physically and psychologically exhausted with my ms specialist

[johnniebear]

On Friday I had my six month F/U with the specialist,  my brain & C-spine MRI  was completed two weeks prior  to my visit with him.


From the first visit with him  years ago he  DX,    me  with RIS,  and said its  demyelination disease.  look at the reports that I have posted under my pictures.  At one visit he told me to read about DMD'S.

  
I  had two more episodes of Scleritis ,   he has a letter from the ophthalmologists saying its  autoimmune related.   I told him my balance continues to worsen, I fell last year at home and tore my rotator cuff and had surgery,  I  gave  him the report from the neuro surgeon that states my  disc aren't causing my balance issues.   I've had  those shocks everyone speaks of and he said can't separate those from the two herniated disc  in my cervical spine.. He was dismissive of any oddities I mentioned or any SX.


I pressed the Dr about DMD'S and asked what is my status in the McDonald criteria
He, said doesn't recommend DMD'S  because I don't  have DIT.    WTF..   (sorry if I offend anyone)
He told me I should  make and appointment to return in one year.   I will return only when pigs fly out of my butt will I return to  this expert.   EXPERT AT WHAT ?????

      
                               Years have been wasted with him..

The  reason I know DMD'S  should be offered is because of my  cognitive decline, my working memory is damaged and I now have  slower processing speed and other SX.



                               Lulu send this to me

COPENHAGEN – Patients who received early and consistent disease modifying treatment at the first signs of multiple sclerosis – often called clinically isolated syndrome (CIS) – appeared to have a slower progression to disability than patients who were treated mainly for additional MS exacerbations, researchers reported here


                   I also found this    Projects in Knowledge  Neurology

CI can occur early in the disease process.In a small, controlled, longitudinal study,  found that CI was present in approximately one third of MS patients with short disease duration (mean 2.9 ± 1.7 years) at trial initiation, and worsened in almost one third of these patients over a 3-year period

There also is evidence that CI is present in clinically isolated syndrome (CIS) and radiologically isolated syndromes (RIS) suggestive of MS.

CI can occur early in the disease process.25 In a small, controlled, longitudinal study, Amato et al found that CI was present in approximately one third of MS patients with short disease duration  years at trial initiation, and worsened in almost one third of these patients over a 3-year period.25

There also is evidence that CI is present in clinically isolated syndrome (CIS) and radiologically isolated syndromes (RIS) suggestive of MS. Feuillet et al26 reported that incidence of CI among 40 patients with CIS was high (57%), and restricted to memory, information processing speed, and executive function domains



So where do I go from here,   I'll get past the Holidays and hope to find a new Dr in the Chicago area.
Until then  I will help and support my fellow limbo landers when possible ..

This is the Multiple Sclerosis Community   so  we want to thank you  for your support over the years and knowledge my wife and I gained in invaluable,  and If its ok we will hang around  in your  Community unless you guys  kick us out  :-/)



take care  
JB

[Milliepede]

Hello, Johnnie.

I'm on my third neuro and my first appt with him was disappointing but FU was great. I'm glad we went after all.

So glad you've got appt with  someone else. Praying you get answers and needed treatment. Oh, but my first appt with new guy, he ordered new tests (some I hadn't had before) and Rx didn't happen until 2nd appt. He didn't want to go on others Dx. Was worth the wait as Rx for tecfidera is on it's way.

Blessings to you. Karen

[karryon55]

I'm glad you have decided move on & be reassessed by somebody else. I have never had anything bad happen on a Friday or the 13th & think that it is just a great day to start a fresh.

It gives you plenty of time to get all your MRI's & tests ready for the new Neuro. I pray that you get some answers finally now. It would be promising if he this new Neuro gets stuck in & does any testing necessary & is proactive about your need for some answers.

Take Care

Karry.

[johnniebear]

I have an appointment  with a fresh set of eyes  to take a look at me,

Sort of funny the appointment date is December 13,  so maybe this will good luck for me.   I hope   the frustration will finally  end after this visit, however after all these years my expectations are low.


Thank you everyone for your support

JB

[karryon55]

Hi JB, It's time to give up on this Neuro. You are only going to frustrate yourself if you keep giving him another chance. If you are getting worse then you need to find somebody sooner rather than later.

Good luck & Take care.....Karry.

[Guitar_grrrl]

JB!  I concur with the others, here!  Time to find a new neuro, and give this one the ol' heave-ho!

Every piece of MS literature coming out of the teaching hospitals these days points to DMD use even in CIS.  Too bad it takes forever for some neuros to get with the program. Grrr....

[supermum_ms]

Firstly, you are a valuable part of this community, so no more talk of leaving!!

You've been long over due for another opinion, preferably with someone up to date with the research and willing to dx based on 'all' the evidence, clinical and test evidence. Your sx's are progressing, the right neon sign may not be big enough for this neuro to recognise, but waiting is not helping you, so you are doing the right thing by you, in finding someone who will help get to the bottom of the dx and start treating you.

Good luck..........JJ    

[BOK2Bjan]

I think doctors who value what the patient has to say are rare. If when you first meet a doctor, he dismisses your comments without answering them directly - forget it. You're not being treated - your chart is. Dr House would be wonderful if he really existed (TV Dr who doesn't value pt but cares to solve case). Real drs usually only think about your case while your chart is in front of them. Try to get their attention with your comments and concern and see what happens. I've found that to be the best test of a good doctor.

They have to see the individual. We're all different and charts just don't tell the whole story. It frustrates me. Sometimes a patient who has done some research or, gasp, has an education in physiology - actually has something to add. We're not all nut cases lol.

[essdipity]

Johnnie, I agree. Ditch this aggravating so-and-so. There have to be quite a few really good MS neuros in the Chicago area, so get started finding him or her now.

ess

[kwarendorf]

Doctors are supposed to provide relief, not stress. Time to find a new doc!

Kyle

[PastorDan]

Grrrr!!!!  Pray, of course!!!

[PastorDan]

Meant to include:

At what point dies "specialist" become false advertising?  

Sorry you have to deal with this, John.  We'll foray you get what you need, and sooner than you expected.

[PastorDan]

I can't help but wonder about some so-called specialists.  He specializes in MS, cerebrovascular surgery, general neurology, TMJ, bait sales, and crocheted pillow cases!

[anon07072023]

Yeah, it sounds like he's giving you the run around.

You should qualify to be on a DMD based on your history, clinical, and your MRIs. I don't get it.  Why is he holding it back from you?  

I had to leave my initial neuro in order to get my diagnosis.  You get put into a box and they basically blow off everything that you say. You need a new set of eyes on you to see more clearly.  Maybe then you can get DMDs. Hopefully you can find a good MS specialist.

Sorry you had a crappy appt.