Well now I have something

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Well now I have something

Postby MnRdunck » Sun Jan 28, 2018 8:58 am

I don't know if you remember my post on disappearing lesions but. My new problem is my left eye. It was the good one. My vision in that eye went out it was looking looking through goo only my eye was not dry so nothing in there. I could make out vague shapes and colors. That lasted for two days before vision returned. But I lost my peripheral vision, all most in it's entirety. It is like looking through a tube. I went to an opthamologist, who after seeing me referred me to a second one. He did more intense vision tests the map of what my left eye can see is crap, most of the printed part of what the exam looked like is black or dark gray it should be light gray. He wants to send me to a optic neurologist who agreed to see me at his very first available appointment 3 months from now. About all the two opthamologists could agree upon was physically the eye looks fine, and they think that it is neurological. My GP and neurologist tell me that it is optic neuritis and it would be a waste of time to drive 2½ hours away in 3 months to hear the same thing. 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.

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.
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Re: Well now I have something

Postby Scott1 » Mon Jan 29, 2018 5:15 am

Hi,

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?

Regards,
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Re: Well now I have something

Postby MnRdunck » Mon Jan 29, 2018 9:42 am

MS diagnosis was April 2016 but I just pretended it did not exist until October 7th 2017 when my first "Real" attack occurred. Then one in November and December. November was a 3 day hospital stay (these attacks go for 4-5 days but the hospital stopped it on day 3) While I was a patient there a neurologist came in and said I just was suffering from migraines. I have had these my whole life and trust me that was no migraine. So December comes the hospital turns me away as in their minds it is just migraines. The migraines they said I had my neuro diagnosis as trigeminal neuralgia. Now December 27th optical neuritis. But the hospital won't listen to my neuro as he is not affiliated. The infusions were to treat the optical neuritis.
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Re: Well now I have something

Postby Snoopy » Mon Jan 29, 2018 11:58 am

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.

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.


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.

Your story isn't making sense to me.
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Re: Well now I have something

Postby NHE » Mon Jan 29, 2018 6:11 pm

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.
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Re: Well now I have something

Postby Snoopy » Mon Jan 29, 2018 6:19 pm

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.
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Re: Well now I have something

Postby Scott1 » Tue Jan 30, 2018 2:42 am

Hi,

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?

Regards,
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Re: Well now I have something

Postby MnRdunck » Tue Jan 30, 2018 2:52 pm

The two opthamologists the only thing other than a printed messed up eye test was that they both agreed it was neurological. The optic neurologist will see me at his first available appointment in April. What I had written was the NEUROLOGIST and my GP (More so the neurologist) decided that I have optic neuritis.

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.
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Re: Well now I have something

Postby Scott1 » Thu Feb 01, 2018 2:08 am

Hi,

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.

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Re: Well now I have something

Postby MnRdunck » Fri Feb 02, 2018 6:51 am

I go to my family doctor on Tuesday, his nurse had called to see if I ever got the infusion, said something about a specialty pharmacy if that makes sense and the neuro they are trying to get me in with did his residency at Henry Ford Hospital which is a MS Center so hopefully he will be able to help me.
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Re: Well now I have something

Postby Scott1 » Fri Feb 02, 2018 12:32 pm

Hi,

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,
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