Multiple Sclerosis (MS) Support Group
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Hi all
I thought I had posted this but must have started & not finished/posted.
I have really been struggling over the last couple of weeks.
I have had a lot of days where I shake/vibrate internally & shake visually. I have struggled to hold drinks so had most drinks (hot & cold) in containers with lids like the travel mugs for hot drinks & insulated cups or cup with a straw in lid. As for tea (food) I have it on a stable table with a gripping mat under the plate so it doesn't move & I still manage to drop/miss mouth, which I know is hard to do.
I have been having severe back spasms a lot of days & nights. This means can't get to sleep/can't get much sleep as back spasms which is also causing bladder spasms & flooding at night even though I have a catheter in & now on 3rd different one (at least). Only worked out the back is causing bladder when I didn't flood on nights with no back spasms & no bladder spasms when no back spasms. It has taken me a few months to work this out (yes I was a bit slow to work that out & cause/effect roll on). It has been a nightmare of pain from back & bladder as well as other pain.
In addition to this both legs are spasming a lot especially from knees down & left leg is worse & also burning pain in the left leg most days. Both feet often feel like I am walking on cushions & have no feeling other than in shower if the carer is a bit rough between the toes.
Both legs have got bruising on inside of legs, left leg is the worst with bruising from calf - just below knees, right leg also has bruising in these areas. Both knees are bruised on top, inside bruised near knees, some bruising on inside of top of legs.
Both legs are swollen from calves to below knees, on knees -tops, & inside legs are also swollen. Have tried acupuncture & he couldn't make any difference, have had x-rays, checks for dvt's, svt's (superficial vein thrombosis), & various other things including including vitamin deficiancies, & other disease possibilities.
The knees are painful to walk on & I tend to walk bow legged due to weak legs.
I can't walk far now & struggle to walk with walker even at home but determined to keep walking as long as I can.
My left arm/hand is often numb & sometimes pain is bad & hand often clenches & can't open at all. Makes eating very hard as struggle to hold a fork. Means David often cuts up my meat/fish fingers for me & makes sure veges are small or just potato gems & not hash browns so I can eat with fork in right hand. Even acupuncture doesn't work now.
My right hand has been badly bruised on the outside covering most of the back of the hand with dark purple & very noticeable.
I have bruises on both arms, under arms, top of feet, front of legs (top- calves), & basically all different parts of body.
I get severe neuropathic pain especially on left side of face from eye-chin & can't talk when it hits, it can last 10minutes as I found out when I had one in the neurologist's office last time. He was surprised at how strong I get them & rarely sees them that strong.
I am on a lot of pain killers including strong one's, spasm modifiers/control - baclofen, lyrica, tegretol, epilum, & heaps of other tablets.
I have been struggling since my last neurologist visit too end of May & had a lot to take in & adjust to as now been told I am secondary progressive ms, I had suspected it but to have it confirmed was very scary too & to get it in writing for something else.
I have mainly been commenting on other posts & doing less confrontational (writing it all down) things. I know I was a bit depressed about how bad my ms is & going downhill so fast too.
Sorry for long post but thought it is easier for me to put it down all at once so don't get confused on what/if I posted things too as confusion, really bad memory, speech & word finding, swallowing issues, & bad spelling are all part of my daily life which is a challenge.
I know others have it worse but to me this is the lowest/worst I have been other than during flare ups.
Just when I thought it couldn't get worse I now am having bowel issues getting lot worse. I am now getting bowel spasms & worse leaks almost daily & still waiting to hear from urology dept for referral appt. This has been off/on for a while now the spasms most days & getting worse. May have to go to e.r. to get it seen to earlier but I want a particular Dr there as he is fantastic & organised the catheter & tests originally.
Now add to that now I have been having hemiplegic migraines yesterday & today & really struggling to function at all.
My bowel spasms are tied in with my back spasms as come with them & get worse when back spasms are worse. At the moment I have had back spasms very severe for most of the last week & my bowel spasms have been for every day this week.
