what to do.

[old_guy]

I really don't know where to start but here goes. My DW has MS and I have taken her to see a specialist in Portland Oregon the last few years. She was on the daily shots and they were starting to get to her so the Dr put her on the new pill. well the new pill was or is so much worse than the shots. she gets so she doesn't know who she is or any one else for that matter ad throws up a lot. She is losing weight like crazy and So we made an appointment to go to Portland to see the Dr last friday. well, she was feeling pretty good considering on the trip down and we ran into some traffic back up due to a wreck, which is pretty normal for Portland, they have to have a wreck every 1/2 mile or it just won't be Portland. Well, we called the office to let them know we would be 15 minutes late and they told us we had to reschedule since the Dr wanted to leave at noon that day. I told DW not to reschedule we didn't want that. but the gal did it any way. 15 minutes late and who has ever been to a dr's office and got into see the dr on time. they are always behind but the office gal did not listen. I have spent the last three days listening to my wife moan and groan from pain in the lower back caused by the MS , any way I really don't know what to do to help her. I called the portland office this morning and I really wasn't the nicest person in the world by this time and they finally called me back tonight, not the nurse, not the Dr, but a office manger to find out what she could do. I told her what was going on and I finally told her that I was fed up with the poor help I was getting and fired the whole lot of them on the spot. I told her I think a lessor person who look into suing them for poor handling of my wife's needs. BS I know but I think I got my point across to her. I will have to look up the nearest MS DR so I can get some help for her. sorry to rant so long but I am at my end of the rope. I know this isn't over yet, but we were planning to go to AZ in a few days and this puts it all on hold now. maybe next year.

[Rfd2117]

You did the right thing kicking that dr. to the curb. I've had secondary progressive ms since 2005(probably a lot longer) and have been on every med out there including tecfidera and none have worked. So I feel your wife's pain and yours. Find a good neurologist or a ms center. They care about the whole person not going home early or playing golf. All I can say is fight for you both because no one else will. Stick to your guns and I wish you guys the best.

[Irover]

Double post so I removed one!

[Irover]

Sorry to hear this; getting older is settling in on me also. It seemed to have started at 59 when I went to get a complete physical in the Fall of 2010. I was starting a job for Amazon.com and wanted to make sure I was healthy enough. I was put on Tagament 150's for gas. Went to work for them again for the Seasonal Rush of 2011. The end of March 2012; 3.5 mos. before my 60th yr. a severe Heart Attack which left me with 3 stents; 2 in the widowmaker and 1 in the Right coronary artery. Then i was diagnosed with congestive heart failure; 1/2 of the front heart wall to the bottom don't pump fresh blood out. Short of breath; and Angina. Recently I have been diagnosed with COPD and bronchospasms. I have medications for all but sometime I think they do more harm than good.
Prayer sent for her and you and the stress can be horrendous as I assisted two family members with Alzheimer's; the last in 2007.

[GramaofAAAA]

I hope you are getting some answers for your DW and her MS. It is a nasty illness. My daughter has had MS for over 3 years, she is only 38. She decided that the meds(shots) made her sicker than the illness and stopped them after 6 months. She decided to try something called LDN (a lot more natural) and seems to do pretty good taking it. Also, the shots cost her about $2600.00 monthly and she really can't afford them. It might be good that you found a different doctor, maybe they can give her some pain free days....good luck to you both. 🙂

[old_guy]

thanks everyone for your kind words and prayers. I did fire the Dr in Portland last night, a office manger called and I told her what was what and I told her it was madding that the Dr didn't call but a office personnel. I told her I had hired another Dr closer to home and I would not be back nor would I ever recommend them to any one. I am not sure if the pain in the lower back is caused by muscles or the lee-suns from the MS. she had the back pain for 10 years before they finally decide she had MS. I will have my Daughter ask about the botox injections when they take DW in thursday. thanks again to every one, God Bless You. I really do feel better today, I had a good cry last night and I think that helped.

[stsmark]

Hi Old Guy,
Can I ask a question, is your wife's pain from crazy muscle tension (spasticity)? I have PPMS so I am familiar with locked lower body parts and nasty spasms. Has any one suggested Botox injections? I was getting them in my legs and lower back at 90 day intervals. I recently had a test done with a small dose of Baclofen injected directly into my Cord and the results were startling from spasticity reduction. I should be getting an Itrathecal Baclofen pump installed in a few months. They can play with the affected area some what with the height of the catheter in the Spinal Cord to a point. The company who makes the pump is called Medtronic and they have a referral service to a provider. The procedure is Medicare approved. There is plenty of info on the web about it. A great website for Spinal problems is CureCare from Rutgers Univ. FYI. Please feel free to PM me if you would like to talk some more.

All the best, Mark

[fla-gypsy]

My prayers for you and your wife. Our health care system is not moving in the right direction. Don't give up, keep looking and searching for the right doctor who will treat her like a human being and get her the relief she needs.

[WyoTraveler]

They have a new med out now called tecfidera for MS that seems to be working well. The bigest problem with the new meds is they are almost unaffordable for the people that need them.

[lizbard]

I agree you need to find a support group for the spouses of people with MS or whatever they decide your wife has. Check at one of the hospitals that is connected to a university. The support group will give you a place to talk to other people going thru the same thing. This way too, you can compare notes on doctors, staff, etc.

Also, find a support group that can help you with respite care where one weekend every few months, someone will care for your wife while you go fish or something to relax or you will be laid up and unable to advocate for her. My husband volunteers at an Adult Day care for people with Alzheimeirs or other problems with the brain. This gives the family members 4 hours a day to do other things, they are cared for and entertained, play dominos, etc. Once a month on the weekends, they will have 3 of the clients stay over from Friday evening to Sunday.

Zale Lipshy University Hospital is next door to Parkland Hospital in Dallas and connected to UT Health Sciences. Zale Lipshy specializes on problems with the brain. My husband had a large sub frontal brain tumor that was successfully removed in 2002. Thank heavens it was benign. He became a day client at the treatment center from July to December 2002, where they decided he didn't need to be a client but has worked as a volunteer.

Hope you find better treatment for her, although you may need to go to another state.

[emzee]

I am so sorry oldguy. This sounds like typical office crap. I wish you would have not even called them. They probably were there way after they said. I get tired of the one sided way we get treated. We cannot be late but we are never seen exactly when our appointment is....in fact sometimes far from it.

If you like that doctor you were seeing I would call back or go there and explain your worries in person. Maybe that would help them to better understand your troubles.

Do you have family close that can give you some moral support? Please discuss your worries with someone that can help you. You have too much to endure alone.

Some body once said to me, "so this is the golden years"? LOL!!! That was my mum.....she was right!!

[amandasgramma]

I'm so sorry for what you're going thru. You're right....that's BS and you and your wife shouldn't have to go thru that. Take her to an ER....they should be able to help her with the immediate problems. And yes, I'd be finding a new doctor. I don't know where you live, but I lived in Salem 10 yrs ago and ended up taking my husband to Providence in Portland. You do NOT need to have a referral from a doctor. They were AWESOME. The doctor in Salem was letting my husband die and denying what his REAL illness was (he claimed just emphysema -- turns out DH had leukemia and congestive heart failure, too)......so DO be an active partner.....and yell your head off. She should NOT have to be in so much misery!

[mustangglp]

I feel your pain! My wife has been to both UCLA and Stanford to no avail they want to put her on embril but she is afraid to take it because UCLA put on 60 Milligrams of pregnazone and she got a massive infection and ended up in the hospital on IV antibiotics for six Weeks.