[willjames2Participant]

Hi folks,

It’s been a while since I have been here but I have had an issue with my vision recently and wonder if anyone else had experienced anything similar?

I have an issue with my eyes, like I’m a little drunk but without having any alcohol. I have no pain, no hearing problems and had an eye and hearing test and everything is fine, yet I still have an issue. It’s been about 6 weeks now since it started and affects me most when I try and drive (fast moving objects). I had dizzy spells initially but not to the point where it would affect my balance but these have subsided. I’m 43 and in remission for light chain myeloma after a tandem auto / allo SCT. The only drugs I’m on currently are penicillin and calichew.

Has anybody else had anything similar?

Please advise and many thanks in advance.

Kind Regards

Scott

[davidainsdaleParticipant]

Hi Scott

I experienced a lot of fluid retention around my body during initial treatment with CTD which took some time to wear off, this caused the pressure in my eyeballs to increase which was picked up during an eye test, but I didn’t experience any vision problems. My consultant said that it was due to the Myeloma treatment and after a few months the pressure returned to normal.

Reagarding dizziness, after my stem cell and other treatment, sometimes if I have been sitting for a long time eg train or bus and get up too quickly I do feel a little light headed for a short time but it soon passes. Never had this problem before diagnosis.

The experts on the Helpline may be able to give you more advice.

Hope this helps.

David S

[willjames2Participant]

David,

Thanks for the reply. I’m not sure what it is but I’m having a CT Scan tomorrow, which will hopefully give me an answer on what’s going on, or at least, reassure me, that nothing serious is causing it…either way I’ll know in a few days.

I’ll keep all posted if I get an answer.

Kind Regards

Scott

[misterboyParticipant]

Hi Scott.  It is very interesting that you have posted the issue you are having with your eyes.  I too have experienced something very similar.  My eyes struggle to focus and keep up with whatever is going on inside my brain to the point my eyes feel strained.

As a patient of a similar age, I am very interested in your story – how long ago was you diagnosed?  What were your initial symptoms?  What were your light chain levels?  How long did it take before treatment?  Apologies for all the questions, but it isn’t often I come across many other early 40’s patients and am still wading through the unknown and constant waiting!

[willjames2Participant]

Hi Misterboy,

It’s been about 8 weeks since the visual disturbances started to happen, however, it has eased. It’s still not perfect, but better.

I did have a CT scan and that came back clear, so not sure what’s caused it, Specialist thinks it may be stress to do with work…so in short it seems to be getting better.

I was diagnosed in Aug 2013 and it presented with back pain to the point where my lower vertebrae collapsed. I was airlifted home from holiday and diagnosed after a bone marrow biopsy, however the clinic in Spain carried out CT scans and MRI so the hospital had some info to go on. My light chains were approx 1500 initially however, after 3 X cycles of CTD I was in remission and thankfully, still am to this day. I have had auto/allo transplants and generally feel very well. I’m lucky so far…and long may it continue.

Not sure where you are in your treatment, but if you need any info then get in touch.

Kind Regards

Scott

[andygParticipant]

Hi Scott.

Vision problems are a common side effect of some treatments and Dexamethasone can cause cataracts. Though seeing your not on it may not be myeloma related.

Every day is a gift.

Andy.

[langdaleParticipant]

I have noticed that some times my long distance vision is much better and see better without glasses but at other times it is worse but not seriously so. I am three and a half months post transplant and my bone marrow biopsy showed no myeloma cells so just have 4 weekly Zometa. I am 66, played golf today for first time since October so so far so good. Could do without the occasional lower back ache and peripheral neuropathy in  my feet. I think I have had a smooth ride compared to some and a big thanks to those consultants, doctors and nurses who looked after me so well at Dewsbury and Pinderfields Hospitals.

[janwParticipant]

Hi,

Good to read that you are feeling OK after your sct. You are doing well to have the energy and fitness to be playing golf. I think it took me a good six months after my sct before I had sufficient energy to go out. Hopefully your peripheral neuropathy will get better with time. With my present sixth cycles of VCD treatment, I’ve been suffering with lower leg/foot pain especially when the weather is cold. My consultant suggested taking daily vitamin supplements of B6 and B12 to help reduce the nerve damage. Unfortunately due to three collapsed vertebrae, my bone pain in my ribs and back never disappeared throughout the five years of remission and I continue to use pain patches and tablets.

Only this week, I noticed on an American poster which was designed to highlight common myeloma symptoms included difficulties with eyesight focus. I had never realised this could be part of myeloma. Approximately 9 months prior to my diagnose in 2010, I experienced episodes when my focus just wasn’t right for short periods of time, but fortunately following my sct, the focus problems settled down. However when my light chains started to increase again last summer, the eyesight focus difficulties started to emerge again. Before starting on VCD in October 2015, I had an eyesight test at spec savers, but the optician stated my left eye kept going in and out of focus which made the prescription difficult to finalise. My new lenses are not right, but I’m now going to wait until after my forthcoming second sct before I have another eye sight test. I hope your eyesight settles down soon.

Regards Jan

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