I am back with another Question.... - Multiple Sclerosis Message Board

Moldova · 06-23-2008, 08:24 AM

Hi everyone!
I wasn't posted for a while; but pain i leave in and all the tests I go through don't leave me much time to enjoy of communicating with you.

I would like to ask you: what is the difference between regular Neurologist and MS specialist? Isn't MS Dr is also Neurologist? My Neurologist takes care of MS patients too... Who are you all using?

I am in same "puzzled" stage. Now my PM Doc wants me to have spinal tab done. But due to my 2 spinal fusions Neurologist suggests that spinal fluid will be unclear, controversial and "no good". So what is the reason for me to go and risk my spine again? Or maybe I have to do it anyway despite the above concerns?

I see how rocky is the road to be diagnosed with MS and now I understand why it takes such long time to be diagnosed.
MY Rheumotologist told me that about 40% of MS diagnoses is not accurate. He said that in his RA magazines they have so many articles every year about this mysterious disease when so many people are diagnosed with MS actually never had it and they suffer after all with some other conditions.

This scares me so much! I don't want to take meds I don't need or to be misdiagnosed with MS while I may have some other problems...

Where is the answers?? So confused and so uncertain...

Thank you much in advance...

MSNik · 06-23-2008, 09:32 AM

Hi there Moldova...good to hear from you!
You asked what is the difference between an MS doc and a regular Neuro...there is a differnce, and YES, a MS doc is a Neurologist- however, he or she has had additional Special training in Multiple Sclerosis....an MS doc is qualified to both rule out or diagnos MS- and thats basically all they do.

A good Neuro, who has a large practice of MS patients is worth his weight in gold to us- and I use both- a regular Neuro and an MS Specialist...HOWEVER, what I get from the MS specialist which I NEVER get from the regular Neuro is the latest updates, the latest breakthroughs and most importantly someone who has seen it all, heard it all and knows it all when it comes to MS.

My regular Neuro has many MS patients, and I consider him one of the good guys...but, again, when I needed surgery back in January, and my GYN was stressed about both anesthesia and taking me off the birthcontrol pills, it was my MS SPecialist who was able to talk to my gyn and answer his questions....it was the MS Doc who was able to answer MY questions about what was going on with my body and whether or not it was MS related or just another medical issue..

There is a guy in New Brunswick- Robert Wood who is one of the most reknowned MS Specialists on the East Coast...his name is
Dr. Suhayl Dhib-Jalbut, they call him Dr. Jalbut...I use him as do many others in our area and I would highly recommend you give him a call and get a consult with him. He can answer all of your questions and will talk to you about the necessity of spinal taps, etc...he is also the chair of adult MS and Neurology, in his same office are other specialists who will give their opinon/insight to your past surgeries and what can/should be done in your special case....

Taking meds is scary...Ive often wondered if I am taking Rebif unnecessarily or what...I dont think I am, in fact, I have NO REASON to think I am- but deep down, especially when this disease is not active, and we feel good- I guess I keep hoping to find out that they were wrong...in my case, they cant be- its highly unlikely- I have over 50 lesions on my brain and all the symtoms of MS....but I do understand. I really do.
Get another opinon, it will make you feel better...
hugs
Nikki

Moldova · 06-23-2008, 12:30 PM

Nikky,
you are like an Angel for me today. I was crying many times last night and all day today: I am in so much pain and nothing helps and no way to find out what is the problem: seems like every DR is puzzled and no 100% someone can tell me that this is MS or not. I have so many other paiful issues because of my failed spinal fusions and as a result of surgery - Arachnoidities so I don't mind to take meds if I really need them. I know that MS pills are very strong and a lots of side effects may occure and I want to take them only if I know for sure I have it...
But how to know if I have every severe symptom of MS, but MRI did not show leasions? No thorasic or cervical either... How do I know?
Please, don't mine me and thank you for your time, but would you consider the following as signs of MS?

1/2 right side of my face is numb; legs, feet, arms and hands - numbness, pins and needles.
A lots of nerve pain all over.
Loss of balance.
Severe Vertigo: on and off since '06.
Optic Neurities with blurry and double vision.
Weakness of legs and arms.
Problem swallowing and horse voice.
Thinking or processing information problems (this is so not me)
A lots of pain in muscles; such bad stiffness
Tremors in right leg and right arm.
Bowel and Bladder issues.
Sensetivity to heat (hot weather makes me feel of passing out, throwing up).
Exhausting, not tired, but exhausting

This is what i remember.

Thank you so much for your post!!!!!

Canadian gal · 06-23-2008, 12:48 PM

Almost all of those symptoms would come from having Arachnoidities alone . . . and I guess that's the difficulty with dxing MS, especially if you have no brain lesions showing.

How was the ON dx? Was that confirmed?

Cherie

Moldova · 06-23-2008, 01:10 PM

Lady,
thank you so much for your respond... Yes ON was confirmed...

I agree with you; and that is why I am so devasted. I don't want to take pills if I don't have it, but how in a world would I know if good Drs are puzzled. I would honestly don't care much if it would be just dx, but I can't leave in so much pain anymore, I really suffer and nobody can find the reason except the spinal problems.
But my PM DR feels something else is going on, but what???

Take care and feel better!!!!