Nothing specific - just an update, and to say Hi

[Csativa]

I haven't been around for awhile.  Been too overwhelmed and fatigued – probably not unlike everyone else.  Really, I have not had much energy to do anything.  I know this is crude, but some days the fatigue is so bad, it takes a concerted effort to just break wind! LOL Well, this really is not far from the truth.

Saw my neurologist this past Tuesday (well, I assumed I was going to see another resident.)    The 4th year resident I was seeing and who dx'd me told me at my last appointment in June that she was transferring to the Cleveland Clinic for a few years and plans on returning the MS clinic in Rochester (If she does plan on returning, I can't wait – she is a “top-notch neurologist, to say the least.)

Anyway, because it was an expedited appointment, I ended up seeing the nurse practitioner.  As it turned out, things worked out very well.  She has been NP at the MS clinic in Rochester for 15 years.    Judging the way the appointment transpired, it is obvious that she is a tremendous wealth of knowledge  besides being a hell of a nice person.  

It's amazing how much difference just one appointment can make when dealing with a medical professional.  Everyone I've dealt with at the MS clinic at Univ. Rochester has been exceptional from the receptionist on up to the medical director who is my primary neurologist.

Anyway, for some bizarre reason, I had been thinking about transferring back to the neurology clinic at the medical university in Syracuse where I live.  The travel time really is not that bad, about three hours with a short break.  Unfortunately, my insurance company, great in every other respect, charges an extra $275.00 besides the copay because the clinic is not in my “network)  

I was told that the resident had left a note in my chart that she was concerned that I would transfer back to Syracuse.  She, the nurse practitioner and the attending have expressed concern that I may do just that.  I guess that from the written & oral history I presented as well as all the medical records from past medical providers made it pretty clear that the care I received was quite bad.  They were not only referring to the MS, but more so, the Neurofibromatosis which is more problematic at this point.

They weren't selling their own clinic, but they made it quite clear that I would receive better care there. It has been clear to me all along, so I guess I attribute the thoughts about transferring back to just being plain ole' stupid.

Although I have many troubling MS symptoms, I was told that the disease appears relatively stable at this time.  I do have days that are worse than others, however, there are no new lesions as of yet.   Another thing I was pleased with is that the NP said she is known as “The Symptom Lady.) LOL  While I am well aware that drugs are not the answer in treating multiple symptoms, if the quality of life is seriously compromised, which it seems to be, they can be of great help – I know, I'm preaching to the choir!

Because of the intense fatigue, the NP gave me prescriptions for Ritalin (improve focus), Provigil (fatigue), and Marinol (help with nausea/lack of appetite, helps reduce pain/ spasticity  from nerves misfiring)  The Ritalin and Marinol are working great so far.  I have not yet tried the provigil.  I want to talk to my GP first because I have high BP and Provigil can elevate it.

This was supposed to be a short note, so I'll keep quiet now.

[Csativa]

Hi Quix & Lulu,

Thanks.  At first, I thought I was being too long-winded, especially the piece concerning the breaking of such!  LOL.  On a more serious note though, I thought it might be beneficial in some way, to write about good experiences with medical professionals.  

All too often, we hear so much about how miserable our experiences with doctors can be, and at times, I certainly have been at the forefront of voicing just how bad those interactions can be, sometimes more than is necessary..  

I'm not trying to “toot my horn” so-to-speak, but I was hoping that someone just might be encouraged, however minimally, by the fact that the journey to diagnosis and treatment of MS, does not have to be made worse by medical professionals.  

And just a quick response re: nurse practitioners.  Regardless of the specialty, I have never had a bad experience with one.  I have always found them to be “great” as you say Lulu.  I have found NP's to be  very thorough, listen more closely, and devote more time to one's care.  I am not implying that they are better than doctors in these respects, but NP's are obviously in a whole different class and I am pleased with that fact.

Oh, one more thing Quix.  While I was given scripts for Ritalin and Provigil, I was instructed to take one or the other.  The Ritalin seems to be working well at this point.  While it does help with the fatigue, it has significantly improved my ability to maintain my focus.  I will probably try the Provigil soon just to see if it provides a marked improvement in treating the overwhelming fatigue.  

Once again, I am too long winded.  Wishing all the best!

Frank        

[Lulu54]

Your comment about the NP made me smile.  I saw the MS NP in July during my relapse and she was great.  She took a lot of time - close to 90 minutes - and did a thorough exam and sat and discussed all of my options in detail.  I would not hesitate to use her services again if I can't get in to see my neuro in a timely manner.

It's good to see you; keep us  in the know, ok?

best, Lulu

[Quixotic1]

Hi, and great to see you back.  Thank you for the indepth report on how you've been treated.  That is soooo useful for people to compare their experiences with.  It is important to know what good care looks like.  

I'm sorry about the fatigue, but I love your description.  Can I?  Should I?  Oh, fluck it!  Not worth the effort!

I have not heard of anyone on both Ritalin and Provigil.  They are both stimulants and many people here have had the Ritalin improve their fatigue also.  

Always good to see you.  Hope the new meds improve your quality of life.

Quix