Doctors

Has anyone on here had a doctor(s) throw every test at them even after being diagnosed with MS? I want to manage my MS but I work a limited amount and have limited income. Navigating through being a good patient/what doctor says but also looking out for my best interest too. Looking for anyone who went through this/suggestions please.

[Cocoasmom]

Hi, My neurologist seems to be on the opposite end. I was just diagnosed in May in the hospital and started with a neurologist (my first ever) in July. I have seen him twice and was wondering what these appointments should look like? He has not done any type of exam or test beyond watching me kick my shoes off. I suspect it is because I'm a cash patient. So wondering is a neurological exam of any kind done or do they just talk to see if you notice symptoms like mine does???

He does agree with the diagnosis from hospital records and he has started me on rebif and will check my labs next month so maybe I am expecting too much?

[Hidden in reply to Cocoasmom]

Interesting..Ive always had exams done. I guess every doctor is different. I hope all continues to go well for you!

[CherieMSCN in reply to Cocoasmom]

Cocoasmom A brief neurological exam is generally always done with assessment of eye movement, spacial relations, walking ability, balance, sensation. Is this a general neurologist or an MS Center? If General, how many patients does he treat who have MS? If there is an MS Center nearby you might be better to establish a relationship there (just an opinion from working in this field for decades).

[cindyrn68 in reply to Cocoasmom]

My neurologist always does a neuro exam before we talk about symptoms, med regimen, etc...

[itasara in reply to Cocoasmom]

Did you get definite diagnosis of MS with an MRI? Is the blood test for seeing if you have antibodies to the Rebif? Otherwise I don't know what else he would be testing for unless you specifically ask for something like your vit. D levels or Calcium levels. I see my neurologist once a year so far. I don't get blood tests done, because I am on Copaxone. I do get bl. tests done via my internist but that is for an annual physical. when I see him, he does talk with me. e wants to know what meds and suppliments I am taking. He checks my eyes and mouth and does a blood pressure. He puts a vibrating tool on my toes to see if I can feel it. He askes me to walk up and down the hall. That is all I can recall at the moment. It should not have anything to do with how you pay him for your visits. A neurologist should always take the time to do a basic neurological exam. My opinion.

[Ashirva]

Sounds a bit like overkill, but maybe he/she just wants to make sure nothing is missed so that your treatment plan will offer you the best possible outcome. Or maybe it's a matter of CYA!

Have you talked with him/her about the cost of - and need for - these tests? Sometimes I think doctors don't realize what a financial burden tests and medications can be on us.

Good luck - let us know how it's going!

Anne

[Jesmcd2 CommunityAmbassador]

Hidden l have a tendency to ask why they want the test done then just say no. My docs don't like me much, but if l dont feel it's needed l refuse. I know my body better than they do. They kind of growl at me and my stubbornness

[Juleigh21]

I was diagnosed 2 years ago. I started on copaxone, then Tecfidera, and now on Tysabri. I haven't had a relapse since starting on Tysabri. My doctor moved 5 states away in the beginning of the summer. I've started with a new doc who is repeating every single test I had done 2 years ago. I'm having another lumbar puncture in 2 weeks. I'm hating this and think it's a waste of time and money. The new doc wants to be 100% sure that it's "just" MS. I don't want him taking me off Tysabri so I'm at his mercy. I'm back to teaching and finding it very difficult to work plus I've had shoulder surgery last week and have HR breathing down my neck about FMLA. The stress from the new doc and all these tests isn't helping my MS but I have to jump through the hoops to stay on the right treatment. If you're doing well I think you have to do what the doc wants😕. Good Luck

[Hidden in reply to Juleigh21]

Yup finding out new doctor means new tests. Even though I've already had tons of tests. Much compassion and understanding on the stress not helping your MS.

[itasara in reply to Juleigh21]

This really sounds nuts to me. If you have already been diagnosed with MS why do you need more LP's unless there is some question as to whether or not you really have MS. Those tests do come with some risk. Did you have a positive MRI that proved you have MS? Does he tell you why you need more LPs? I know that Tysabri needs to be monitored but I thought that was with a blood test. I wouldn't hesitate to get more specific information from him. Otherwise If you don't like what he tests you I would get another opinion.

