About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (31)

Fri, May 10 4:06pm · Autoimmune Retinopathy in Eye Conditions

I have appealed to BC, and Shands Clinic is appealing. Because it is an orphan disease, there are few studies, but the doctors believe that the treatment will slow or stop the destruction of my retina. I am losing color vision, have lost night vision, and in certain circumstances my vision is blurry. Since this condition can lead to blindness, I am extremely concerned.

Wed, May 8 11:04am · Autoimmune Retinopathy in Eye Conditions

After 14 months of visiting doctors, my eye condition was diagnosed as autoimmune retinopathy. Unfortunately, it is an orphan disease. The doctor recommended the only treatment available, but the insurance company refuses to cover the cost because it is off-label. Any suggestions? Am told that if the disease continues to progress I will be blind.

Jul 22, 2018 · Slow degradation of my vision. Seeing a retina specialist in Eye Conditions

A doctor friend of mine says that if you want good medical care, you have to fight for it. I have spent more than six months searching for a solution to my eye problems–finally found an ophthalmologist who acknowledged that I had a problem and made an appointment for me with a neuro opthalmologist. Now I must wait till Oct. but I feel he will be the one to solve the problem. Don't wait–your eyesight is so important. Find the right medical care.

Jul 14, 2018 · Living with Neuropathy - Welcome to the group in Neuropathy

Where are MGH and Oaklander located. Two incidents of cancer plus chemo and radiation probably caused my PN.

Apr 2, 2018 · Chronic dizziness and vestibular migraines in Ear, Nose & Throat (ENT)

Kim: am so sorry to hear of your problems. I also have been dealing with constant dizziness, but the only solution I have been given is to participate in PT to realign my ears and my eyes. I have a schwannoma, but the neurosurgeon says this is not the cause of the dizziness. I also feel normal only when I am sitting or lying down. I have lost night vision completely, so cannot go out after dark. Know that many people are thinking of you.

Jan 21, 2018 · Acoustic neuroma, hydrocephalis, and vertigo in Brain Tumor

Your response did make me laugh. Getting old is not for sissies! Thanks for your research on Meniere’s. My next stop will be to see a urologist who perhaps can untangle this puzzle.
The vertigo seems a bit less severe, but I’m not ready yet for a hike. And as for the federal government, perhaps we should lock them all up together until they can behave like adults and consider the welfare of their constituents and this country.

Jan 21, 2018 · Acoustic neuroma, hydrocephalis, and vertigo in Brain Tumor

Thanks for responding. I’m told the neurosurgeon who did the shunt surgery is tops in his field. My next visit will be to a urologist to get some ideas on the UTI and the connection to vertigo.

Jan 20, 2018 · Acoustic neuroma, hydrocephalis, and vertigo in Brain Tumor

Still dizzy, but I am able to walk around the yard with the dog. I don’t take any medications except vitamins and Advil; drink lots of water, am not anxious, do not have high blood pressure. Perhaps its age–I am 82 but have always been active. My father had Meniere’s Disease and had lost his hearing, but I don’t think that condition is inherited. Any suggestions?