[Winston D Roden]

Hello Friends:

Yes definitely. I was diagnosed in Feb. 2019 and have had vertigo and unsteadiness ever since. My DIL says I look like a little ole drunk man walking! I have blamed it on the medicine I have been on but I am not sure that is everything. I also have COPD and Interstitial Lung Disease and use a nebulizer and flutter valve four times a day for the medicine and to exercise my lungs. It only takes 10 minutes or so the get the medicine in my system but I continue with exercise for about 30. I developed these problems with my lings after the neurologist decided to take me off IVIG and try Ultomiris. The most common side effects of Ultomiris are upper Respiratory Tract Infections. I have been susceptible to respiratory tract infections all my life and then I smoked as a young person. I was admitted to the hospital with severe lung failure about September 2023 and diagnosed with COPD and Interstitial Lung Disease, both of which the doctors said had no cure. My treatments leave me very unsteady, but I am trying to strengthen myself.

[Winston D Roden]

It is hard to decide. Weakness or double vision. I guess I would put ocular problems on the top because they cause weakness if I push my eyes too hard. And the double-vision is present all the time. I feel that I am looking cross-eyed at everything and can only get relief when I block out one eye. The weakness hits when I am least prepared for it.

[Winston D Roden]

I developed double vision in early 2019.  I was lucky in that it took only three trips to medical people to get a diagnosis.  My optometrist sent me to a Glaucoma specialist and I never even got past registration before they know I was at the wrong place and sent me to NeruoOpthamologist in the same business, different location.  She recognized it, first case she had, in just a few minutes and prescribed Mestinon.  After that failed to give good results she sent to a neurologist and who treated me until she moved across country and sent me a neurologist in UAMS, Little Rock, AR.  In the early period I did as much online research as I could and quizzed the doctors, both of who responded to my questions.  I already had cataracts and have been wearing prescription lenses for years.  I would block out one eye so I could see more clearly but of course I did not have any depth perception.  The Neuro said do not block the same eye all the time, so I swapped between two pair of glasses.  Finally lost one pair so now I use the one for my master eye.  I am able to go some, a little more than earlier in my treatments, times without either eye blocked.  I prefer to paint a lenses in a pair of glasses and remove the lens so I have peripheral vision.  If the vision does not overlap between the eyes, I do a bit better.

When I first started I was more sensitive than those people around me to the blocked out eye.  However I have a friend who lost vision in one of his eyes and has been wearing a blocked lenses for years so I figured if he could do it, I could.

[Winston D Roden]

My port has been a blessings.  When I first started getting IVIG it was relatively simple, but then I started having difficulty.  Hard to stick, vein blowing out, having to move it during the infusion and so on.  Then one day in Infusion RN asked if I had considered a port.  A call to the doctor, a trip to the hospital for the implant, which I stayed awake during, and have never looked back since.  I say again, it has been a blessing.

 

[Winston D Roden]

A simple statement: I agree a port is the way to go.  After some time my veins were failing and a nurse mentioned a port.  I have never regretted it.

 

[Winston D Roden]

Yes, my meds have caused GI issues.  I have eaten many crackers which seem to give some relief.

 

[Winston D Roden]

I was diagnosed with Mg in 2019.  I too had a mild case of Polio in the mid 1950’s around ten years of age.  A first cousin I was in close contact with was hospitalized, but the Doctors said they were trying to keep from have two in the family hospitalized at the same time. I have had problems with pain in my legs ever since.  My MG has certainly weakened me and changed my life.