When I get the hemiplegic migraines they hit like an an axe to back right of head. Within about 5-10 mins I can't walk, talk, see properly (all circle/prisms). I have to go & lie down after taking strong pain killers & antihistamines for 4hours -all day, depending on how quick I catch it. Used to get taken to hospital regularly from work with them by ambulance. They had to mark my files with the information so knew which hospital had my records etc. Fortunately more home now. Had 3 since last Thursday & yesterday was worst one for ages. Going to phone Neurologist today to discuss issues.
I thought I had posted this but must have started & not finished/posted.
I have really been struggling over the last couple of weeks.
I have had a lot of days where I shake/vibrate internally & shake visually. I have struggled to hold drinks so had most drinks (hot & cold) in containers with lids like the travel mugs for hot drinks & insulated cups or cup with a straw in lid. As for tea (food) I have it on a stable table with a gripping mat under the plate so it doesn't move & I still manage to drop/miss mouth, which I know is hard to do.
I have been having severe back spasms a lot of days & nights. This means can't get to sleep/can't get much sleep as back spasms which is also causing bladder spasms & flooding at night even though I have a catheter in & now on 3rd different one (at least). Only worked out the back is causing bladder when I didn't flood on nights with no back spasms & no bladder spasms when no back spasms. It has taken me a few months to work this out (yes I was a bit slow to work that out & cause/effect roll on). It has been a nightmare of pain from back & bladder as well as other pain.
In addition to this both legs are spasming a lot especially from knees down & left leg is worse & also burning pain in the left leg most days. Both feet often feel like I am walking on cushions & have no feeling other than in shower if the carer is a bit rough between the toes.
Both legs have got bruising on inside of legs, left leg is the worst with bruising from calf - just below knees, right leg also has bruising in these areas. Both knees are bruised on top, inside bruised near knees, some bruising on inside of top of legs.
Both legs are swollen from calves to below knees, on knees -tops, & inside legs are also swollen. Have tried acupuncture & he couldn't make any difference, have had x-rays, checks for dvt's, svt's (superficial vein thrombosis), & various other things including including vitamin deficiancies, & other disease possibilities.
The knees are painful to walk on & I tend to walk bow legged due to weak legs.
I can't walk far now & struggle to walk with walker even at home but determined to keep walking as long as I can.
My left arm/hand is often numb & sometimes pain is bad & hand often clenches & can't open at all. Makes eating very hard as struggle to hold a fork. Means David often cuts up my meat/fish fingers for me & makes sure veges are small or just potato gems & not hash browns so I can eat with fork in right hand. Even acupuncture doesn't work now.
My right hand has been badly bruised on the outside covering most of the back of the hand with dark purple & very noticeable.
I have bruises on both arms, under arms, top of feet, front of legs (top- calves), & basically all different parts of body.
I get severe neuropathic pain especially on left side of face from eye-chin & can't talk when it hits, it can last 10minutes as I found out when I had one in the neurologist's office last time. He was surprised at how strong I get them & rarely sees them that strong.
I am on a lot of pain killers including strong one's, spasm modifiers/control - baclofen, lyrica, tegretol, epilum, & heaps of other tablets.
I have been struggling since my last neurologist visit too end of May & had a lot to take in & adjust to as now been told I am secondary progressive ms, I had suspected it but to have it confirmed was very scary too & to get it in writing for something else.
I have mainly been commenting on other posts & doing less confrontational (writing it all down) things. I know I was a bit depressed about how bad my ms is & going downhill so fast too.
Sorry for long post but thought it is easier for me to put it down all at once so don't get confused on what/if I posted things too as confusion, really bad memory, speech & word finding, swallowing issues, & bad spelling are all part of my daily life which is a challenge.
I know others have it worse but to me this is the lowest/worst I have been other than during flare ups.
Just when I thought it couldn't get worse I now am having bowel issues getting lot worse. I am now getting bowel spasms & worse leaks almost daily & still waiting to hear from urology dept for referral appt. This has been off/on for a while now the spasms most days & getting worse. May have to go to e.r. to get it seen to earlier but I want a particular Dr there as he is fantastic & organised the catheter & tests originally.
Now add to that now I have been having hemiplegic migraines yesterday & today & really struggling to function at all.
