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Avatar universal

Complicated eye issues, Multiple Myeloma,

Hi I have a complicated history.  I am 33.  a number of years ago developed foggy eye sight, especially noticeable at night,In the day i don't notice it so much.

After seeing about 5 eye doctors,all of them ophthalmologists, no one could tell me what was wrong.  I have congenital strabismus so I had two surgeries, some were blaming that, but the pediatric eye specialist said not, he did not know.  

I ended up seeing a neurologist because doctors thought it looked like MS, because of my many symptoms that included nerve symptoms frequent migraines and more.

I was finally diagnosed with Multiple Myeloma last year when I collapsed at work.

I have had chemo and a stem cell transplant and am in remission.

It was not until I saw my Myeloma Specialist at the cancer hospital here in Toronto Ontario, that she was able to tell me the eye problems were from something called Hyperviscocity Syndrome, a rare symptom of my cancer by my extremely elevated protein levels in my blood, which caused nerve damage in my eye.  She did not know if it would get better.

I still have the night vision problems, have been told I will most likely develop cataracts.

I am so tired of wearing glasses.  I wanted to have laser correction for my original issues of far sighted and astigmatism, but don't htink I'm a candidate now.

Have you ever treated the Hyperviscocity eye problems?  

I understand I have a rare cancer, and even rarer symptoms so no one has been able to help me.  I like my ophthalmologist but feel she is over her head, she also examined my eyes a number of times and could not find anything wrong before my diagnosis, even after my diagnosis told me flat out my cancer was not causing my eye problems, and prescribed me bifocals (which I did not get as I'm not ready for that at 33)

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Avatar universal
thank you for replying so quickly!  not the best news  but you have given me more information then any of the eye doctors or my cancer doctors combined. My last eye appointment they did a complete exam including pressure about a year ago and said everything was fine.

Now that I'm diagnosed and have had the stem cell transplant my protein is no longer so extreme and my blood is back to low normal ranges.  (well as much as can be with Multiple Myeloma) I get blood work every month. One problem was my blood was not quite a "4" on the viscosity test, so in theory you are not supposed to have symptoms, but I had many and took a long time to figure it out.
Helpful - 0
1573381 tn?1296147559
MEDICAL PROFESSIONAL
unfortunately this is a tough problem to treat.  The nerve gets damaged from lack of oxygen courtesy of the hyperviscosity syndrome and this is irreversible.  I have seen this in a couple of patients with different blood viscosity disorders.  you need to make sure your doctors are doing all they can to control the viscosity of your blood if possible to keep from further damage as what is lost can not be regained in nerve tissue.  You also should be fully examined by a glaucoma specialist to make sure there is no component of glaucoma present as that also leads to nerve damage and sometimes is present at the same time as other issues and could get missed.  I sometimes decrease eye pressure with drops even if there is no glaucoma with the thought that perfusion pressure in the eye may increase but there is no proof that this helps the blood flow to the nerve.  you may want to discuss this with your ophthalmologist.  Good luck.

HV
Helpful - 0

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