In the mean time I have started my Betaseron. Jumped through hoops for that. I am so fed up with my neuro, my GP is finally helping me move on there.
Sorry, I'm a little confused. Are you taking betaseron because you have been diagnosed with a condition ? What is that condition? Usually it is for MS but I'm not sure you are saying you have that diagnosis. Is that right? Who wrote the prescription and what did he say he was treating?
What would the infusions be ? 2 hours a day for 3 days isn't really that much out of a hospital schedule so I'm a bit lost following what the hospitals logic is for saying they don't want to do that.
You've posted in the undiagnosed section. Is that the right category?
About all the two opthamologists could agree upon was physically the eye looks fine,
If you had Optic Neuritis(ON) your Ophthalmologists would have been able to determine your vision problem as Optic Neuritis.
Your GP would not be able to diagnose ON and in the majority of cases a Neurologist will refer their patients to an Ophthalmologist or Neuro-Ophthalmologist to determine if a patient has ON. A MRI can also be used to detect ON.
The treatment for ON is 3 to 5 days of IV steroids which can be done within your home. If your Ophthalmologists determined you had ON they could have ordered the in home IV steroids. This is also true in the case of your Neurologist. It's uncommon to have high dose steroids in the hospital unless the person is unable to move.In the mean time it has turned into one big cluster and the hospital does not want to do the infusions especially because I would be there 2 hours a day for 3 days.
Your story isn't making sense to me.
I've had IV methylprednisolone for ON at an outpatient infusion center. This was the type of facility that's also used for chemo treatments.Snoopy wrote: The treatment for ON is 3 to 5 days of IV steroids which can be done within your home. If your Ophthalmologists determined you had ON they could have ordered the in home IV steroids. This is also true in the case of your Neurologist. It's uncommon to have high dose steroids in the hospital unless the person is unable to move.
I've had IV methylprednisolone for ON at an outpatient infusion center. This was the type of facility that's also used for chemo treatments.
NHE you are correct. Infusion Centers are also used for some of the DMDs/DMTs. My Neurology Office has their own in of Infusion Center. That doesn't sound like what MnRdunck is referring to.
I think why we are confused is the way you have been treated is a little unusual. The relationship between the hospital and the neurologist is also unusual. Which practitioner are you relying on? The GP or the neurologist or another?
What happened to you when you were diagnosed in 2016? Is the same neurologist treating you now?
I was given a copy of the eye exam to take to the optic neurologist. Looking at the 4 pages of what they printed out of what my eyes can see, the right one well that was normal all light grays in the shape of my eye. The left one was all dark gray and black. The test was looking forwards at a light with tiny flashing lights that you clicked a button when you saw them. The left eye missed 78%.
And as far as the infusions the neurologist wrote that down on a prescription pad and told me to take it to the hospital. I have now left him and have a month before the new one sees me.
With the best will, I think you are probably wise to wait for the new neurologist. What's happened to you sounds confusing even when you have explained it. Even if the neurologist is right, he has left you confused and uncertain. He is relying on you to know how to deal with the hospital when that's his responsibility.
I'm from a different country so I'm not familiar with what a specialty pharmacy actually is but I can guess. I don't know the Henry Ford Hospital but it sounds like a step in the right direction. Plenty here have gone down similar paths. What ever they do, someone here will have trod the path already so they can share experiences with you.
Good luck and regards,