Dear Dr. Kantor,
Something that has me perplexed since my diagnosis in Sept. 08 is the role of my neurologist in the my ongoing care. It seems that every doctor is only schooled in a particular area and the referrals are numerous.
Because so many of our symptoms may relate back to our MS, where does the Neurologist fit into the ongoing treatment of these symptoms or in trying to decide the cause of these symptoms?
My list of doctors includes my Primary Care Physician, Gastronenterologist, Cardiologist (I had a heart attack in January), a Urologist, Ear Nose and Throat Specialist, Opthamologist, and others. I can honestly say I like them all as physicians and feel fortunate about having a good rapport with them. I know most of our forum members also have numerous specialists and we tend to feel like a hot potato, being passed from doctor to doctor to doctor.
Is the Neurologist's role primarily to diagnose or should the neurologist be a partner in the ongoing care of the MS patient? Any guidelines you can share as an MS specialist will be helpful to us in defining our expectations of our neurologist.
Your primary care physician should be your manager for all your health needs and direct you to specialists when symptoms are beyond her.
You sshould have an open discussion with your neurologist about how your partnership is going to work. For example, when does your neurologist want a call back etc. Neurologists in the U.S. (as opposed to the U.K. where the neurologists are yearly consultants) generally do not only diagnose MS but manage it as well.
One of the hardest part of being an MS patient and an MS doctor is knowing what is due to MS and what is not.
And one of the hardest parts of being a new MS patient is understanding who to call to help me with all of these symptoms!
A typical scenario that happened to me recently and is still going on - I called the neurologist about a swallowing problem. Neuro said see the PCP. The PCP saw me, checked my thyroid and referred me on to GI doctor. GI doc says he can't look high enough in my throat so go see an ENT. ENT says nothing there that I can see, perhaps you need to talk to your MS neurologist. About the only doctor not involved in this circus was my urologist. At least I know for sure when I need to see the urologist!
So 5 or 6 appointments later I still have an undiagnosed problem.
I'll talk with my neuro next time in and see if we can further define the roles here.
1. In your own practice, when an MS patient reports swallowing difficulty, to whom do you refer the patient for testing?
2. What about a patient you are evaluating for possible MS?
3. Would documenting difficulty in swallowing help with the diagnosis?
(Background - being evaluated for MS since August 08. Bladder, bowel, balance, leg tingling issues, 4 juxtacortical lesions on MRI, many tests scheduled including LP.)
Like LuLu, I have had trouble swallowing: pills take 3 tries and still sometimes get stuck; food goes up sinuses. I called the neurologist in November; her nurse said to call the PCP; he referred me to GI for an upper endoscopy which will happen in February; but my sister, an OT, and my niece, a speech pathologist, wonder why I haven't been referred to speech pathology or for a barium swallow. The slow pace of the referrals is frustrating since the problem is daily. But tips from the forum and my relatives are helping (taking pills with yogurt instead of water, turning head towards the bad side while swallowing).
Thank you, and I know you have to be brief in your answers.
I did not know this is a loaded question. If there are instructions or guidelines for the expert forum, I have not seen them.
I do know that your practice is your own individual practice and not related to my own care. My question related to LuLu's; I was actually trying to help her get more of an answer since she had 5 or 6 appointments but not one to a speech and swallow therapist.
Thank you for answering 2/3 of my questions. I still don't know if it's worth pursuing clinical documentation of my swallowing problems since my practical issues have been solved (for now) by advice from friends and family.
I'm not looking for legal evidence. I already have a RRMS dx so that is not an issue. I actually like all of my doctors and believe they are doing a good job with my care.
I was trying to understand the chain of authority/command for the doctors when a neurologist and MS is involved. There has to be some sort of pecking order that I can't quite figure out yet. Which doctor should be hearing which problem ........... The neurologist's time is in high demand by everyone and I want to use the neuro's office appropriately.
Octarine - Now I would like the problem of being choked and unable to breathe (like a hand around my throat that cuts off all breathing/swallowing) to be resolved. All I did was use that as an example of who should be leading the search to resolve my problem. I am unclear as to who should take the lead - in the meantime on Monday I will have my umpteenth appt since September to try to find the source of this problem with the GI doc who is doing an acid monitor implant via an upper GI. I see my PCP Tuesday and we will once again be talking about this.
Yes, I have seen the MS neurologist, Cardiologist, PCP, ENT, GI doctors as well as the speech/swalloing evaluation specialist. I have had an upper gi, esophogeal motility test, ct scans, thyroid scan, HIDA scan, swallowing tests and cervical mri. It's a complicated choice - since I have stage 1 Barretts, but also have extensive cervical lesions- what's causing the throat spasms? The choices are MS or Acid Reflux/Gerds. I am on a proton pump inhibitior (prevacid) even though I don't feel any of the classic reflux pain or symptoms. And my diet is now the most boring one in the world - strict reflux diet since March, which I have pretty much followed faithfully. No coffee, carbonated beverages, juices, chocolate, tomato sauces, etc etc.
To add one more piece to this story - I had an MI in January, before I was diagnosed with MS - My MI is now officially listed as caused by vasospasm. The discomfort that sent me to the ER prior to my MI is exactly like I feel with this choking sensation. I have no coronary atery disease, no blockages, no high blood pressure. It was a spasm in my throat that led me to know that something was wrong. I had my MI while in the ER. Since then I have read the anecdotal reports written by medical doctors of MS spinal lesion spasms and coronary vasospasms reported by doctors. If this is what is going on with my spasms again I need to know so we can possibly avoid a possible repeat MI.
I don't expect an answer to all of this rambling - I just offer it to illuminate why I am appearing to be fixated with finding the cause of this problem.
Some, however, do not enjoy or feel comfortable dealing with complex neurologic diagnoses.
There is no such thing as a "pecking order."
This is why it is som important to speak to your doctors and ask them what they want you to do and how they see the relationship progressing. You also have to understand, however, that you have a complex history, and it sounds like your physicians are taking you very seriously and trying to setermine the cause of your symptoms.
I suggest maximizing your care in all domains, and that way you have done everything possible to ensure that your health is as good as possible.
Yes, all of my physicians are taking my symptoms seriously - this is a great team of doctors who are working agressively to find the answers before I have another major event. The neurologic disease of MS just throws such a kink in the whole diagnostic process ..... I sure wish it were simpler and could be done in more of a straight line than this circular process I am going through. thanks.
Legal action?! That wasn't on my mind. I'll own that my question was worded poorly.
One last try: I wanted to know if it was worth the considerable effort to keep navigating through my HMO on this swallowing issue, since I'm dealing with it fine through advice from friends and family. But if it would help with the diagnostic process for MS, I'd keep going.
To a doctor, it must seem like a no-brainer to investigate every avenue. But to this patient, every trip to the clinic is 2 - 4 hours out of a work day; a copay; exhaustion from the various TVs, noise, and crowds in the clinic; and often no answers but a referral for another day. I am grateful that I have health insurance, and that the neurologist is helping me tremendously. But I currently have 6 appointments coming up. My employer is unusually generous and flexible, but it's very hard to make up all the work I am missing. And of course I need the job to keep the health insurance. If it's NOT crucial to track down the cause of my swallowing problem, I'd be glad to let it slide until it gets worse.
And I also now realize that LuLu's situation is much more complicated and severe than mine. All I knew when I wrote was about the swallowing, which I thought I shared with her. Next time I won't jump into someone else's thread.
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