This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm a little frustrated at the time it is taking me to recover my strength and stamina to at least their pre-stent procedure levels.

It will be 4 weeks tomorrow that I returned home. I'd guess my stamina and walking strength are still only 50% of what they were before the procedure. Yes, everyday is still a little better, but I still start to crash at about 7pm, in bed soon after, and spend about 12hrs a night flat on my back. And, this after doing very little during the day.

I had used LDN successfully for about a year before stopping it a couple of weeks before the procedure. The primary benefit I felt had to do with stamina.

Are their any LDN users who have gone through the stent procedure and know whether LDN is compatible with coumadin and plavix?

I've been off all pain meds for a few weeks, and would like to restart LDN (and possibly acetyl l-carnitine) to help with stamina, but am leary of doing so before stopping the blood thinners. Does anyone know if either of these can be used at the same time as coumadin and plavix? My 2 month appointment at Stanford is set for Nov 8th, but I would like to restart the LDN sooner if possible.

Thanks for any advice,

--Tracy

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CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

I"ve been on LDN for about three weeks now. I asked the gal at Skip's pharmacy if Coumadin would be contraindicated and she said no, so I'm taking it while still on the coumadin and don't feel anything wierd from it. Granted I just started, so take that for what it's worth, but the pharmacy tech. told me it was no worries.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Lew, thank you, thank you, thank you, that's all I needed to hear. I'm starting back on LDN tonight.

I think part of my weakness may be due to the weight I lost during the last several weeks. Only about 12 pounds, but I'm pretty lean as it is. I now weigh less than I did when I was 18, 35 years ago.

I've started making and drinking bone broth throughout the day, hopefully this will give my body some good raw material for repairs.

LDN tonight...

--Tracy

Bone broth video for anyone interested:

Bone Broth Recipe/Video

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CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Tracy - I stopped the LDN until I got off the Coumadin - Dr. D.'s assistant did not want me taking the LDN because he was unsure about the contraindications. I started back on the LDN at a lower dose once I had my two month follow-up.

Sharon

Well, I can tell you only about my plans:
I plan to stop LDN 3 days before the procedure. I will inject Clexane (enoxaparin) for at least 1 month but may be two. I plan to start with LDN after finishing this period of Clexane.
Good thing is I will not have to go to check my INR. The hematologist in my town is a nightmare. Even doctors are scared of him. There are no restrictions as for food.

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Sharon, I plan to do the same. I was on 4.5mg nightly for just about a year before I stopped it in preparation for the stents. I tried restarting LDN at this same dose a few weeks ago (about 5 weeks post-stents), but was troubled by renewed bladder leakage and increased lower leg spasticity, both of which had been much better after the stents were installed, so I stopped LDN again and plan to restart at 3.0 mg nightly after I return from my 2-month follow-up (and after I discontinue blood-thinners) next week.

I plan to restart ginkgo and to begin EGCG then as well.

It's interesting, the people closest to me are telling me that I seem to be cognitively much improved as I continue to heal. And, I am pretty amazed at the number of things I'm able to get done everyday, with much less need to take rest breaks.

Could be the cool weather we've been having. Could be that I'm healing in ways I was hoping for. Time will tell.

But, I still reserve the right to rest as needed, and use a walking stick for longer walks. I still hit my stamina wall at times.

--Tracy

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CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Tracy, I'm glad things may be turning around for you. That is encouraging.

I'm so happy to hear these hopeful news from you, Tracy. I wish you all the best that things will continue to get better at least in the long run...

Hi there!

For what it worths, I'm taking both coumadin (on blood thinner probably forever) and LDN for 4 years now. I did not get any problem yet.

Yannick

Hey, this'll kick your butt! Be prepared.
I did a few things, filled out by health care directive and POLST forms (they ask you for this at check-in). Contacted an in-home care company. My husband was with me every step of the way, or I woould have been road kill the time I reached baggage claim.

Hire a caregiver if you can afford it, or call M.S. Foudnation-MSF, give grants to those lacking financial resources, for like someone to meet them at the airport on their return, get them settled in at home etc. Call 888-673-6287 http://www.msfocus.org/Homecare-Grant-Program.aspx

"Coming Home from the hospital can be a difficult time of transition. The MSF Home Care Assistance Grant Program offers a four-hour visit from an aide who will meet the patient at the hospital, provide transportation, and get the patient settled comfortably at home. "

Check with any local MS support groups, get a team together. Luckily I had such a group, mshelp.org - they supplied a folding wheelchair we took on the plane & all over Stanford. They also supplied a rolator, this is the first time I've used one, but I still need it at 10 day out.

Whether it is the flu, any physcial challenge always hits me harder, and this is no exception.

Yes, I am starting to feel better and am optimistic, but this has been a tough row to hoe.

SammyJo,
I'm very glad to know that you're healing, and that you're optimistic. Expect every day to feel a little better, and I hope you experience some early tangible benefits soon to help ease the way.

I agree with your "tough row to hoe" comment, and I think those of us who have had a tough time need to be especially honest in sharing our experiences with others on the forum. I think the CCSVI Tracking Forum can be very useful for others to help them understand not only the possible benefits in taking this step, but also the "tough row to hoe" side, as well.

Keep healing...

--Tracy

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CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Thanks Tracy,
Yes, there are some things we think are improvements over prior condition, but I know to give them weeks before I report, it is always so up/down. I'll do my log, but waiting for the procedure report so I know how to label everything.

On the LDN, my discharge notes said to stop all meds I was on (LDN, oxybutinin, baclofen). Warfarin/INR level seems to be a touchy balance game, so I am sticking with instructions, fewer variables to monitor.

Please, check any med changes with your own doc & pharmacist !!!

After the I'm off blood thinners, I expect to be on LDN indefinitely. Seems like good insurance against leukemia, the risk http://www.msrc.co.uk/index.cfm?fuseact ... pageid=698 for Novantrone patients was raised in 2009.