Has anyone ever been dx 'd with MS, only to be told a few years later by another neuro, that you have something else?
I was really relieved, 5 years ago, to have ANY kind of dx. I just wanted to know what was wrong you haveth me. The MS specialist actually told me it was " anxiety." The very first neuro I had seen told me I had "migraines." It took so long to get a believable dx, that I had progressed from paresthesia and spasticity to myoclonic jerks, cog fog, and foot drop. I had been using a rollator for 3 years.
Yesterday, the new neurologist (my former one took on a role of training interns) told me that I actually don't have MS. He said that the MRIs I have had over the past few years haven't shown any changes. He told me that I actually have ADEM. I forgot what it stands for, but at least he acknowledged that I do have something wrong and that we must treat the symptoms. I think it stood for acute disseminating monophasic "encephalomyelitis."
On the one hand, I am glad to not have to go back on any DMDs. On the other hand, I had a VERY good neuro who had previously dx ' d me. The MS nurse, at the time, said that if (my former neuro) said "you have MS, you have MS."
I have a difficult time with a different neuro at the same hospital contradicting the dx of another neuro
I was really relieved, 5 years ago, to have ANY kind of dx. I just wanted to know what was wrong you haveth me. The MS specialist actually told me it was " anxiety." The very first neuro I had seen told me I had "migraines." It took so long to get a believable dx, that I had progressed from paresthesia and spasticity to myoclonic jerks, cog fog, and foot drop. I had been using a rollator for 3 years.
Yesterday, the new neurologist (my former one took on a role of training interns) told me that I actually don't have MS. He said that the MRIs I have had over the past few years haven't shown any changes. He told me that I actually have ADEM. I forgot what it stands for, but at least he acknowledged that I do have something wrong and that we must treat the symptoms. I think it stood for acute disseminating monophasic "encephalomyelitis."
On the one hand, I am glad to not have to go back on any DMDs. On the other hand, I had a VERY good neuro who had previously dx ' d me. The MS nurse, at the time, said that if (my former neuro) said "you have MS, you have MS."
I have a difficult time with a different neuro at the same hospital contradicting the dx of another neuro
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