New Here - New Diagnosis

[Madaket78]

Hello everyone! I hope that you all are doing well today and are not too miserable with your symptoms. I returned to work for the first time today in weeks because I have felt so awful. I did not work a full 12 hour shift and I still came home, went straight to bed to sleep, and I feel like I have been run over by a train. So, that's fun.

I was just diagnosed on Friday by a neurologist as having MS. He mentioned a few courses of action, one being going to a specialist in Cleveland or in Tennessee somewhere, and he said that there are medications to treat the symptoms of MS. He scheduled me for a visit with a special opthomologist and a third MRI in 6 months. We vaguely discussed medications but he didn't prescribe anything. I was just trying to process everything he was saying and did not think anything of it at the time. But I am wondering, is it normal to get a diagnosis and have the doctor wait a bit before prescribing something?

I may just have to email him and tell him I need to feel better so please try some meds! He told me that he suggests behavioral changes to help with the fatigue. I looked at him, dumbfounded, and said "exactly how am I supposed to exercise when I cannot get out of bed." He had no response. And it is not like I am a lazy person - I have a horse that I used to ride regularly. This past month though I cannot keep my eyes open to save my life.

Maybe if I find a doctor who has MS then they would understand better.

[Anonymoose]

Hi madaket,

Welcome to the club. I'm glad you seem to be handling things so well at such a difficult stage. Attitude is what will carry you through.

My neuro gave me my diagnosis and scheduled an appointment to talk meds a month later. I think they like to give you time to absorb the news and do some preliminary research on meds. As for your neuro's comment on using behavior adjustment for symptom management, he's got a point. There are many different symptoms and many different meds for them. Every med you put in your body costs you in some way...they all have side effects even if you don't feel them. So, if you can manage some of your symptoms with behavior modification or more natural ways, that's probably better for you in the long run. You kind of have to test things out to see if you can make things work without meds. If you can't, then pick the worst symptom and take a med for that and see if it doesn't help make the rest of your symptoms more manageable.

I manage well without meds but I don't work outside the home so I enjoy a lot of flexibility to accommodate my limitations. (I have tried some meds but most were to try to wipe out the disease or limit the inflammatory cascade (side effects!)).

You've got a lot of decisions to make. Take your time and do your research. It's important that you be your own advocate.

[ElliotB]

"exactly how am I supposed to exercise when I cannot get out of bed"

The answer is quite simple, you force yourself to. You have to in order to help yourself get better. And challenge yourself to do more each day. For example, walk for 5 minutes the 1st day and then the next time go for a bit longer and the time after that go a bit longer again. Your body needs exercise now more than ever. It will take a lot more effort (significantly more) now to do a lot less but you can do it, and in time you will increase your endurance. Apply this principle to whatever form of exercise you choose to do.

There are many good books you should read (all the popular MS books are quite good). All will suggest diet and lifestyle changes. Many will suggest taking supplements and exercise.

Keep in mind that the medications simply help reduce the frequency of relapses and likely do not address the progression of the illness, but it is believed that through diet, exercise, lifestyle change and supplements you may be able to improve your chances and feel a lot better.

Know that you will feel better soon, hopefully sooner, rather than later!

[ElliotB]

I forgot to add to my comments above that the more you exercise, the less tired you will feel. The transformation from being tired to being energetic is not overnight but it does happen over time.

[Froggie]

Hi madaket78,

Welcome to the club is right! Sorry to hear of the diagnosis, but at least now you know what you're dealing with. It will take awhile to process everything and by all means, take your time. My first neuro didn't prescribe meds either and I had to make a lot of decisions on my own. Read everything you can get your hands on and educate yourself. Also, having another person such as a spouse or a trusted friend with you can be very helpful during appointments. Reason being, they will often see symptoms before you do and may have questions you haven't thought of. I tend to forget things even if they're written down!

If you decide to see a specialist, I would recommend the Cleveland Clinic if you live in the area. They have a stellar reputation and are definitely on the cutting edge of research with this disease. I lived in North Carolina for almost 20 years and I have to say the South is a bit backwards with MS care. You may have to travel a bit, but if you find the right doc it's worth it. You have to find someone you're comfortable with.

If you have further questions, this is a great place to ask. I know it's overwhelming, but somehow we all get through it. Hang in there!

[jimmylegs]

http://www.canadianliving.com/health/nu ... thargy.php

http://www.sciencedirect.com/science/ar ... 7786900101

http://europepmc.org/abstract/med/17557490

http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract

[Ejonesbowlie]

Hi there!

I am newly diagnosed myself. Though in my case, I have suspected MS for years. I have been exhausted for years...think I just got used to it as being my "normal" and just found ways to adjust. I currently have some pretty significant symptoms. Spasticity, right leg weakness, drop foot. Not fun at all. However, I do find that one thing that does help me feel better is exercise. Granted I am limited in what I can do, but I have an exercise bike and some light weights...I try and do about an hour combo every other day. I do for sure have to pace myself because if I over do it my body tells me for sure!

I do believe that everyone is different in what works for them. Believe me, I am no expert and all I do is keep trying everyday. I just know from my personal experience that even though some days it is hard, as others have stated, exercise ultimately does help.

I wish you the best

Beth