Hello. I am a 52 year old mother of three and grandmother of two. I was informed by my spine specialist that I have all the indicators of MS: positive cervical spine lesion, evidence of plaque on brain. He has been my doctor for over 4 years and did my last back surgery, a fusion of the lumbar spine. I returned to him over a month ago after having the most bizarre symptoms, numbness from left shoulder to finger tips and electric shock type pain in my neck. My doctor has referred me to a neurologist and the appointment is next week. I don't know anything about this neurologist except that he is also a Clinical neurophysiologist. My question is: if this does turn out to be MS, where do I find an MS specialist? How important is it that I go to one? At my age, what can I expect? I've been a athlete and a "I can do it myself" kind of person my entire life and I need to know what the future holds.
While I have been waiting for my appointment with the neurologist (three weeks) the numbness has spread to my entire left side and I have been having some significant nerve pain in my arm and leg and lastly, I'm weepy at the most unexpected times.
Any advice that would help me for the upcoming appointment would be greatly appreciated.
Your appointment next week should involve a complete physical exam and history as well as a review of your MRIs. Keep a symptom log and tell your doctor everything you've been experiencing. Be prepared for more testing; the neuro might order a lumbar puncture and evoked potentials. Since there are many conditions that share common symptoms with MS, you might undergo a lot more testing to rule out the possibilities.
It might take some time for the neuro to give you his/her opinion. If MS is suspected, you can ask the doctor how many MS cases he/she has treated to help you make a decision about seeking out a specialist.
It is always a good idea to seek a second opinion from an MS specialist if your neuro suspects MS. You can contact the National Multiple Sclerosis Society for a list of MS specialists in your area. Your neurologist might also be able to refer you to one.
I know this is a scary, frustrating time for you. If you do have MS, there is really no way to predict your disease course, we are all different. I developed MS at 41 and retired at 50. At 55, I use a cane and have had to simplify my life a great deal, but it isn't a bad life at all. We adjust. There are lots of drug therapies available that slow the disease process and treat our symptoms.
Please do let us know how that appointment goes, and come back often with your questions and concerns, we all understand what you're going through.
My sister also got her first indication of MS because of a back MRI. The ortho read the MRI and looked at her and said you never told me you had MS. Her answer was I don't but my brother has.
In my opinion an MS specialist or MS care center is a vital part of diagnosis and on going treatment. Not all neuro's are equal not even the specialists, so it can be difficult to find one you have a good relationship with which is also important.
As Kim says there is no saying how things will go if you are diagnosed but for now the important thing is to make a diagnosis or rule out MS all together. Assuming the latter (a big assumtpion) the next thing is a treatment plan for both your symptoms and disease management.
Stay in touch , vent when necessary, tell a joke when time are good .
Well, my appointment was today. I really liked the doctor and I think I can be satisfied working with him and his staff during the weeks, months and years ahead. He confirmed the diagnosis of MS, Relapsing-Remitting type. He agrees with me that my symptoms have been pointing to MS for at least 10 years but they always were attributed to other physical issues. After blood work, I am to go back in a short while so that we can talk about my treatment. He is recommending one of three DMD treatments: Copaxone, Rebif or Avonex. I'm reading through the material and it's a little overwhelming. My goal is to live as close to a normal life as possible -- for as long as possible. Life is good!
The drug choices can be overwhelming, for sure. Initially, I was given two choices: Copaxone or Rebif. I chose Copaxone because there was no chance of having the flu-like symptoms associated with the interferons (Avonex, Betaseron and Rebif). It is a daily subcutaneous injection, whereas Rebif is only three times a week.
Avonex now has a PEN alternative to the pre-filled syringe. You have the option of titrating the initial dose with the pre-filled syringe and then using the PEN, which has a much shorter needle. This once-a-week intramuscular injection, while one of the oldest of the therapies, is still very effective and popular.
You'll want to make your decision based on your lifestyle, your doctor's input, and your thoughts about dealing with the side effects of the interferons. No matter what you start with, you can always change to another therapy if you aren't happy with the drug.
Good luck, and please let us know what you decide.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.
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