February 26, 2009

This week has been trying to relax between Dr appts. had GP on Wednesday & he said another week off work which will tie in with my 3 weeks holidays so I will have 6 weeks off in total. Another course of antibiotics as the right arm is still swollen with cellulitis so hoping it goes down more. It has improved but still painful at times.

Thursday I went & saw my neurologist. he reviewed everything from the hospital & said mri of brain is the same so no new lesions. Thinks migraine may have triggered off the ms into action again. Took note that the hospital reported incontinence so is sending me for a bladder ultrasound to check on that. He is also sending me for a spinal mri, which I didnt even ask for. That will be the 1st spinal mri that I have.

Today I had a hydrodilatation.  It's not the most comfortable procedure to have done and  hurt but should make my shoulder better as it  is starting to become "frozen".  They  inject some local anaesthetic into it and then they use water with more anaesthetic in it to basically push the shoulder muscle back where it should be.  This is done using x-ray & manipulation.  It is still numb at the moment but starting to hurt.

Just got a call from ultrasound & that is booked 8th April so that fits in I hope. It is a Wednesday which is a work day so I will either go in late or swap days, will work that out when I go back to work.

Brain fog has set in,

13 February 2009

I was taken by ambulance to hospital on Tuesday 10th February. with bad migraine, diff to usual & weakness left side, vision & speech all affected. Have had mri & shoulder xray, no results till mon at least.david brought me in laptop & prepaid we got for on hols, so use it briefly.I can watch dvds etc at least to pass the time.Still cant walk much & only under supervision, rest comes & goes. may have rehab after so dont know how long.
Knew I was struggling but was trying to stay away from here. Food is disgusting so at least I will lose weight. 

On 14 February 2009 Still in hospital, bung/drip thing got pulled out & is infected, red/angry & swollen on inside of elbow & right around. Now cant bend right arm, left weak & got drip in hand so bandaged for drip of strong antibiotics. Possible dye leaked into arm when had mri yesterday with contrast rye. Whatever it is painful. Just adding to other probs.

 18 February 2009 My right arm swelled up right around from the wrist to just below the shoulder. Very red & painful & couldnt move it at all. Couldnt even have the arm touch any part of the bidy at all. High dose antibiotics orally & injections. The bung in left hand went in Saturday morning & out saturday night as already red & very painful to have the drip was even. It swelled & red to past wrist so struggled with everything. Wrist went down quick & arm is slowly improving. I was allowed home tonight so long as I rest only. ms side of things is slowly getting better & I can walk small distances & fatigue is very bad as well as concentration & speech still affected.

January 31 2009

I had gastroscopy & colonoscopy  with sedative. woke up a lot quicker than with anaesthetic & came home quicker. No bad results, biopses done & hiatus hernia found which is what causes reflux etc which I am on meds for & work mostly. Have to wait to see gastoenterologist  for more detail.

Nex day, Fri, had to go to hospital by ambulance with hemiplegic migraine, couldnt useleft  side, speech, sight etc stuffed. Strong drugs etc & home again.

Its got to get better soon, still feeling crap.

January 25 2009

 I am struggling at the moment with a few different "hurdles" being thrown at me. I got my blood test results last week & all ok except fasting sugar was 6.9 which is high. Dr is more concerned as diabetes is in my family (insulin dependant Mum & sister was but passed away at 20y.o. due to complications). I go for the glucose tolerance testing this Tuesday morning but wocnt know the results till I go back to him. Tuesday afternoon I have an appt with speech therapist. Thursday I am booked for gastroscopy & colonoscopy. I hope it goes ahead as I am in bad pain in stomach since a bad fall at home on Monday morning. I had a badly bruised knee & swollen right foot & sore hand (all on good side). I must have pulled tummy muscles too as they have been sore & getting worse since then. When I saw dr on Tues he said that as I am having a test this Thursday he wouldnt worry about it yet. Hopefully that will work out what is wrong.

I having more falls than usual as well as quite a few hemiplegic migraines which knock me out.
We have a long weekend here for Australia Day so Monday off, I have taken Wednesday & Friday off due to thurs tests so got the week off. Will be glad when this week is over & hopefully some answers too.

