Wednesday, May 22, 2024

Neurological Dilemma & Frustration

So I found a doctor at U of Texas in Dallas that performs the Focused Ultrasound for people who have Essential Tremor or Parkinson's with Tremor.  I have contacted their coordinator in Texas and have requested my Neurological Medical Records to be sent to them.  But I also need a referral from my current Neurologist too before they can even set up an initial appointment.(This is a many step process to have the Focused Ultrasound procedure and at this point the initial appt. would be 3-4 weeks out from when they get the referral and the actual procedure is a YEAR out.  So needless to say, I am in a hurry to get this all going!)

My problem is with my current neurologist.  He is beyond unresponsive!  

Certain tests he ordered back on Jan. 31st were never done(3-were urine based and the lab didn't ask me for a urine specimen and 1 blood test came back that the sample they sent to the Mayo Clinic was insufficient to perform that test on my blood).  As of today, May 22nd, my neurologist has not submitted an order for these 4 tests to be done/redone.

Then I had 2 MRIs performed on March 16th.  I have had no feedback or contact from said neurologist as of today on these 2 MRI results.  I am assuming the results were ok but it would be calming to get any sort of call/text/note in the portal saying that's all ok.  Nada.

This Neurologist requested at the time of my Jan. 31st appointment that I be scheduled for a follow up appt. in 8-9 months from then.  The problem is that their scheduling system only goes 6 months out, so once I was 6 months within range from that appointment in Jan., I have messaged the department three times on three different occasions about scheduling an appointment.  As of today, no one in scheduling has responded to my requests. 

On April 5th I messaged through the patient portal that my Dermatologist at U of Mississippi needed my Neurological records as there was a possible issue we are pursuing in regards to her treatment of my HS and these records might hold some information needed.  I gave him her name, address, phone and fax # and guess what?  He never sent anything to her.  And I gave him ample time(appt. with Dermatologist was May 13th)so over a MONTH lead time and he couldn't take two minutes to respond-to send records or let me know what I needed to do to get those records to her?

Now I am waiting on a response from him in regard to the referral I need to be seen to Dallas to be a possible candidate for a Focused Ultrasound procedure.  Friday will be a week since I sent this latest request to him and I have had no response yet.  Of course, I figured I'd get push back on Focused Ultrasound from this department because NO DOCTOR IN LOUISIANA is licensed/trained to perform this procedure so it's not even on their radar as a treatment!!  But the least he could do is respond to ANY of my attempts to contact him.

So what do I do now?

I am so not happy that if I get that referral any time soon, it means I still have to live here for at least another YEAR+(I'd need to have a follow up 6 weeks after the procedure too).  If I ever get the referral and get to Dallas for appointments and testing, it may turn out I am not a candidate if my skull is too thick(as the ultrasound won't penetrate to my brain).  But I at least want the opportunity to try to go for it.

But if we don't pursue this in Dallas it means having to move/sell house/relocate somewhere there is another qualified surgeon who performs this procedure, find a neurologist(not easy to find one to take you on as a patient and may be months to find one and get an appointment)and then start the process all over again.  Leaving before we get on the schedule in Dallas would extend the time line for the procedure even longer. sigh

I am just so over the lack of communication with this neurologist and his laissez-faire attitude toward the treatment of my conditions.  It seems to be a recurring theme in Lousyana.....this "we'll get to it, when we feel like it" in businesses and medical practices.

I am so frustrated and low I just want to give up sometimes.  Not get the medications refilled and sit in a chair and shake so badly that I can't feed myself, write, or do anything productive.  I just need some good wishes and thoughts and for this horrible neurologist to at least send a referral.  I hate being on these drugs he prescribed me for ET and they don't work all the time and they make me so loopy.  Let's just drug her up and she won't bother us is how I feel that they are doing.



  1. Why don’t you relocate very soon to an area that has better medical coverage and what you need. You are unhappy where you are so I would get out asap when my health is at stake. Even back to Pa. Where you were have closer appropriate hospitals and medical care within the state.

  2. Good vibes and hugs are coming your way!


  3. Wow, what a $hit$how! I hope it works itself out, soon!

  4. I'm sending you all the extra resiliency and good thoughts I can.

  5. Probably the doctor knows little of this. It's his staff you need to blame. And you need to be a squeaky wheel. Even Lousyana has medical boards.

