familiar story

[lyndajoy]

I have the best medical insurance you can have.  It doesn't mean you will get the answers needed on something like this.

Your story sounds so familiar.  The doctors first said I had MS in the 1980s.  There is no question that I have something like MS, whether it has been "discovered with a name or not" as one doctor has told me.  More and more doctors say I have MS.  Several have me in their files as having MS.  My neurologist however refuses to document me with MS until he sees lesions on the MRI, regardless of symptoms, individual diagnoses (like 15 diagnoses that would fit under MS) or my history.  He has gotten so hard headed about it that the MRIs I had taken this month had a reason for taking them by him as "sensitive skin."  What???  He has a list of 20 MS symptoms and he puts down "sensitive skin" as the reason for my MRIs?  My other doctors shook their heads.  My other doctors are frustrated with him.  I am going downhill in my health and he refuses to see that; he doesn't live with me.  I am now at the point where I am being told by my other doctors that I need to go to John Hopkins or some place that will take the time to look at me as a whole person - history, symptoms and tests.  

Keep on going.  


This discussion is related to Desperate for answers.

[lyndajoy]

Thanks for the responses.  I had a reevaluation at the regional rehabilitation hospital with the physical therapists.  They couldn't believe how bad my left leg is and that they can't believe I can even walk.  I had the EMG the next day and one of the tests was abnormal, but again, the neuro said he doesn't agree with the test guidelines and said he calls it normal.  The technician had written down I have neuropathy and he said not to write that down, he didn't agree with the standards.

He and I had another serious talk and after I countered each thing he said and told him I was tired of all of this.  One of his comments was that I should get an internal medicine doctor that would review everything and tell me what he thinks.  I told him I had done that for the past 8 years and he kept saying MS, and that when I told him that he didn't agree.  He agreed he was going to refer me to a regional MS clinic at a university.  So now, I have three different referrals and I will see what happens.

[Erin0313]

Lynda,

   I think all hands are up to vote yes to a new neuro for you! Sensitive skin, really???
What an idiot. With all you have and he chooses to put that on the MRI, lol.

There are lots of choices to pick from on where to go but if your other doctors are actually saying Johns Hopkins then I think that you should call that doctor and ask them to give you a referral. You said you have the best health insurance so you probably don't need it to get in but I bet you will get in faster if the doctor makes a call for you.

Good luck with whatever you decide (new neuro, new neuro, new neuro) lol!
Hugs,
Erin :)

[Sarahsmom46]

Have you considered going to the NIH? They have a clinical study on people with "possible" MS.  Richmond is a ways from Bethesda but so is Hopkins and the NIH won't cost you a penny.

If you are interested you can google it or send me a PM and I'll get you the phone number to call them.  

Hope this is helpful.

Julie

[Audrey_M]

Welcome.

It's good to know you understand this is a familiar story. I just wish that it did not happen as much as it did.

We probably should put together a "Warning Signs That Its Time To Find A New Neuro" and save people needless frustration, humiliation, money, time and delayed diagnosis.

Don't know how long you've been seeing your current neuro, or how many doctors are encouraging you to change neuros. One thing to seriously consider is asking your doctors if they have someone specific in mind that they recommend and why.

I asked my PCP and she recommended Yale New Haven Hospital, but did not have a name, as there is turnover, which did not sit well with me. My ENT recommended several docs based on competence and the quality of doctor/patient relationship, which he considers all important (he was so emphatic about that and showed genuine concern; I guess he understands the neuro profession well and was trying to warn me in advance- LOL).

I have ended up with someone who for the time being has demonstrated those qualities during my short time under her care.

To sum it up, I hope that you get some sound guidance in terms of a referral and are not left to your own devices so that you don't waste more precious time in getting the proper diagnosis/treatment.

Good luck,

Audrey

[Deb61]

You are more than overdue to make a trip to John Hopkins or another well-respected place.  I hope you make the appointment ASAP!  You need answers after 20 years of suffering and some hope for treatment.  You need in the least a glimmer of HOPE again!  I know what you're going through.  It took me many years for a diagnosis.  Mostly, because I was seeing the wrong specialist.  You do deserve someone that will look at the whole you.  

Keep us posted!
Debbie

[figuerpa]

I think it is time you look for another neuro that will look at the whole picture instead of just the MRI if all of your other doctors are saying MS then it is time to go to another doctor and see what his/her opinion is.

Good luck
Paula