Feeling dismissed

[moonie747]

Because of dizziness and headaches, my PCP ordered a MRI of the brain 10 months ago,which showed lesions/hyperintense signals not in the "typical pattern/distribution of a demylenating disease". I saw a neurologist 5 months later, that said my symptoms were "rebound headaches" from overuse of Motrin. At the time, I had a (+) Romberg and pendular reflex of the knees.I was started on Topamax, and had a good reponse to short course of Prednisone . However,I reported other symptoms-tremors, weakness,tired, spasicity,etc., which he seemed dismissive of. (ex-urinary problems- "a lot of women have that"; muscle twitches? "eat a banana") I mentioned about tandem gait being very unsteady, and asked about the neuro exam. He seemed irritated-he stated that the tandem gait" means nothing" and asked if I was "going to nursing school."
Due to insurance change I had to get a new PCP, and switched to a neurologist (who was in the same practice as my other one) at the "Wellness Center" since they were closer to where I live and in the same building as each other. PCP ordered labs- B12, thyroid, electrolytes. All were ok, except for my Vitamin D, which was low at 15. I also was having daily sharp stabbing pain in my left jaw and ear and above my right eye, as well as back pain. (can't stand for long periods, stiffness, tingling , sunburned feeling). She was perplexed and said-
"I usually would refer people to a neurologist for all of these symptoms" and prescribed vitamin D.
So,finally saw the other neurologist ,who seemed suspcious of why I switched to him.They have electronic charts, so there was no hiding the fact I had seen someone else before him and was not Dr hopping. I made sure I told him that I notified the previous office staff and explained the switch.
  His exam lasted not even a minute.He tested by knee reflexes while my feet were planted on the floor, made me walk 6 feet, did the finger to nose test and the only time he physically touched me was to touch my arms to see if they felt the same on both sides.  He mentioned trigeminal neuralgia and ordered Tegretol.(He initially hesitated to treat the facial pain because it "wasn't that disruptive" to my daily routine??) The back pain, he felt ,would be helped by exercise. No further testing was ordered. I'm left thinking that maybe nothing is wrong with me, but my symptoms, bilateral trigeminal neuralgia, low Vitamin D, etc makes me wonder why at least another brain MRI-the last was 10 months ago-or a thoracic MRI wasn't ordered. I feel like the don't believe me....

[supermum_ms]

Hi and welcome to our little MS community,

hmmmm if id been asked why the switch, i would of said well the other neuro said i needed to eat a banana so i've been eating 10 bananas a day but i'm still twitching, I have even more pain than i had 10 months ago and now I can't stand the sight of bananas,.... (grrrr lol grrrr)

I honestly don't have an opinion regarding if it could be MS or not, there isn't enough that you've mentioned that is particularly suggestive imho of it being a neurological condition like MS over the many mimics. Off the top of my head i'd definitely be considering the more common spinal possibilities before thinking of MS.

Your story with neurologists unfortunately isn't as uncommon as it should be, i'm not sure finding another 'yet' would be the right move, i'd possibly consider following up with the PCP and requesting a referral to a physiotherapist because.......the neurologist mentioned my back pain would improve with exercise. By getting a thorough physiological assessment, it would potentially provide the proof, you so far haven't got, for what you're physically dealing with and indicate the need for further MRI's etc.

Cheers.........JJ    

[HVAC]

Is he seeing you again? If so he is not dissing you. You have to understand how neurologist think. They like to watch things over time like every six months. They are kinda like Sheldon Cooper on the big bang real brainy. They also specialize so if this is not a MS Specialist you may not get a MS diagnosis if it is MS. They can see a lot from a quick neurological exam. The exam is better than a MRI. They normally just do brain MRIs unless you have no head symptoms at all.  They do not like to be bombarded with questions or symptoms. Mine's rule is one symptom per appointment even when I was being diagnosed. . They also do know each other usually well. Like in our area the MS Specialist meet for lunch once a week.I had clear MS from my first appointment and it took 4 neurologists and two years for a diagnosis.

I thought I would be diagnosed and they would go to work fixing my symptoms. I see a neurologist once a year or more often if I have a problem. Most of what he does is farm me out to other specialists such as pain doctor or PT. Most of my symptoms I live with.

I went in with trouble walking he is sending me to PT. Another time he sent me to a pain specialist. A lot of MS problems are seen by other doctors.

Some neurologists do not like it if you know a lot.They also do not like emotion. Often by the time we get an appointment we are anxious and it all spills out. My PCP coached me before I saw a neurologist. But if you are really stuck and they are not listening try another. Doctors have to fit. I had a really bad oncologist. I changed hospitals and got the guy's mentor who worked at the other hospital. I never mentioned the first doctor but they talked. The second guy started treating me like I was nuts so I found another oncologist not connected to the first hospital. Now I am happy. The second guy is happy too.

It is good he is giving you Tegretol.

MS is a diagnosis of excluding all other conditions. It is not like cancer where you are diagnosed quickly. That is not always the case it too years to be diagnosed with cancer.

Alex