitting, Secondary Progressive, Primary Progressive and Progressive Relapsing(?). I am not sure of the name of the last one. it is considered to be the rarest form. Good luck

[22cyclist]

My wife is 40 years old and has just been Dx'd with ME but wedding know any specific type yet. She has her first Neuro appointment tomorrow morning. We are hoping for more information but realize it will probably take more test and time to get more specifics.

We believe she has had MS for a few years now with the symptoms she has had. Question number 1 of many to come, she has had pretty severe weight loss and tried everything to gain weight, we have not read where this is a common symptom of MS, has anyone else experienced this?

Also can anyone explain the various types of MS and how they differ from each other?

What should we expect from a neurologist? And how long should we expect before she will start some sort of treatment?

She had a really bad day yesterday with fatigue and neck pain but seems to be a little better today. Her main symptoms are fatigue, neck and back pain, blurred vision, restless legs at night, coordination issues when walking and frequent bladder issues.

We are both in the Military and she has worked (office job) for 11 days straight and I can tell it has taken a toil on her. She actually stayed home one of those days and slept most of the day.

It is nice to know this site is here and I am sure we will be asking questions often for a while. We appreciate all the help and insight we can get on this battle that we know lies a head of us. It is nice to finally know what has been causing all of her issues but it was still a huge surprise that we are not used to yet.

Thanks again,

Tim

Tim: I am sorry about your wife's diagnosis, but it is good that she was diagnosed at the same time so now she can get treatment.

Question 1: Loss of weight. She may have been having what we call exacerbations. These are little flare ups of our disease where inflammation of the brain causes symptoms to temporarily to get worse. Having several of these often cause loss of weight, especially if brain lesions, or spinal cord lesions are a part of these exacerbations. I always loose weight right before I collect a new lesion, but then they give me steroids, and I gain it back!

Question 2: Different forms of MS:

A. RRMS: Relapsing Remitting MS. This is the most common in women. For the most part the person with MS is on a slow path to disability depending on how bad their exacerbations are. They can go along for as much as a year or more sometimes depending on which MS medication they are taking in remission before they have an exacerbation. This may or may not come with a new lesion. It may just be an old lesion that has become active. The treatment for that is IV solumedrol for 3-5 days. This does not stop the relapse, but slows it down by slowing the inflammation. People with RRMS can stay in this stage for many years. More than 80% of people begin with RRMS.

B. SPMS: Secondary Progressive MS. SPMS often develops in people who have relapsing-remitting MS. In SPMS, relapses and partial recoveries occur, but the disability doesn't fade away between cycles. Instead, it progressively worsens until a steady progression of disability replaces the cycles of attacks.

C. Primary-progressive MS (PPMS). PPMS progresses slowly and steadily from its onset. There are no periods of remission and symptoms generally do not decrease in intensity. About 15 percent of people who have MS have PPMS.

D. Progressive-relapsing MS (PRMS). In this relatively rare type of MS, people experience both steadily worsening symptoms and attacks during periods of remission.

4. What should we expect from a Neurologist? Your neurologist should listen to you. They are not especially the touchy feely type in most cases. They will do a thorough neurological exam, ask about her history of symptoms, watch her walk and do a bunch of other things that will look weird to you but are part of the neuro exam.

They will also sit down with you and fully discuss the MRI, the diagnosis, and treatment.

You should be given choices of medications and you may want to take a few days to decide which is best for you both.

I am sorry she has been feeling so bad for so long, but hope they can give her something to ease her pain and fatigue.

Best of luck to you both and let us know how it goes!

Lisa
Moderation Team

[mlissa67]

Military Forum

Hi Tim,

There are a lot of great forums to ask questions. The military/veterans sub forum is a great place to ask military specific questions.

I was still on AD last year at this time waiting to hear the outcome of my MEB. I'm now retired with full benefits. I do know there are people on AD with MS, what has to be proven is stability of the disease process, for me there was none.

We would love to have you visit the sub forum, you might find some answers there and if not there are plenty of military members to help answer questions. I'm sorry for your wife's diagnosis, I can still remember how I felt and how scared I was for my career.

Take care

[Hank93]

Thank you all for the responses, they are very helpful. I think the big suspense now is finding out what type she actually has and seeing how the treatment is going to respond for her.

I especially liked hearing (hope that doesn't sound bad) about the weight loss explanation. The exacerbation process that was explained very much sounds like what it going on with her.

I am worried that it appears that her decline has been a steady one. I hope that it is only because she has been going untreated all this time and that treatment may improve her overall well being and maybe lead to some weight gain. I don't think her weight is bad enough to be causing severe health issues but I know it would make her feel better about herself.

As for the Military, we work with a pretty good bunch of people and everyone likes her out there. We are not going to make any life changing decisions at this point until we know more.

Thanks again everyone...