FW: CSSVI and vascular related issues with MS

[Guest guest]

Diagnosed in 2004 but had early diagnosis of possible MS as early as 1990

after the birth of my daughter and again in 2001 after the birth of my son.

I now realize these were probably relapses post pregnancy but I had few

other symptoms until about 2003. From late 2004, I was put on social

security disability and I was hospitalized as much as 25% of the time during

2005 and 2006. I never tolerated any of the traditional CRAB drugs and I was

on LDN from 2005-2007 but had to stop due to severe pain and the need for

opiates. My doc is willing to put me back on LDN if and when I am completely

off pain meds for some time and can control whatever pain is thrown at me.

I have been of course reading the CSSVI postings here on the list and the

variety of MS documents, uTube presentations, and materials in all sorts of

MS documents geared to patients, doctors, and researchers. I have several

blood clotting disorders and for a variety of reasons have a port a catheter

implanted to get IVIG infusions every 3 weeks. My last one was this past

Friday and for regular blood draws. I am also on blood thinners specifically

Lovenox injections twice per day except during my menses cycle. I have a

diagnosis of progressive relapsing MS or secondary progressive and a number

of autoimmune disorders besides MS. IVIG is the treatment of choice for me

and I have been on it for about a year scheduled every 3 weeks. I have not

had severe relapses anymore and as reported some months ago, I have not been

hospitalized for MS for about 17 months which is a miracle and a record for

me. One thing I have noticed based on being on the blood thinners is that

much of the MS pain and arthritic type pain has been going away and I am

finally on extremely low doses of opoids. As an example, a year ago I was on

40mg of oxycontin twice per day and 15mg of oxycodone for breakthrough pain

every 4-6 hours. I had been on this protocol since about 2007 when I had to

come off LDN after a severe relapse which left me with constant non-stop

intolerable pain.

Interestingly, my docs have been very against my going off pain meds because

of the extreme severity and I have forced the issue for many reasons

including the concern that some of my continued respiratory weakness is

exacerbated due to the meds and I have very high liver enzymes although I

have never drank in my life and my liver biopsies at one time showed the

liver was enlarged and or fatty. In the more recent liver biopsies, the

liver was entirely normal and there was no explanation for my VERY high

liver enzymes which in general remain 200% of normal. I take milk thistle

regularly and naturopaths that I have consulted have tried various

interventions to detoxify the liver which have made me violently ill. So I

just stay on a very healthy all organic diet, grow most of my food or shake

the hand of every farmer that provides us veggies and most fruits, and so

on.

As of today I am on 5mg of opana twice per day and take no other pain

medications. I continue to reduce other medications such as beclofen as my

spasticity continues to get better and also have reduced my needs and the

amount of ativan which I took for severe spasms. My goal is to drop the

opana over the next 30 days and use oxycodone only if and when I have

severe pain. I have gone from mostly bedbound , too fatigued to walk,

and/or in a wheelchair from 2005 to 2007 and then walker from 2007-early

2009. I am now walking normally although I am on oxygen 24/7 due to muscular

weakness attributed both to MS and to 8 year long doses of Colchichine and

Plaquenil for several autoimmune disorders which caused long term severe

weakness and myleopathy. EMG confirms that I still have moderate myleopathy

which the neuro blames on the long time toxicity of being on the two

autoimmune meds. He and my pulmo doc continue to hope that I will continue

to regain muscle strength and perhaps eventually be off the oxygen.

While I had my MRI about a year ago, I also had MRV which checks the blood

flow in the brain and notes that there is flow void in the great vessels of

the circle of Willis. I have asked for guidance on this finding and was told

it was most probably a congenital defect. My pulmo had shared my files with

one of the docs doing some of the first CSSVI work and they didn't think I

was a candidate. One of the things I've noticed on blood thinners is that I

no longer have the nonstop vascular headaches and/or the partial focal

seizures which had become an issue quite frequently from 2007 to 2010.

I believe I had read postings about being on blood thinners and my

experience of less vascular and arthritic pain over all and some others here

or on another list had commented that they also had clotted disorders and

vascular issues and were on blood thinners. I will continue to monitor the

research and trials being done on CSSVI work and see if other tests might

be worth doing going beyond the MRV which showed the flow void in the great

vesels of the circle of Willis. The MRV was otherwise normal but I don't

know what other evaluations could be done now or at a later date.

Regards

in NC Mountains