June, July 2014

Hi all - June & July2014I 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.

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.




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. 
 Phoned Neurologist receptionist so she can let neurologist know that no letters have been received from any of the one's he said he would refer me to today to discuss issues. It appears that no referrals were sent so could he please do them & note down that I rung to say getting worse lots. She made notes of it all & said she would pass it on, this was last week.


This last week I have had severe abdomen pains so had ultrasounds of kidneys & abdomen & now waiting on the results of x-rays of bowels to see if have adhesions or constipated which would need more surgery & I would be waiting a while for a public hospital bed for that. I have not been able to eat much till today -Friday, from thursday last week & my Dr doesn't think I am constipated due to not eating much.






I am still waiting referral to Botox to stop spasms in back etc. Waiting on urology referral & now bladder & bowel leakage & spasms a lot. Tried 3 different catheter size/make/material & no luck. Waiting referral for injection for stopping pain in face/neuropathic. Chasing up with receptionist at royal melb on mon, she has organised some of it in notes to ask neuro. Also organising some myotherapy for rest of year to try to help it.Got those pressure stockings for free today so going to see if helps as go past knees. Hope they fit. As usual, head spins so lists everywhere.

have also bit the bullet & got myotherapy tomorrow after horror time with spasms from head to toe right down back bone, bladder, bowel & face & could only doze sitting up. Will cost bit but worth it to get some relief, have booked tomorrow & again in about 2-3 weeks.The support stockings I got are good fit & go right up over knees etc & do seem to be making walking a little easier & got all my exercises done too 0 which is unusual. I am hoping they decrease fluid build up too but at least help a bit. Slept last night with extra pillow & think only woke couple of times but straight back to sleep again so good.Will know by end of week if much improvement as usually by thurs I am struggling if not before.

Can anyone shed any light on this symptom I am having. I have had stomach spasms coming & going for days & thought they were bladder/bowel spasms. Yesterday my nose was running & I thought this morning I was in for a cold with sore throat etc.My worst & worrying issue is that last night we tried to have a light meal of baked beans on toast & I ate less than a 1/4 of my serve after only having 4 small dry biscuits all day, today I tried to have breakfast & nope, cup of soup for lunch & 2 dry biscuits & cheese for tea. Ots not that I am throwing uo, just can't force myself to eat. I have tried to have maxalon to stop any nausea before eating, taking gastrostop which eased the stomach spasms & sstill can't swallow more food.I'M SCARED of what's happening as I have had 2 bowel resections/major surgeries already. Both were nightmares with length of time in ICU & hospital. I don't want that again but hubby keeps wanting me to eat or get it seen to -Dr. After my horror start to the year I don't want more hospital stays as emergency. Maybe I'll give myself some of the sleppery elm & clear out tummy tomorrow & might help?? Only need 2 capsules for me where it says to take 4 Lol. Still got to find some humour,







ON THURSDAY NIGHT WE RANG AN AMBULANCE & they said that not much more a hospital could do as all tests being done but phone Dr's & see if we could get another tablet that you put on you tongue & it dissolves & it is stronger. They left & David rang up & got put through to the Dr & he left the script at the counter for David to pick up & fill immediately. That worked great & only had to have 1.


Saw Dr again on Friday & tests did not show any diverticular disease but he has given me an antibiotic to try to ease it.




Still no answers so could be adhesions. Hope not as that is surgery & I would have to wait ages for hospital bed.


 


This weekend we planned to go to a tribute to Neil Diamond Hot August night & got there saw first half & I was seeing double which was disconcerting. I could see 2 of Peter Byrne (doing the tribute), 2 of the conductor & 2 of the lady singing. I couldn't focus at all & couldn't work 

out what I was watching & started feeling 
really sick & dosing off. We came home then as we have seen it before at a different venue. We ended up leaving at interval as I just couldn't stay there.
The last 24 hours I have also had pains under the chest & the neck has been very painful, restricting movement. O am still shaking very badly & spilling everything, that has been worse since last Thursday. 
Today I have been having trouble with some focus too.We did some shopping
 
This has been typed over a period of time so sorry for any repeats & changes of type