[CherieMSCN]

Yes. I was diagnosed in 1994 at the Brigham based on history, exam and MRI. Found a local Neurologist who wanted evoked potentials, EMG and lumbar puncture and declared I did not have MS. Back to the Brigham with results of all and was told yes, you do have MS and these tests (Brain Stem evoked potentials and EMG) were inaccurately reported. They also did not do the correct testing on spinal fluid but checked for infection instead of oligoclonal bands and IGg.

Fast forward 20 years and I go for a second opinion on a treatment option and get new MRIs on brain C-Spine, T-Spine and 10 tubes of blood drawn and the new young doc says I may have been misdiagnosed but has no other diagnosis to offer. Missing a good portion of vision in my left eye due to several bouts of ON and have altered sensation in my left leg.

According to currently available statistics, about 4-5% of persons with MS (PWMS) do not have MRI evidence but they still have MS as is documented by history and physical exam.

[SepFromWisco]

Be thankful that you have a doctor that actually cares and wants to order tests to make sure you're all right. If it is really an income situation then that's a different story and you should express those concerns to him or her. But usually the labs charge the insurance so doctors are not making money off of this. I have the exact opposite problem. I have to ask for blood tests and have to remind my neurologist about regular check ups on my liver function and blood cells due to the medications. And if I bring up anything out of the ordinary he such as a test for inflammation he is on willing to do this unless absolutely necessary. But I have other doctors who order all the tests under the sun to measure how my vitamin levels are and rule out crazy other disorders whenever I am symptomatic. It's all about finding the right balance in between but I would definitely communicate your concern. But always nice to get the other perspective as well!

[Hidden in reply to SepFromWisco]

Yesss exactly!! All about balance. Grateful to have found a good doctor.

[itasara in reply to SepFromWisco]

It is also about finding the right doctor, and sometimes that isn't so easy to do!

[itasara]

You didn't mention what tests he wants to "throw" your way. I would be interested in knowing those exact ones. If you have already been confirmed to have MS, then I wouldn't think you need any other diagnostic tests. I am very wary of doctors who "overtest." It costs a lot of money for you, the insurance companies, etc. to have tests done that are not all that necessary. I also do not believe that MRI's need to be done as often as some neurologists recommend, but that depends on individual cases but not because an organization comes out with a general statement of how often and MS patient should get them done.

[Jesmcd2 CommunityAmbassador in reply to itasara]

Now my Neorolgost requires an MRI every time he sees me right now. But lm thinking that will calm down when the appts get farther apart. He dx'd me with just the mri also l never had the spinal tap. He said there was. No reason when the lesions were more than obvious. So lm not understanding if they find the lesions why do the tap that is so invasive?

[itasara in reply to Jesmcd2]

Your doc might find this article interesting. msdiscovery.org/news/news_s...

It is a little technical but some portions were rather interesting like: "“In a nutshell, MRI as it is used is not a good investment” for predicting outcomes, Daumer says. (Nor does it have value for monitoring patients, he says, as it adds little information beyond symptoms or relapses.) Advanced methods might be better, he says, but must be proven." and also "But right now, controversy persists about how helpful conventional MRI scans are in projecting disability. “When you look at the data in terms of what MRI is able to predict, it’s humbling,” Naismith says."

I don't know how often you get an MRI, but it could be overkill. It does say that i fa lot of lesions show up, it could mean the mendication is not working. But it there are no obvious disabilities one would think it is working, which is what my Neuro seems to operate on as he has not ordered an MRI in 11 years.

[Jesmcd2 CommunityAmbassador]

itasara it's my understanding that no one can predict the outcome of MS with a MRI or a spinal tap. Since l was dx'ed last March, my Dr. has done an MRI with a T3 or above to see how it's progressing. I have also had 2 exubations in that time. So it's progressing quickly. P.S. the article was interesting but was written almost 10 yrs ago.