MS Specialist or Neurologist?

Hello,

I am new to posting as I have never posted before so please bare with me.  I am newly diagnosed with MS and have been trying to educate myself and family as much as possible.

I was told by someone that I needed to see an MS Specialist and not a Neurologist for my MS.  My neurologist is wonderful to me; however, I do not know anything about an MS Specialist.  From my internet search the closest MS Specialist is almost a 4 hour drive from where I live. 

Would someone please explain the differences or advantages between these?  I would also like to know if anyone was seeing a Neurologist and then changed to an MS Specialist - how the experience was for you, positive or negative?

Thank you in advance for all of you that take the time to help others, and thank you for helping me.

Hi rhondab!

Thank you so much for your response and words of encouragement.  I believe my neuro is a rare gem b/c he's very understanding and compassionate.  I know he has experience with MS patients and even completed his residency at a leading hospital where they used to do the "hot bath" tests in the 1980's and has continued with the research of MS ever since. 

It may sound strange but I'm relieved that it is MS and not an automatic fatal disease.  Plus, it finally validated my symptoms & showed me I wasn't crazy after all.  Of course now I'm in the "scared" part of starting treatment & phases of steroid IV infusion. I'm so nervous - but who wouldn't be.

Again thank you, I hope to be able to join a chat soon (I don't even know what a chat is but sure would like to try it).

PrayerWorks

 

Hello Prayer:

 

I do not suppose you are from Detroit MI area, are you

 

John

Hey Prayerworks,

I love the name, by the way. I wanted to welcome you to the board as well. If you like your neuro, then there is absolutely no reason to switch doctors. Like you have already discovered, this disease won't kill you. If you trust and find comfort in your current neuro, then you are blessed and will do well with him.

I know you are scared. Let me reassure that the IV steroids are managable. Get on something for heartburn and stay on it for at least a week after you stop treatment. Also have something to help you sleep that first and second night (benadryl works for many).

Please know that there are pretty distinct stages to accepting that you have a chronic and incurable disease. Be real patient and kind to yourself. Understand that you are going to run the gamut of emotions. That is very normal. Please ask just as many questions as you want. We also have a live chat on Monday afternoons. That happens at 6 central time ( your time zone perhaps?). Let me know if you can't figure out how to chat. Check out the word chat in the upper right hand of this page in the darker blue strip. You will have to "log in" and "log out". Make sure you can do all that......many like to try the logging in logging out deal before going to chat the first time.

This is a wonderful place with very very supportive people. I am glad you have found us.

Thursday a.m.

 

Dear Prayer:

 

Back in 1986, I had been experiencing some very unusual symtoms.....very slight double vision, very slight lack of balance, more than usual fatigue.....

 

....then, after about 4 weeks of symtoms, they went away.  But.....came back, several months later.

 

But....I'd still suggest contacting (even on-line) to get a series of brocures which they have  about all types of MS life.

 

No, I am not on any current therapies.   Almost 17-18 years ago, I tried Betaseron.  Did not work for me.  Could never get over side effects.

 

But....current MS wisdom is that the sooner you start a therapy, the better.

 

John

 

 

Thank you Gretchen1, odettesmom, Ebullins & Motown John!

The responses have been uplifting to me and I appreciate it very much. Talking with others has helped me the most, especially now. I was fortunate that my Neurosurgeon noticed I was having problems and referred me to the Neurologist that I'm currently seeing.  It's a drive well worth it (a little over an hour) because my Neurosurgeon didn't want me to see anyone in our city.  I don't think I would have gotten diagnosed as easy if I hadn't had my spinal surgeries....I'd still be at my previous GP complaining and not getting answers.  My first GP was not helpful or considerate.  He just sent me to the lab each time I had an appointment and would never schedule a follow-up to discuss the results or the next step to take.  I personally don't think he cared much. I always got the "you are too young" shrugg off. 

I understand how it feels to be in "limbo" and not taken seriously.  That adds more stress to know something's wrong but the doctor doesn't care to find it.

Gretchen1 thanks for the advice on the heartburn meds. I've gotten a RX for Nexium now for when I start the IV steroids. And yes, the gaunt of emotions flooded me and hasn't turned away yet. Before my diagnosis I told my husband that I needed a "crazy pill" b/c I had lost my mind - the crying without warning, the overwhelmed feelings, just down right depression.

Has anyone had/or having spasticity? If so how does this affect you & what is the best way to del with this that you have found? (I will be starting Zanaflex for this as soon as I get to the pharmacist to fill my RX) Just wondering if any meds have been successful in keeping this at bay.

I am very thankful that yall are on this website sharing your experiences and knowledge with me as well as others. Bless each of you. 

Thank you again,

PrayerWorks

Prayerworks,
So sorry to hear about your diagnosis. I too have MS, actually I have been diagnosed with having PPMS. I have my Neurologist here in Idaho Falls and he took his internship at Rush Hospital under Dr. Stefosky. I went to see Dr. Stefosky in Feb. 2008 and had some treatments done by him and then he released me back to my Neurologist here in Idaho. So, yes, I have both a neurologist and an MS Specialist that I work with. I do believe that the MS Specialist knows more but I am one of the lucky ones because my Neuro and my MS Specialist work together for me. Thank God that my Neuro has such a specialist that he can call anytime he needs to.
God Bless you.