Same diseases or not?

[kaypeeoh]

Several years ago I was dx'd with MS. I took tysabri, a monoclonal antibody treatment for two years. Then I was dx'd with PD and am still taking Rytary, a form of sinemet. My only symptom was olfactory hallucinations. This was smelling things that aren't real. I found that the false odors developed a few days before the tysabri treatment and stopped after the infusions. Then I developed a blood clot in my arm. I added meds for that. I found a doctor who treated clots with AHT, autohemotherapy. I found that worked better than the prescription meds. A few months ago the fake odors returned. I went back to the AHT treatments and the fake odors have stopped. I see one doctor for the PD and another for the MS and they don't talk to each other. How do I get the two doctors to connect?

[House2]

Make a list of your symptoms, have your MS doc review your MRI with you and tell you if the location of your lesions could explain your symptoms.

[Bolt_Upright]

Have you tried asking them to discuss your case? You explained it very well. Maybe you could give each the same letter with the other's contact information on it with a request to call the other?

Or, if you like the I Love Lucy method, you could invite each of them to meet you for dinner and surprise them when they both show up

[kaypeeoh in reply to Bolt_Upright]

I think the MS doc is happy that I don't have MS signs. The PD doc is happy that I don't have PD signs other than a minor vision problem. When seeing either of them the unspoken message is always, 'Dude, you could be a lot worse...'

[Smittybear7]

I've run into similar issues. Let me know if you find a solution. Good luck

[bibsie]

This is the first time I've seen olfactory hallucinations mentioned. My hwp has them frequently. He's lost most of his real sense of smell but is plagued by these totally incongruent periods of strange ans strong odors. They are not particularly noxious, just strong. His MDO is not remotely concerned. Do you know of anyone else who has experienced these?

[kaypeeoh in reply to bibsie]

An MRI shows leakage at the BBB. If the leakage is at the ventricle that's considered pathognomic for MS. The fake odor subsided after the tysabri infusions. One of the major symptoms in PD is loss of sense of smell. Smell and taste are the same thing as far as the brain knows. The pinkeye seems to be worsening. My wife took one look at my eye this AM and called the doctor. So I have an appointment tomorrow.