  6. Could you just go to the office and to talk to someone that could help? Melissa

  7. I am so very sorry you are dealing with this. Very frustrating.

  8. I’m so sorry you’re going through all this. Sending prayers your way. Sue in Minnesota

  9. Sending good thoughts and warm wishes. I hope things improve for you soon.

  10. I know or can imagine how sad, angry, neglected, and hopeless you feel at times.
    You should be getting better treatment. Can you complain to someone, somewhere? Can you imagine how people in lesser financial positions and lesser support are treated and how they do give up?
    Good thoughts are sent your way.

  11. Sending a hug and good wishes. The healthcare system is broken in many ways. I hope you get some answers soon.

  12. I'm sorry. I hope you can get some help soon. Sending lots of good thoughts

  13. Medical issues can be insanely frustrating. I'm so sorry your doctor is so non-responsive. I agree with others, if it takes moving to get quality medical care (particularly as you already don't enjoy where you are), I say go for it. Sending you good thoughts that you are able to find a solution & get help. (Hawaii Planner)

  14. Sending good wishes for better results in medical care. As I said before my husband is dealing with same issue. We just moved from pa to wv. So far drs we have technology is better then pa. We will meet with neurologist in June after being here 4 months. Family dr has kept him on meds til we meet neuro dr. Hope it goes well her reviews are not good praying for good results. May have to try and find another neuro if it does not go well, Yes are medical system is broken.

  15. I feel your pain. Here in Canada it's no better. Our son went through 18 months of misery with his seizures and a stubborn neurologist. He finally got another one in another area, and got things sorted. I am sending you virtual hugs, and just know I am thinking of you.

  16. Call his mama she'll go get a switch. He deserves it.

    1. LOLOL...Heather you made me laugh. Maybe I should get a switch.....

    2. I would recommend a two step process. First, Type up the history you shared here with us and send it to them registered receipt required mail, then make an in person appt. In the letter, I would request/require they provide dates where each outstanding item will be completed and at the bottom, do a cc (copy) to your attorney. Making sure that the attorneys name and function is quite legible at the bottom of the request letter. I wouldn’t threaten, just be business like. I assume that will send up some flares! If not, you need to get the heck out of that state, hilogene in Az

      If you don’t have an attorney, find out the name of the best medical attorney in your city, go pay them $500 for half hour of his/her time, and then send the letter. You need a big bat behind you. The law firm may not charge you just to use his name ;)

  17. I am beyond sorry you are being treated like this. Modern medicine has lost its humanity. I've worked in medicine all my life. All my friends are currently still working in the field.
    The horror stories they tell me are shocking. I have my own as well.
    I was recently hospitalized for a large painful kidney stone.
    I was transferred from the hospital to one in another city. I was left in the ER for most of the next day. I was npo
    because I was to go to the OR.
    I was left on a stretcher no water,no food and no IV fluid .
    No one came no matter how many times you hit the call light or yelled for help.
    I finally unhooked my cardiac monitor and BP cuff and climbed over the rail
    to go to the bathroom.
    I was heavily medicated and wandered around the halls out of it till an employee took me back to my room.
    They didn't hook me back up the the monitor they just left.
    I finally saw a doctor and told them I was leaving. I had been without any fluids for
    18 hours. You can not pass anyone without fluid.
    I left and went home took medicine,drank a ton of fluid and passed the stone.
    They were not going to help me.
    However they did submit a large bill
    To Medicare for my excellent care.
    Don't you give up. You advocate for yourself. Look for a support group.
    You can gain knowledge by asking others who are going through similar situations.
    I think hilogene gave excellent advice.
    Hang in there girlfriend.


Hey there! Thanks for leaving a comment.
All Anonymous commentors will be deleted.
Please include your name in your comment, or choose the 'Name' option and put your name or whatever you call yourself, in the box. Thank you.

Though I moderate it's partly to keep trolls at bay but also partly so that I read every comment. I don't often respond to comments so if you need me to answer you please write me at my email addy posted on my "About Me" page, linked on the side bar.