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fanatical liberal
New Member

Date Joined Mar 2009
Total Posts : 2
   Posted 3/10/2009 8:06 PM (GMT -6)   
I was diagnosed 5 years ago, but over the past 6-8 months, the pain has gotten significantly worse! My entire body hurts! I can deal with all the "normal" MS stuff, but the pain - on top of of the pins and needles, double vision, inability to form thoughts - is driving me absolutely bonkers!! My neuro is quite condescending and tells me that the pain and the fogginess is all a figment of my imagination. He told me to drink some hot tea and take a tylenol. It's not like I'm asking for mind altering narcotics...maybe even Lyrica to start??!! The most unfortunate part is that there is not another neuro within 100 miles who accepts my insurance. This is so very frustrating...anyone else have a terrible neurologist? (or a suggestion??)

Post Edited By Moderator (Gretchen1) : 3/19/2009 2:00:06 PM (GMT-6)

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 3/11/2009 8:28 AM (GMT -6)   

I travel two hours to see my neuro.  She is the best I can find and I am thrilled with her.  I would suggest that you find a new neuro.  Like I have said before, it is a consumer market for doctors/medicine.  Make sure you are happy with what you purchase.

I am sorry to hear of your pain.  I hope you are feeling better real soon.  Nerve pain is real and tea might taste good but it won't do much for that pain.

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.

Regular Member

Date Joined Aug 2004
Total Posts : 274
   Posted 3/11/2009 8:59 AM (GMT -6)   
went thru 3 or 4 local neuros until i got fed up and asked my gp for a referral. now i travel an hour by train, but very glad i do.

you might contact your local ms chapter for some help on this. they hopefully will have some suggestions and referrals to help you. they are there for you. linda

healing spirit
Regular Member

Date Joined Mar 2008
Total Posts : 177
   Posted 3/12/2009 8:30 AM (GMT -6)   

I also switched Neuro's and have a wonderful doctor now.  She has put me on Cymbalta for my neuropathic pain which consists of burning in my feet so bad that I can't wear shoes or socks some days.  It has helped take the edge off.  I am so sorry about your pain.  I agree that you need to find a new doctor.  Good luck.


New Member

Date Joined Mar 2009
Total Posts : 3
   Posted 3/19/2009 2:48 PM (GMT -6)   
I was diagnosed with probable RRMS a year ago. I suffer from burning and tingling sensations in my hands and feet and my neuro put me on Gabbapentin/Neurontin. It really helped but now I am off of it because I am trying to get pregnant. I would definately go to another neuro. One who will really sit down and listen to you. I hope you feel better soon.


Regular Member

Date Joined Aug 2008
Total Posts : 271
   Posted 3/23/2009 2:12 AM (GMT -6)   
I feel for you. The pain is terrible I know. Those pins & needles feel like being jabbed with hundreds of real ones. I also got no joy from 3 different neuros, my GP was more helpful & we tried gabbapentin, lyrica. I gather neuropathic pain does not respond well.

Finally, after years of escalating pain, beyond 10/10, so bad I did not know how to keep going I got a baclofen pump. Now for the first time in 12 years I am totally painfree & its is bliss. I still do not have a neuro because I get my refills through a pain clinic.

I think Linda's suggestion is a good one. I would happily travel if I could find a good neuro the thing is they have to know about MS the only one I have seen recently specialises in Parkinsons & does not know enough about MS.

Hang in there.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream

New Member

Date Joined Mar 2009
Total Posts : 3
   Posted 3/23/2009 12:08 PM (GMT -6)   
You need to find a new doctor immediately. My Mother-in-law Colleen lost muscle reflex in her right leg/knee about 2 1/2 years ago and was diagnosed with MS last year. The doctor she went to basically treat her the same way your doctor is treating you. Most doctors do not have the knowledge to treat MS because it is such a strange disease.
I was at a business luncheon in the fall of last year and met Alice Brown, the Founder and Inventor for a Company called In the Groove and because of this meeting Colleen's quality of life has greatly improved. Alice has two daughter with MS and has become an expert on MS. The first thing Alice told me is to find a neurologist who is proactive in the treatment of MS and has a large percentage of patients with MS. It is about a 2 1/2 hour drive to the new neurologist but it is well worth it. Contact organizations that deal with MS in your area and ask for recommendations. If you are in Michigan let me know and I will give you the information on the doctor Colleen is going to.
Also, if you are have problems with your knees and are in pain I have another suggestion. As I said, Colleen lost muscle reflex in her right leg. Her leg would drag behind when she was walking, she had to manual lift her leg to get in her van and manually move her leg to get it where she wanted it. Now the pain in her knee is gone and she is gaining control of the muscles in her right knee to the point she can cross her right leg over her left knee without doing it manually. The reason for the improvement is a knee orthosis/brace invented and created by Alice Brown, the founder of In the Groove. 
The orthosis/brace realigns the upper and lower leg and rebuild and retrains the muscles of the knee. I can't tell you enough good things about the knee orthosis/brace. It has helped Colleen so much she gave a video testimonial that is on the In the Groove website. If you would like to check it out go to the website:

Motown John
Regular Member

Date Joined Jun 2005
Total Posts : 475
   Posted 3/26/2009 6:33 AM (GMT -6) is one more suggestion to find a new neuro....
Maybe call your insurance company with problem?  "yea, you are right....when they stop laughing...."
But you are is not fair.... make some hot tea, eh?
DX'ed June 21st, 1987

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