Irony of MS diagnosis

[HVAC]

Before being diagnosed with Ms I thought once they found out what was wrong with me there would be a clear treatment. I thought I would gain all the answers. I thought I would have the support of the medical system.

So far since my diagnosis I have more questions than answers.

I really do not understand MS at all. I do not know what is MS and what is something else. My Neurologist wants everything to go through other Doctors first.

I spend every few months fighting with my pharmacy to get my DMD refilled.

Calling my Neurologists office for anything is a two week ordeal of phone tag. It takes me 8 months to get a 6 month follow up.

Every few months I have to resubmit for financial assistance for my DMD and they take months to process it so I do not have the assistance when I refill.

I thought Limbo took patience. It was just the beginning. My life has changed. I spend more effort trying to get basic treatment and stay patient.

I have learned to be nice on the phone even when I do not want to be. I am learning to be patient waiting and waiting and waiting.

What is MS a disease of infinite patience. Patience with yourself, the insurance industry, the health care system, and your families.

What would I like to give my friends on the Forum this New Years? The gift of patience. Things I though were dire yesterday seem silly a week or more later.

Alex

[jois]

This probably won't help but I don't have MS (my husband does) and I have the same problems with the medical system for my own health issues.

My husband Patrick speaks slowly so the clerical staff at one of his former doctors (not the doctors or nurses) all treated him like an idiot. They were downright abusive, like he had no right to live because he was so stupid or something. Grrrrr - made me livid. Patrick is one of the most sensible, sensitive, kind and gracious people that I've ever known.

So Patrick had the same problem (phone tag and followup apt problems) with that MS specialist that he was seeing in the beginning. After a while he got so stressed out about it that I convinced him to return to the neurologist that made his original diagnosis (Dr. A). Dr. A is not a specialist in MS but is an exceptional neurologist who truly seems to care about Patrick's progress. His staff has been really great. They make all the arrangements about his meds and test appointments - they return phone calls within 30 minutes usually. If they don't have an answer to a question they find out and call back shortly. Dr. A even gave me his cell phone number. Maybe you could find another neurologist? This stress is just not good for your immune system, but I'm sure you know that... sorry, I tend to be a mother hen.

Hang in there,

Jois

[Lulu54]

Alex, as always you put a lot of thought into this and it shows.  I do wish for you this next year a smoother road for all things in your life.  


As for your wish, this could be our new mantra around here....

Give me patience, and give it to me now!

be well,
Lulu

[rendean]

I do believe you have captured the essence of MS.. infinite patience.  Perhaps the goal of learning patience is to recognize what is really important and what is not. Just as you said, things that seem dire yesterday seem silly a week later.

Learning patience will be added to my New Year's resolutions.

Ren