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Old 03-26-2018, 09:19 AM   #1
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Location: Fort Covington, NY
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Hello everyone,
I am new to the forum and relatively new to MG (diagnosed late July last year). I began experiencing muscle weakness (arms and legs), low stamina, and diminished respiration, when prone, as far back as late 2012. My PCP had me undergo a number of tests including blood work, imaging, and an EMG. Nothing was concluded so I just struggled along coping with my new normal. A year ago I relocated from Houston to remote northeast NY state. By then I was pretty much a shadow of my former self. I had developed drop foot on my right side and could do very little physically.

The respiratory issues were also worsening. On the 4th of July I told my wife I could not breathe and she took me to the ER in a nearby town (Malone, NY). They assumed I had a pulmonary embolism and wanted to get MRI images of my chest. I told the doctor I could not lie down on my back so they gave me a dose of fentanyl. After several attempts to get me in the tunnel and 3 more doses of fentanyl the doctor told me she was going to have to intubate me. After doing so they got the images and there was no clot. Not knowing what to do with me then they decided to send me by ambulance to the next larger hospital in Plattsburgh, NY. When they took over they noted I had a wound on my toe which was infected (I had been receiving treatment for it). Assuming I was septic they started hitting me with vancomycin and gentamicin. With that my kidneys failed. At that point the staff decided I needed to go to the level 1 trauma center in Burlington, VT. With my failed kidneys they were somewhat limited as to what they could do but after several days a diagnosis was reached (I believe based on a SFEMG and some double vision). I am seronegative based upon several blood tests.

With the diagnosis they began plasmapheresis which helped immediately. My kidneys also began to recover and by my fifth procedure they were fully functioning. My total hospitalization was right at 21 days, 15 of which were on a ventilator. I left the hospital and went directly to a rehab center (Fanny Allen in Burlington). After 12 days there I got to go home. I left on prednisone, mestinon, and CellCept. I continued rehab at home for a period and then moved to an outpatient rehab center nearby. Along with the MG I have type 2 diabetes, intermittent atrial fibrillation, hypertension, and obstructive sleep apnea. I am 59 yo and somewhat overweight (6’3”, 235 lbs). I left the hospital in the best frame of mind that I had had in years. Knowing what was wrong with me and that it was treatable gave me great comfort and hope. My new life was going along fine until some bumps in the road. I had been warned about the impact of prednisone and thought I had things in hand. I was blood testing typically morning and night and things seemed fine. I found myself in Afib one day and called to see my PCP. When I arrived they tested my BS and it was 500! That landed me in the hospital and got me started on insulin. Since then I have established very good control. At the end of last year and into January I started to regress.

My muscles were weaker and my breathing labored. My neurologist started suggesting IVIG. While we were trying to arranged my sessions my condition continued to worsen. Fearing a crisis my doc admitted me through the ER. I did five days of IVIG (Gammagard) with no issues. Since then I have had two more sessions (two days each). Unfortunately after the second day of the last session I started to experience some irritation/blurriness in my left eye (my dominant eye). I thought I had scratched it or worse I had disrupted the flap from my LASIK surgery. After two days I went to see my ophthalmologist and he said I had a retinal vein occlusion. He sent me to a specialist who confirmed that it was a central retinal vein occlusion (CRVO) with macular edema. The damage is irreversible but they can treat the symptoms/complications.

The specialist gave me a shot in my eye of Aylea which is an anti-VEGF “drug” which reduces swelling and limits the development of additional blood vessels (which are detrimental to vision). The first shot restored a lot of my vision which was badly impaired. I go for another shot on Wednesday. My neurologist does not want to link the CRVO with the IVIG treatment but has suspended subsequent procedures and did have a blood viscosity test ordered (1.3 cp which is acceptable, 7 days after last IVIG).

Currently I feel great! I have been resuming PT and have started walking. I am surprised how far I can walk and how strong I am feeling. For me the most amazing part is that my respiration is dramatically better. Before I went into the hospital for my first IVIG I was only able to get about 1250-1500 on my incentive spirometer. Lately I have been able to exceed 5000! I don’t know if it is the IVIG or if possible the CellCept is finally kicking in or a combination of things.
Well that was sure long winded. I apologize for that but I kind of look at this as therapy and it also feels good to communicate to people that “know” what’s going on.

Last edited by Jo*mar; 03-26-2018 at 12:18 PM. Reason: spaced text
WardD is offline   Reply With Quote
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AnnieB3 (04-03-2018), pingpongman (03-26-2018)
Old 04-03-2018, 11:37 PM   #2
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Join Date: Feb 2009
Posts: 3,300

Geez, Ward, you've really been through it with MG! You're very lucky to have had great care.

Have they tested other basic tests such as Vitamin D and B12, TSH, celiac disease, or other AIs? I'm just asking because many of us have more than one condition.

I hope you will continue to be stable!! Thank you for sharing what you have been through. I'm sure that it will help others here!

AnnieB3 is offline   Reply With Quote

blood, days, hospital, ivig, started

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