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Wooziness and MGUS

Posted by harley23 @harley23, Apr 4, 2023

Have any of you MGUS patients experienced wooziness? It isn't vertigo or a spinning feeling. It feels like I'm drunk, and I stagger when I walk. It doesn't occur every day, but it can be debilitating to the point that I won't drive. My ENT has ruled out vertigo from an ear issue, so my hematologist NP has referred me for a neurological workup. She doesn't think it's from MGUS. I also noticed it's worse if I take Turmeric or ibuprofen. I've stopped turmeric but take ibuprofen still for pain.

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Ginger, Volunteer Mentor | @gingerw | Sep 6, 2023
In reply to @harley23 "Hi Debby. I too have had this feeling of drunkenness when I sit or stand. It..." + (show)
Profile picture for harley23 @harley23

Hi Debby. I too have had this feeling of drunkenness when I sit or stand. It started about 16 months ago and has progressively worsened. It goes away when I lie down. It is not vertigo. I finally saw my ENT and it looks like my symptoms are from a condition related to aging (I am 76) called Presbystasis. It is common and incurable but treatable. Treatment consists of balance training mostly so I am waiting for a physical therapy referral. I highly recommend you see an ear-nose-throat (ENT) doctor. After 16 months of seeing a plethora of specialists, I finally have an answer. I keep a positive attitude and look on the bright side. The blessing has been that in my search for an answer, a small aneurysm was discovered in my brain that I have had treated with a type of "stent" that will cut off the aneurysm blood supply and make it go away! Praise God! Keep us posted if you like on your journey. I hope this helps.

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@harley23 And, once again, your story reminds us that things can be found when we aren't expecting them to be! The same way that MGUS is often found as our medical team looks for answers to another health issue.

Happy to hear you had a stent placed and a cure for that aneurysm.
Ginger

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debby090 | @debby090 | Sep 6, 2023
In reply to @pmm "MGUS patients frequently complain about neuropathy, myself included. Evidently it confuses us about the relationship of..." + (show)
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MGUS patients frequently complain about neuropathy, myself included. Evidently it confuses us about the relationship of the feet to the floor which can result in falls.
I went to orthopedic and podiatry docs who were not helpful. Nagged my PCP to appoint me with a neurologist, who seem to be in great demand. My PCP and specialty docs are all at a large medical center. Convenient, but popular and I wait for appointments. Waiting is not my forte.
The suggestion to see an ENT specialist is good. I am otherwise symptomatic of neuropathy, so imbalance related to inner ear issues was one of my rule outs.
Good for you for getting to the source of your symptoms. Also might consider a neurology consult due to “tingling.”
Patty

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I too have neuropathy of the feet. My podiatrist just keeps giving me shots in my feet that don’t resolve anything. So I will definitely look for a neurologist! Thank you!

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Patty, Volunteer Mentor | @pmm | Sep 6, 2023
In reply to @debby090 "I too have neuropathy of the feet. My podiatrist just keeps giving me shots in my..." + (show)
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I too have neuropathy of the feet. My podiatrist just keeps giving me shots in my feet that don’t resolve anything. So I will definitely look for a neurologist! Thank you!

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Shots huh? Yikes! I would definitely ask a few questions. 😳
Patty

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sunsetchris | @sunsetchris | Dec 6 12:22pm

I believe it is from the MGUS. The community medical establishment does discount these symptoms in a primary care setting, as so many people with different diagnosis have neuropathy. BUt in my oncologist care they take it more seriously. Many people have neuropathy. Mine just suddenly came on a few weeks ago. Out of no where so it is most likely from the MGUS. The primary just brushed it off but the oncologist says he will discuss when he sees me in January and ordered a 24 hour urine test. I had a slight amount of protein in urine as well. Primary always very conscientious since this diagnosis. As well as years before. She is good and part of a very good hospital system in area. But she is not an oncologist that specialized in Multiple Myeloma. My oncologist specializes in Myeloma. So he has the last word on new symptoms in my mind.

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sunsetchris | @sunsetchris | Dec 6 12:29pm
In reply to @debby090 "I too have neuropathy of the feet. My podiatrist just keeps giving me shots in my..." + (show)
Profile picture for debby090 @debby090

I too have neuropathy of the feet. My podiatrist just keeps giving me shots in my feet that don’t resolve anything. So I will definitely look for a neurologist! Thank you!

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@debby090 shots in feet??!! Discuss new strange symptoms with oncologist that manages the MGUS. My husband has neuropathy for years but never got offered shots. He has diabetes. No shots. They are invasive and maybe a possibility to cause infection and no cure in literature. Warmed up socks would do more than shots in feet. Especially going to bed. Let oncologist mange new symptoms and if they say go to see someone else then go.

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