Reply To: A few questions? New and scared

December 24, 2013 at 12:01 am

REHAB REHAB & MORE REHAB. I was diagnosed 1/31/13 but strongly think early symptoms started around 8/15/12. Spinal tap confirmed my diagnosis at Swedish cherry Hill in Seattle. Initial 5 day loading doses of IV Metaltrexate (sp.) seem to halt the progression. Admitted to Swedish Rehab but nicked my right calf & developed an Infection. All kinds of different antibiotics were IV’ed into me. Rehab really helped & I was scheduled to go home Mid-March when they gave me an antibiotic called Dapsome, plus they started weaning me off of oral predisone (100mg/Day dropping off by 20 mg’s/day each week). A week after that I started relapsing again & after reading the Dapsome warnings regarding ” . . . may affect nerves, . . . “, that one is now PERMANENTLY OFF OF MY LIST. Readmitted to the medical side of Swedish with 4 days of IV Metaltrexate then 5 days of IVIg. Rehab’ed again, worked back to where I was around the first of March & scheduled to go home in Mid-April. The Doc’s at Swedish developed a drug maintenance plan that I would start taking an old proven Cancer Immune suppression pill call Immuran/Azothriprine working up to 200mg/day plus once a month IVIg, infused over a two day period.

Seemed to work but relapsed again around the first of May. back to the Hospital (local Port Angeles), Metaltrexate 4 days, IVIG 4 days, and then to a local nursing/rehab place. REHAB REHAB Rehab, but one thing I noted was this time the speed of recovery was twice as FAST. also, I noted that the IVIg seemed to help a lot more. Out in a month to home but signed up for Out Patient Rehab (HIGHLY RECOMMEND IT) and in a couple of weeks, working with a Quad Cane. By mid-July around the house I was “Freestyle Walking”, i.e., NO CANES.

The local Physican’s Assistant who I see noted an elevated Blood Pressure reading & talked me into a Satin called Lisinapril (sp.) 10 mg/day. Didn’t budged it a bit and told me to up it to 20mg/day which I did. Plus at the time (Aug/Sept) I had weaned totally off of Predisone. First week of Nov started feeling weaker & couldn’t walk as much. In 3 days had to go back to my wheeled walker. Also noted my BP was spiking and I had trouble sleeping (see my thread re early warning signs). Into the ER & got hooked up to the Liquid Roids for 3 days, back onto the 100mg/day Predisone, and the following week my normal 2 day IVIg.

Well what a relief, parked the wheeled walker, Heavy Quad Cane for a Day, the 3rd day, Sunday Go To Meeting Light single point cane Annnnnnnnnnnnnnnnnnnnnnnd Freestyle Walking. Within 3 weeks of that; into and out of the 6 steps into my motorhome, driving the Explorer (Seattle & Back), don’t use any canes/aids in the house.

Bottom Line/Lessons Learned:
1. Minimize Risks, read and avoid any drugs that have warnings regarding NERVES, Autoimmune Conditions, or (in my case only) Azothriprine.
2. REHAB & treat it like a fulltime JOB.
3. The idea of AIDS, i.e., Slide Boards, Wheel Chairs, Push Walkers, Wheeled Walkers, Canes, Etc., is a TEMPOARARY ONLY AID necessary to transition to the NEXT aid. Try NOT to become DEPENDENT on any one AID. The Idea here is to become Independent thru REHAB.
4. Do NOT GIVE UP!!! Keep Pushing