This Is MS Multiple Sclerosis Knowledge & Support Community

and seen there MS symptoms become worse?

i have had a pressure sore on my natal cleft/coccyx for about 18 months, and when it first appeared and since then my MS symptoms (walkin/legs strength and bladder frequency/control) have worsened - (photo of lesion: http://tinypic.com/r/2nteaz6/6)
- in these 18 months my E.D.S.S has gone from 5.5 to 6.5 so am seated most of the day.
bare in mind i have been taking LDN for the past 5 years which had stopped the MS progression (SPMS), well until this sore developed
but for the past 8 months i have also changed from a western diet to the Wahls diet so this could be contributing so am very thin now, having gone from 135lbs to 115lbs, 5' 11" male.

Recently i was told by a junior neurologist that it is unlikely to have caused worsening due to the pressure sore/lesion, as it is a few inches from my spine,
but i spoke to a MS nurse specialist who was confident my worsening was due to the pressure sore and its location, as she deals with many MS patient who get pressure sores.

So for the last 6 months i have been sitting on a firm pressure relieving cushion, which was given to me from the district ed nurses - standard cushion they give out (http://tinypic.com/r/ehztjp/6)

so as this pressure relieving cushion is uncomfortable and isn't helping i want to buy a better one, but which ou t of these would be best for my coccyx sore:

http://www.essentialaids.com/comfort/pr ... hions.html


also i need to start using gel medicated dressings as currentl y jus tuse padded plasters to protect the wound - as i am ve ry slim, so little body fat around the sore
is either of thee two dressings helpful:

hydrocolloid dressings – these contain a special gel that encourages the growth of new skin cells in the ulcer while keeping dry the surrounding healthy area of skin
alginate dressings – these are made from seaweed and contain sodium and calcium, which are known to speed up the healing process



Has any other MS'ers here had a pressure ulcer/sore near/on there coccyx/natal cleft?
did your MS symptoms worsen when you developed the sore?
how long did it take the sore to heal? did your MS symptoms return to there state before developing the sore, once it healed?

thank you

hi,

i can't comment on the correlation you are seeing between the sore and progression, other than to say that maybe the healing process involved with the pressure sore has caused your body stress leading to progression? doesn't seem like the sore could be directly responsible for progression as the location of it would make it unlikely. if the sore is at the coccyx and a few inches off of midline it would not be in a position to affect any nerves related to decline in the areas that you mentioned.

the spinal cord proper actually terminates at the conus medullaris, which is typically at the T12/ L1-2 level. from there, the nerve roots splinter off forming the cauda equina and exit at various levels of the spinal column. spinal lesions affect function at the level of lesion and lower and motor control of the legs is mediated by areas higher in the spinal cord than your pressure sore. bladder and bowel could possibly be affected but i am still doubtful since the pressure sore was superficial and did not directly damage your spinal cord. if it had, then the difficulties you are having would be attributed to the damage done to the spinal nerves from the pressure sore and would still not be a result of MS progression.

at 5'11," 115lbs is very thin. the diet change from western to wahls may be related to the sore healing in a couple of ways 1) healing takes energy and nutrients. if you are underweight, its likely you are missing out on the calories your body needs to put towards healing the pressure sore; 2) without fat to pad your rear, there is increased pressure on your pressure sore which diminishes blood flow and inhibits healing. you didn't mention what stage your pressure sore was in the beginning, but 18 months seems like an excessively long healing time. it sounds like you might need to speak with someone about tailoring your diet to increase your weight and ensure proper calories and nutrients for the healing process.

my first suggestion for your pressure sore would be to get a consult with a wound specialist nurse. he or she can help you decide on the dressing type that would be most appropriate for healing of your pressure sore. often, the dressing type is dependent on the stage of the sore (from the pic and my limited knowledge of pressure sores, your appears to be at a stage II). my second suggestion would be to spend less time in your chair, or conversely if that is not possible then more time relieving pressure while sitting via wheelchair push ups every 20 minutes. my last piece of advice would be to get an air cushion for your chair like the roho cushion. roho cushions are fabulous at distributing your weight evenly. they are not for everyone, particularly if you are using a slideboard to get into your chair because the roho's tend to be too squishy for slideboard transfers. they are also expensive but are really great for people who spend a lot of time in thier chair and are prone to pressure sores. i don't see a roho in the link you posted but the debbonaire or airy cushion look similar.

if you are unsure about your wheelchair set up, a referral physical or occupational therapist for wheelchair positioning might be beneficial in helping you decide what type of cushion to get and also to trouble shoot your set up to prevent future sores (leg rests too short/long, seat depth, etc).

Hi mmpetunia,
thank you for your detailed reply, you're very knowledgeable! sound like a doctor

i see, so its unlikely the pressure sore is the cause of my worsening, hmm i thought it was the sore as my bladder became more frequent and legs weaker around the same time the sore developed,, maybe it was just a coincidence .

has anyone else had a pressure sore on/near the coccyx?

Over the last few months i have also had blood tests which showed low red and white blood cell counts, yet i have normal serum ferritin levels and High B12 and high folate levels,
would it be okay if you had a quick look here at my post about my latest blood counts, as my low red/white/haemoglobin levels may be why my MS has worsened?
these low levels must be due to the low calories/carbs i was eating on the wahls diet
http://www.thisisms.com/forum/post203069.html#p203069



my pressure sore has always been a grade 1-2 from the beginning,#
i know my weight is an issue too, its down to the wahls diet being so low in calories/carbs
but 2 weeks ago i started a tweaked swank diet, so low sat fats, no red meat or organ meat, but i now eat gluten free grains with 2 of my 3 daily meals, so eat big servings of wholegrain rice, quinoa, gluten3 oats, sweet potato and still eat the huge amount of organic veg.
so my weight is starting to increase again


what are your thoughts on this air pressure cushion, it seems to look suitable:
http://www.danmedicasouth.co.uk/product ... -cushions/

i have already requested for a wound specialist and occupational therapist referrals so hopefully it shouldnt be a long wait
in the meantime, do you see any problems with me using a hydrocolloid dressing to speed up the repair of the sore?

thanks again

Just a thought. This looks like a Pilonidal Cyst to me. I had one removed a few years back.

chiming in b/c i happen to be here..
thx for the thought gm..dc has been thoroughly down the pc road with this one, no dice!