My bowel spasms are tied in with my back spasms as come with them & get worse when back spasms are worse. At the moment I have had back spasms very severe for most of the last week & my bowel spasms have been for every day this week.
When I get the hemiplegic migraines they hit like an an axe to back right of head. Within about 5-10 mins I can't walk, talk, see properly (all circle/prisms). I have to go & lie down after taking strong pain killers & antihistamines for 4hours -all day, depending on how quick I catch it. Used to get taken to hospital regularly from work with them by ambulance. They had to mark my files with the information so knew which hospital had my records etc. Fortunately more home now. Had 3 since last Thursday & yesterday was worst one for ages. Going to phone Neurologist today to discuss issues.
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Usually I get a daily influx of emails on health topics. An article from Dr. Mercola really stood out recently though because it mentioned that fat cells have their own mitochondria. Not only was this the first I'd heard of this, he also mentioned that fat serves a purpose in our metabolism. Another new factoid for me. The bottom line for me was to appreciate that even our fat cells play a...
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I just do not feel well and I really think that it's because I cried yesterday on my way to work about my Aunt who is in the hospital. I don't think that we will have her much longer. She is very frail. Now she needs help eating. So, this is the third time in a year that I felt this way after crying. I think crying releases toxins into my body. I also worked up a sweat at the gym...
3 thoughts:
1. Bruising doesn't sound normal. Tegretol could be responsible. I had to have a lot of blood work when I was on that.
"Important: your doctor will have discussed with you the possibility of side-effects of this treatment that you must let your doctor know about. Contact your doctor straightaway if you experience any of the following:
A high temperature and a sore throat.
A severe skin rash.
Mouth ulcers.
You start bruising or bleeding easily.
If you experience any other symptoms which you think may be due to this medicine, speak with your doctor or pharmacist.
Source:
http://www.patient.co.uk/medicine/carbamazepine-for-epilepsy
2. Try Valium 5-10mg for spasms (also called Diazepam,) Do you have medical marijuana in OZ? I'm told it help a lot.
3. Humor..... got to use it, watch it, read it to stay sane
4. I get Botox shots to uncleanch hand and wear soft hand brace at night - botox is expensive so your NHS may not cover it. My brace really helps.
Take care,
Melanie
I have got lots of bruises appearing for no known reasons & they have done all sorts of blood tests, dvt's/svt's, ct/x-rays etc. They are blaming it on the frequent use of methyl-prednisolone & cortisone tablets, creams & ointments.
My gp has already had me on 3 courses of 2 different antibiotics due to shakes. chills, sweats etc & blood in urine showing some strong infection, apparently common with catheter (spc).
Every time finish course of anti-biotics within days the sweats, chills etc resume.
I get excema all over my body so skin rashes are common.
I have had a different rash that varies from itchy/burning, catching on clothes & painful on my right arm from elbow down & odd bits higher up that my GP can't seem to get to the bottom of it.
Has done some tests but seem to be wiped off as too hard.
Didn't think about hand braces for hands, think I have some soft one's here but not sure if only more solid from when had what looked like carpel tunnel or similar when I was working full time. Will look later in drawer to see if they are ankle or wrist ones.
I am on valium 10mg at night now & neurologist increased to 3x daily, decreased to only one at night.
As you said definately need humour & mostly can use it but at the moment really struggling & can't see much to be humour about.
This is a sign that worries me as I use humour to cope with things. To me it makes me fear that I could be spiralling into depression but still fighting it.
I do get Botox for eyes as got more problems with right eye constantly closing & blinking rapidly.
We are lucky that so long as get referral & done through public hospital.
Marijuana is not legal here in Australia, not even medical use.
If you do access medical mj or the oil you run the risk of
- order being tracked & charged -gaol time,
- if do get it still run risks of being charged too.
Appreciate your response & ideas.
I know you are probably taking a lot of meds. But - are you on an anti-depressant? It does help with your overall outlook and coping. Good luck and God Bless.
I am getting myotherapy (deep tissue massage) today which always helps & have paid for a few in advance so can afford them at lleast till end of year. Same lady comes to my home each time which is good as she knows me & hoe my body works. I get 1hour which includes paperwork time.