MS Specialist or Neurologist?

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PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/4/2009 1:45 AM (GMT -7)   
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.
 
 

Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/4/2009 10:34 AM (GMT -7)   

Hey Prayerworks

Welcome to the board! I"m so sorry to hear of u'r recent diagnosis, but very glad u've found us and are posting. The differences that i'm aware of between a neurologist and an ms specialist is only that the specialist is more experienced in treating ms patients. Most people don't see a specialist unless they are having some sort of particuliar issue or in an attempt to find a doc experienced in recognizing ms and becoming diagnosed. That aside, i wouldn't really recommend seeing a specialist over u'r neuro. U'r neuro seems to be good and u'r comfortable with him. He can diagnose...already has....and treat u'r symptoms. As long as u'r happy and being treated, then there's no reason to change docs...esp to one so far away. In fact....many people with ms see their neuro's a few times a years unless a problem arises and rely on their family doc for standard symptom treatment. As long as u'r fam doc and u'r neuro are able to communicate and will work together if needed, then that is very often an ideal situation.

This is a great community of people! Everyone here does such a great job of helping each other. I hope u'll feel comfortable here and will post as much as u like. We will do all we can to try to answer u'r questions. We have live chats on Monday's at 6:00pm central time. We'll post a reminder each week, including a break down of the times for each zone. I hope u'll be able to join us! Again, welcome to the board.


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/4/2009 1:16 PM (GMT -7)   

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
 
Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 3/4/2009 2:33 PM (GMT -7)   
Wednesday p.m.
 
Hello Prayer:
 
May I suggest you contact your state MS Society for a refferal to a neuro.  While your first neuro I am sure knows about MS, I feel VERY confident thatn my docs are on the forefront of everything.
 

MS is all my neuro does....as well as the other 14 neuros in his group.
 
They do not see patients with strokes, Alziemers or any other neurological problem.
 
Great luck to you.  And...I'll be praying  for you....
 
John
DX'ed June 21st, 1987
 


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 3/4/2009 2:36 PM (GMT -7)   
Hello Prayer:
 
I do not suppose you are from Detroit MI area, are you
 
John
DX'ed June 21st, 1987
 


PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/4/2009 3:41 PM (GMT -7)   

Hi Motown John

Thank you for your reply. I live in Georgia so I'm quite a distance from MI. From internet research there's only a few locations in my state that have an MS Specialist.  If I may ask, what were your initial symptoms and how did they diagnose you?  Are you currently on any MS therapy?

Thanks,

PrayerWorks


Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3205
   Posted 3/4/2009 5:56 PM (GMT -7)   
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.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 3/4/2009 6:45 PM (GMT -7)   
you are one lucky person to discover an understanding and knowledgeable doctor! i see a neuro who, like yours, keeps up on ms studies. before finding him, went thru about 3 or 4 other doctors who never tested me for ms despite symptoms. like you, my gp is also supportive in this. linda

Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 3/5/2009 7:59 AM (GMT -7)   
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
 
 
DX'ed June 21st, 1987
 


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/5/2009 8:17 AM (GMT -7)   
Hey P!!!!
If you are lucky enough, which it sounds like you have been blessed, to find a neuro you like/love, stay with that doc!!!! So many of us have not been so blessed. Knowledge is power so read everything you can get your hands on to make good informed decisions about your personal treatment plan. Be cool, stay calm and try not to get too overwhelmed. We are all here to help!!! smilewinkgrin :-) smilewinkgrin :-)

Take care,
Elizabeth
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/5/2009 5:29 PM (GMT -7)   
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
Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 


odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 3/6/2009 1:33 PM (GMT -7)   
ah, yes, wonderful spasticity! mine feels like someone or something is taking a vegetable peeler to part of my left thigh. then there's the feeling that toes are all trying to cross over each other. i'm taking baclofen 3x/day and it does seem to help relieve the symptoms or reduce the time i have it. especially good with active toes.

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 3/15/2009 8:05 PM (GMT -7)   
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.


 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

Post Edited (bohuck2) : 3/17/2009 1:18:18 PM (GMT-6)

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