My Neorologist was upset when I asked why the slice thickness was 6.5mm on my MRI that was supposed to be done with MS protocol. He asked me if I am a doctor, why come to him ? He sent me for an LP and VEP and SSEP next week, but my husband wants me to see another doctor and I agree. However, if I go, I will like to see a MS specialist, and if I google some names come up, but when I look them up, I see that they are specialized in sleep disorders or other things, not MS. So if anybody here is from NC ( I live close to Raleigh) and has a good MS doctor, I would appreciate if you will share his/her name.
Here you are limited to Skeen at Duke who is super busy. I am not sure if he is taking patients. Goetzl in Durham at Raliegh Neurology, he wants to retire but has no one to replace him. Friedman in Raleigh at Raleigh Neurology main office. I can't remember the female Doctor at UNC's name. She is research oriented and if you do not fit her research you will see her PA. People either like her or they think she is brusque. The deal is we have dedicated MS Specialists but too few. I figure the ratio is about 4 or 5 MS Specialists to over 5,000 diagnosed MS patients and 5,000 in the process of being diagnosed. We lost the one in Wilmington so they cover from here to the coast. It took me 8 months to get in with Skeen and I was diagnosed. Ironically that was less time then a follow up with my Specialist at the time Goetzl. Few Doctors want to become MS Specialists. Basically as we lose MS Specialists in this area of NC there is no one to replace them.
Sometimes you get lucky and get in sooner. I was sent to a neurologist by my GP when she did a neurological exam with my annual exam, reflexes and such and she saw I had no signals going to the left side of my body. That Neurologist was looking for two other lethal conditions and did an MRI and said I had MS instead. He was leaving and sent me to a Neurologist who specialized in headaches. All the tests she sent me for pointed to MS but she said I did not have MS. She sent me to a Neuro Opthamologist and that Doctor said I would be diagnosed with MS at some point. My GP then sent me to Goetzl a MS Specialist. He took two years to do the LP but once I had the LP he diagnosed me with MS. If it had been negative he would not have diagnosed me.
If it were me I would have the LP, VEP, and SSEP. and you can make an appointment with a MS Specialist and take the tests with you when you have a consult.
I have learned how Neurologists work. First off a diagnosis is rarely quick. They usually follow you over time. Usually every six months to see changes. Second MRIs show them very little. They find out where damage is by the Neurological exam. What seems silly to me. Reflexes, walking, standing with your eyes closed etc. For me when I was very little in the 1960's they knew I had damage to my brain stem. I have had MS since the age of two, they did not think children got MS in those days. Third they are busy so you have to make the most of an exam. Let them do their thing with out interuption. Have all your tests with you. I have a complete folder with cd's of my MRIs. I tell a white lie to my Neurologists I tell them I am traveling to Europe for an extended time and want a copy of all my records in case I need them. Or I get them from my GP. I get the CD from the imaging place. Also have a one page concise time line of symptoms. More than one page is too lengthy. Forth I do not discuss previous Neurologists. I give the Neurologist their notes and let them make up their minds. It is a tight community, plus you do not want to waste time in the appointment. Fifth try not to get emotional. Especially if you are a woman if you get emotional they attribute your symptoms to stress or psychiatric.
MS is a diagnosis of excluding all possibilities. There are many neurological disorders and about 30 mimics. I was told I "would be diagnosed with MS" by a bunch of Neurologists for years which confused me. The way Neurologists think is you do not have MS until they decide you do. There are no tests which prove MS they only help a Neurologist figure it out. My first MRI was not MS protocol, he was looking for two other conditions but it showed MS. Four Neurologists looking at it said it looked like MS. After a positive VEP I was sent to a Neuro Opthamologist who said looking at that MRI I would be diagnosed with MS one day. After my LP was abnormal I was tested for Lupus and a bunch of other illnesses. Then I was diagnosed with MS.
I know it is confusing, frustrating, and down right maddening. It is great your husband is involved.
I will take your advice and go on to the LP and VEP and SSEP this week and I will ask them to mail a copy of the results to my home address as well.
I was tested for Lupus, thyroid levels, diabetes. All my symptoms are neurological and my Familly Doctor as well as my Ophtalmologist think I have MS. I do not know, tell you the truth, after 3 years of this stuff, i just want to know what it is so I can have a treatment to help me.
I cannot thank you enough for sharing the specialists list with me.
I am so sorry you have been having this issue for so long. I think in the future it will seem crazy it takes this long for a diagnosis. I would still try to get into a MS Specialist probably Raleigh Neurology since they are the biggest practice in the area. You would think Duke and UNC would have more Doctors. Duke's Specialty in Research is Parkinson's. UNC does a lot of MS research. Like I said they only have the one Doctor who sees patients.
All the blood tests are normal for ruling out other MS mimics You would have had them all with a MS Specialist.
Ironically I had gone to Neurologists my whole childhood and my parents had not really told me much. My diagnosis from first trip to the Mayo Clinic in 1965 took until 2009. I grew up thinking double vision, vertigo, left side weakness, and bad head aches we something everyone had. When my Primary Care doctor told me what I was experiencing was not normal I thought she was nuts. I am sure yours diagnosis be quicker than mine. We have many folks on the forum it took years for. I know that is little comfort.
I am doing well since diagnosis. I still get most of my care from my Primary. I have learned to live with this disease. I started horse back riding for therapy. I was dog trainer so I trained a Service Dog, Polly. So if you see a Dalmatian Service Dog out and about that is us.
I am here for you for any reason if you ever want to Private Message me. You are not alone. The great thing about the forum is we are open 24/7. I have gotten on in the middle of the night just to say I am in pain and someone responded.
I have been going to Raleigh Neuro for 4 years. Saw Freedman maybe twice. PA rest of time. Went through horrible auto accident. PA and my Neurophycologist put me in UNC. Lost 50 lbs. forgot to eat! Accident fried my brain. Went back to Raleigh Neuro for appt with Freedman and he found no records on me, he freaked out. He never saw me again or heard from him for follow up and told my Attnys. Car Accidents DO NOT cause relapses! I need a new Dr. I was sad about it all!
I was diagnosed diagnosed with MS three years ago in the NYC area. I had multiple MS treatment centers at teaching hospitals to chose from and tried three doctors before I settled on the one I see today at the UMDNJ center in New Brunswick, NJ.
My husband and I moved to Raleigh earlier this year as part of a transfer for his job. I did alot of research, involved my NJ doctor and the local MS Society chapter in my area in NJ and discovered how limited care is in the Raleigh area. We decided together, that due to the frequency of care at this stage of my MS (every 6 months as described by another responder) I would be best suited to continue my treatment in NJ or travel to to the MS treatment center in Charlotte. Since MS comes with a variety of symptoms and conditions I also need to add a local neurologist to my lineup of doctors to ensure I get care when I need it.
It is always best practice, as i found out from switching doctors three times over three years, to keep copies of your records on you so you can share with other health professionals. I like the care I get at the treatment centers and feel that these centers see the most patients, have the most experience with the disease and are the most up to date in terms of treatments and advancements.
I have family in NJ and travel back there for work from time to time. I realize that not everyone can travel long distances for care but it is worth looking into. For now I will keep my specialist in NJ, research for a local neurologist that I can go to if something comes up in between appointments. It is worth retaining as many doctors as is feasible to ensure you get the best care for your condition.
The MS Society website has alot of useful information and their hotline will put you in touch with a health advocate that can help you make decisions on your care. I receive newsletters from them and have even joined their learning sessions and conference calls on various health topics.
Hope this helps. Everyone's needs and experiences are different but just thought I'd share mine to see if helps you.
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