Waldenstrom's Macroglobulinemia and vision problems

Conclusion: Shows you can have enlarged veins that can hemmorhage at SV as low as 2.02 and IgM of 1900 even though the literature says people don't get symptoms until they reach SV of 4. In fact, it appears that by the time you are SV4, it's almost guaranteed you have vision problems! When reduced (e.g., below 2.2), vision returns to normal. See a doctor asap. disregarding can lead to blindness. Each person is different. Even if the tests show nothing, you could have blurred vision (see Salvitti post below). You can have IgM as low as 1850 that affect your vision (if the igm attacks your eyes).

At least two people with blurring upon examination showed no sausaging. In one, upon PP, vision and brain function were restored. So WE are more sensitive than the tests!

In my case, I had SV 2.9 and IgM of 4,000. Blurry vision at times in right eye. Eye exam did show a small drop of blood in peripheral vein in the eye which isn't normal and suggests a viscosity problem that is damaging blood vessels. The peripheral ones are the most sensitive.

Maureen Hanley

Noticing a slight blurriness of vision in one eye can be caused by a host of different problems. With an IGM of 4,000 one should have a dilated eye examination at least twice a year. I coincidentally saw a patient today whose IGM was 4930 whose eyes were fine but some can have problems at this level. The problem is you can have WM in the eye and have no symptoms unless the hemorrhages are along the visual axis. Many times the first sign is dilated veins and peripheral retina hemorrhages. There are also many other signs of WM in the eye.

So if anyone with WM is having new vision problems they should call their doctor. Even if they are not having problems if their IGM is over 3,000 they should have a dilated eye examination. Many of the problems some patients with WM have may not be related to WM but may be one of the many eye conditions patients get between the ages of 40-80.

Fionna
Blurred vision, along with daily nosebleeds, and a feeling of disengagement with my brain, were the symptoms which I first noticed before being diagnosed with an IgM of 5240 and SV 4.1. I thought I needed new glasses, until the new ones made no difference. The sausaging described were not noticeable upon examination, but I was sent for a session of plasmapheresis which immediately restored my vision and fuzzy brain. It was like a miracle. I underwent several more PPs over the following six months before deciding on a course of further treatment.

Eunice Johnson
Let me add a point from my experience about blurred vision. Several months before I was treated, I went to my ophthalmologist whom I had seen for regular examinations for at least five years before. He was most familiar with the "landscape" of the inside my eyes. He reminded me again that he had only read about WM in textbooks but had never knowingly examined a WM patient's eyes other than mine. (At an earlier appointment I had taken him articles about the various ophthalmological features of WM.) At this earlier time I saw him after diagnosis everything appeared to be normal. Later I started to experience what I called "grey outs," jagged rainnbow-colored streaks, blurred vision . . . those sent me back to him more than once. (Each visit he has examined the retinas while my eyes were dilated.) The time just before treatment I noticed he was looking at my retinas longer than usual, so I asked him what he saw. He described the veins as being "tortuous." At that time my IgM around 4100 and SV approaching 4.1. Even though the veins were not the usual "sausage-shaped" description, though he didn't record it before he left the room, I recommended that his assistant record it, which it eventually was. Then, I got my eyes examined again about six months or so after treatment by which time both the IgM and SV had been more than halved, and I asked him if the veins still had the "tortuous" appearance. At first, he did not know what I was talking about, and I suggested he look on the card to read what had been recorded at the last visit as I explained what had happened. He then looked again and said everything looked normal. MORAL of this story: Make sure things are recorded; ask questions; one descriptor does not fit all.

blurred vision that would come and go with 4400 IGM 2.9 SV... [NOTE: This is just like me!!!]

My eye doc checked me monthly for 3 months, then again in 3 and 6 months. The retinal lesions healed as I underwent my chemo regimine (FC-R). Now, I see the opthalmologist only yearly, but he always checks for the hemorraghing.

By the way, even though everyone says that this is completely unrelated, during the year leading up to my diagnosis, nearly every month I had one or more episodes of bleeding in my eyes. I think they call it subjunctive bleeding, where you look in the mirror and suddenly see that your eye is in a sea of red. This happened so often that I began tracking it, and in that year I had about 14-15 episodes. Since my chemo, I've had it only once or twice a year. I never had the blurry vision, but I'll bet it's related to your SV

Sarah FitzGerald
Interesting timing, as I just went through something like that.

My eyes were blurring at times, especially mornings ( I think because I hadn't had liquids for hours) My IgM was approx. 6000, and my SV was 2.8. Dr. Treon saw me at that point, several weeks ago, and ordered some testing to be done to measure the vein size in my eyes. Turns out they were really enlarged, to the point that I could hemmorhage or have an aneurism. I began plasmapheresis soon after, the Monday before Thanksgiving, to clear out the excess IgM. I had 5 sessions of pp, which got my level of IgM down to 1600, and my SV to 1.6. I begin CPR tomorrow, which I am extremely nervous about.

B.F.
I was diagnosed with Waldenstrom's last August. My Hem/onc is Leo Gordon at Northwestern Memorial in Chicago. However, I went to see Dr. Lacy at the Mayo Clinic last month. She says I have smoldering Waldenstrom's. My IgM is 801 and my viscosity is 1.0. I have blurred vision is my left eye...it comes and goes. I noticed it way before I was diagnosed. When I saw my opthamologist, he checked for sausaging behind the eyes and there was none. It just so happens that I vision is blurry today, and if I have misspelled anything, it's because I'm having trouble reading the print on the computer.

I also have PN in my toes and the little fingers of my hand. When I was at Mayo, I mentioned it, but I guess it didn't seem important at that time. Now, that it seems to be progressing, I will ask Dr. Gordon.

