Hey, New to the boards and MS

[Stampndiva]

Hey all! New here. 40 year old mother to 8 year old girl (Larken) and wife to hubster (Ed) and mommy to a little furrmonster named (Gertie). I was diagnosed with MS about 4 years ago and then told a few months later that I didn't have MS...fast fwd to now and I was referred back to SAME doctor who before said yes than no and now again yes!

So during that time I kept saying something is wrong, I'm not getting better, I'm getting worse! My MS "symptoms" are horrible neuropathy from my toes to my knees, now in my left arm fingers to shoulder, brain fog, nystagmus, neck stiffness, strange silver metallic orbs that come and go in my vision, trouble walking, I cannot walk at night/darkness of any kind, balance is horrible, speech is slurred and daily morning headaches.

My symptoms are WORSE in the winter - temps don't help but walking outside seriously makes every muscle in my body freeze up and I cannot move! So that's me! I'm currently taking REBIF REBIDOSE but I'm going for a second opinion and debating trying another treatment. I'm desperate for some relief.

No One understands the Hell I'm in, they say have another cup of coffee and wake up! The fatigue is dibilitating! I need to go back to work but until I can get some of these "symptoms" under control I'm going to have to wait, unless there is a legit work from home deal that I haven't heard of yet. Hehe!!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Seasha]

Hi Stampndiva and welcome to MSWorld! It's nice to meet you. It must have been quite a challenge to have a seesaw round with your Dr about your diagnose. I've heard that before from some members here and how frustrating!

But now, you have the ability to get on some kind of DMT (drug modifying treatment). Have you decided which route to go? Our Medication forum has many threads about the different meds and members experiences with them. There are so many to choose from now and there are also many meds for symptom management!

You will find that some people just don't understand what we're going through, sad to say. But the beauty of MSWorld is that we completely know and get it! Please post whatever questions you may have an explore around. We're happy to help you in any way that we can!

Take care

[JerryD]

Hello and welcome, Stampndiva. This is THE place for MSer's. I have to ask you a few things.
Do you see an MS specialist? What is your vitamin D level? What DMD are you taking? If your neurologist did not suggest a DMD, he/she is probably NOT an MS specialist.
Having a specialist is very important! Believe me ! I didn't have one for the first 5 years after my confirmed diagnosis. I now know that it is really important! I now see a neurologist who treats almost 150 MS patients. He saw all of my records and said that he was surprised that I wasn't convinced to use a DMD by my neurologist.
I immediately asked if he would take me on as a patient. I have been on Techfidera for about a month, now. Good luck. Don't be a stranger.

[Mamabug]

Welcome, S.

You don't mention an MS med, so we are assuming that you are not taking one. Yes; they are very important to reduce the severity of flares, to reduce the the fx of flares, and to delay the progression of the disease. They will not control symptoms, but there are other meds that are often available to do that. it does sound like your doc is not giving you the care that you are entitled to. I wonder, do you even see a neurologist? Perhaps your primary care physician is attempting to manage your meidcal care, and you require visits with a more highly qualified physician when you have MS.

Some general neurologists are very qualified. I had a fairly good neuro for five years. He put me on a DMD as soon as I was dx. Unfortunately, my MS was somewhat a-typical and difficult to control. Add to that, Betaseron was not very effective for me, and he did not switch me to a different DMD.

I'm very happy with my MS Specialist now, but, I have to drive 3 hours to see her, and my neuro was a half hour away.

Just get someone,