Rinat Atar

I had exactly the same: blurriness in one eye that comes and goes. My IgM was then 9200 and SV 4.8

An eye exam detected retinal hamorrhages. After plasmapheresis (SV went down to 2.2) my vision was back to normal.

Hope this helps.

Julie Sintkowski
My brother (diagnosed 07/07) was seeing a similar blurry spot in his eye, he let it go for a couple of days, and he thought it was getting better, our sister-in-law is an optometrist and suggested he go to an ophthalmologist ASAP... he did and had clots in the vessels behind his eye. They did plasma pheresis to drop his protein levels down and as his blood levels get better, the blurriness decreases. They told him that it could have led to blindness...and all sorts of other complications. I would recommend making an appointment ASAP.

tom howenstine
I was dx 9-07....other than night sweats the only symptom I think I had was blurred vision. Tx 4 r 10-07...igm 5100 sv 4.1 at time of treatment ....recent flare after treatment igm 10000....sv 5.1...still experiencing
blurred vision but no night sweats age 63 Retina specialist who had done
some research with lymphomas during residence thought possibility of eyes just not getting enough oxygen. I'm slightly anemic. Tom Howenstine

Don Brown
I would see your eye doctor so he can perform the proper test to check for swollen blood vessel in the back of your eyes especially if you are having blurred vision. This is a symptom of WM - it shouldn't matter what others have experienced as you may be symptomatic. We are all different. I have never had this symptom but have had this test and continue to have it at least every two years whether I am symptomatic or not. Just a good maintenance practice for a WMer.

Gordon Green
My eyesight deteriorated prior to dx in 2004, best described as thousands of tiny cells swimming in circles, particularly in bright light. It turns out I was cryoglobulinemic. I was hospitalized for pp and developed severe nosebleeds. The doctors kept checking my eyes for retinal damage. After treatments my regular eye doctor said both retinas looked as if I had just recovered from measles. They're fine now.

In my part of Canada (BC) they measure paraprotein which they believe is more useful than straight IgM. My paraprotein was 36.2 g/L, which probably translates into IgM of about 5,000. I have no record of SV.

sue sawyer
Get thee to the eye doc without delay.....TODAY.....everyone who has had blurred vision probably got it from all different IGMs.....we all react differently....what is high to you, might be low to me.

Peter DeNardis

The SV could be causing dilated retinal veins in the eye (this does occur at elevated SV levels, but not for everybody). Past postings on the talklist were made to the extent that we should all see an opthamologist (hope I spelled that right) on a yearly basis to rule out any problems in this regard. If you haven't seen one yet, it's would be a good idea to do so. For medical-related information in this regard, read about hyperviscosity syndrome at: http://www.emedicine.com/emerg/topic756.htm

(Fortunately, personally, I haven't experienced blurring of vision, even when my SV was 3.7 and IgM was 6500.)

Salvitti, Ronald E CIV 60 EMS/MXMG
Steve, when my SV was 4.0 and my IgM was 6000 I had blurred vision. I had a eye exam and everything looked fine but I started treatment shortly after, mainly due to fatigue and headaches. I would get it checked out as soon as you can.

howard prestwich
my wife had some vision problems flashes and lights not blurriness. You ant to have your eyes checked now, immediately. the thickness of the blood causes the blood vessels in the eyes to get sausage like and could cause other vision problems. there is one lady on the talk list, Hanley, who is an eye doctor. ask her

paul listen
At diagnosis, I had SV of 2.02 and IgM of 1900 and never noticed blurred vision, although my optometrist saw definite sausaging/hemorrhaging of the retinal capillaries. During chemo there was one day when I had funky blurriness in one eye, but it cleared up after that day. My IgM at that point was on its way down, and was somewhere around 1300-1400. No blurriness since then. My IgM is now 800.
Don't know my SV at this point, but optometrist says capillaries looking almost normal now

eMedicine - Hyperviscosity Syndrome Article by Thomas J Hemingway, MD
Ophthalmic examination may reveal decreased visual acuity, dilated retinal veins, “sausage-linked” or “boxcar segmentation” of the retinal veins, or retinal hemorrhages.

Maureen Hanley
Date: Wed, 23 Apr 2003 7:36:27 0400

from Athens 2...

Patients who demonstrate signs or symptoms suggestive of symptomatic hyperviscosity should be considered for immediate plasmapheresis and initiation of chemotherapy.

An IgM level > 3 g/dL places patients at higher risk for hyperviscosity and requires a thorough history for evidence of oronasal bleeding, blurred vision, headache, dizziness, vertigo, ataxia, encephalopathy, or altered consciousness. Funduscopic [=back of the eye ] examination is necessary to detect signs of hyperviscosity such as venous dilatation, "sausage formation" hemorrhages, and exudates. Measurement of serum viscosity should be performed if available. The correlation between serum viscosity levels and symptoms is often poor from patient to patient. However, the serum viscosity level correlates well with clinical signs and symptoms in the same patient. Most patients with a serum viscosity < 4 cp will not have symptoms of hyperviscosity (normal = 1.8 cp)

Waldenström's macroglobulinemia‑associated retinopathy, doi:10.1016/j.ophtha.2003.05.036

Previously reported ocular manifestations of Waldenström's macroglobulinemia include immunoprotein deposition in the cornea and conjunctiva, serous retinal detachment, retinal vascular occlusions, retinal hemorrhages, macular edema, and orbital pseudolymphoma[6, 7, 8, 9, 10, 11, 12, 13, 14 and 15] as well as IgM deposits in all layers of the retina. [16]. This case demonstrates that a progressive paraneoplastic retinopathy can occur in a patient with elevated serum IgM levels associated with Waldenström's macroglobulinemia.