Today we went to the shops & I used a scooter to get around, I couldnt walk far without pain, The stomach hurts & then shoots the pain down my left side leg & arm so not comfortable to say the least.  It is getting worse every day so will wait till Thursday & hope for answers then.

We are having a hot week with temperatures in high 30's celcius so not looking forward to that either.

January 17 2009

I was struggling before the heat hit & now even worse. We have been having days of 36'c-40'c & more to come next week. Not sure what it is in farenheit but over 100'f  My left side has been weak & seems to be getting weaker & spasms more etc.
My headaches & Migraines seem to be getting worse again & more frequent again, they wear me out as well as paralyzing left side. have had 2 this week alone.
just to top it off i have caught something like a virus as have had no voice since Thursday (even David says he misses me chatting), been coughing & today aching all over, coughing, cant swallow food properly, vision comes & goes (goes all blurry or the eyes sort of spasm & close.)
All my joints are aching/sore & swollen in some of them. jaw is hurting & mouth struggling to open much, throat is sore. I cant get rid of the headache but at least its not a migraine today.
David has been wonderful, he let me sleep till 11am & had been to the shops for paper & rolls for his lunch & some cold & flu tablets for me. he has gone bowling thiafternoon & the sun is out so should be enjoying the day. he has already prepargd the vegetables for tonights tea so I dont have to do anything.
 I have a mri booked for Wednesday at 7.30pm this week.

January 5, 2009

I have been very frustrated with health issues at the moment.  I have had a lot of prickly, tingles & my skin has been red hot burning. As well as that my bowels & bladder are both getting worse. The antiinflammatory the Dr gave me made my arm even weaker & more spasms etc so I went back on brufen. Left side has been weak the majority of the time, cant walk far without being exhausted etc etc.

I got over the shingles but the pain under the chest/rib on left side. It took a while for the itchy to go thats for sure. Of course because I had the shingles everything else played up & the fatigue & pain were through the roof.

I went back to my original neurologist & he is getting all the records from royal melb so that he knows what has been happening. Also did some basic tests, poked near my left shoulder (that arm is very weak) & it really hurt. He ordered a ultrasound on that which I had last Thursday, had the results sent to my gp as well so got them today. No tears or anything but inflammation in the joints so as I was already on brufen 3 times a day he is trying me on a different anti inflammatory to hopefully ease the pain. Another option is a cortisone injection but that could damage the shoulder as well. That is a last course. I hope it makes a difference as the arm, shoulder & hand are often painful.

I am also going to have a mri which is booked in for the 21st January.

Still waiting on the colonoscopy & gastroscopy, have had the preadmission appt so hoping it will be in January.

Latest tests they are doing have also thrown the strong possibility that I have Lupus as well as ms so wont know that for a while.

10 November 2008

I am getting fed up with the run around from Dr's & blaming everything on ms. I am still waiting to hear from the Royal Melb re procedures & just want it over & done with. Went to GP today for scripts & other issues. Apparently my back pain is caused from bungled lumbar puncture & I am stuck with it. Same as right eye flickerin & closing, part of ms & couldnt do anything unless I take cortisone & I said no thanks. . At least he gave me something to help with the dairroeah I am having 6-10 bowel most days so hope that helps. Why do they blame everything on ms? (rhetorical question)

I have an appt at Monash neurology on 20th Nov so hope he is prepared to take me on again & offer some help. I have numerous other issues rearing their head & not going away makes it very difficult to keep going as normal.
The neurologist at Royal melb wont see me till after the procedures so that could easily be next year before I see him. That sucks big time when I havent seen him since July, have had a major flare up & new symptoms resulting from it - thats partly why I am going to see about going to Monash.

On a cheeryer note I have a friend coming to stay tomorrow (Wed) till next Monday from NSW so looking forward to having her here. We have known each other since grade 2 so a loooong time.
Spring is throwing all weather at us from heavy rain to heat which is what we have now & not enjoying 28'c at all.

 

I was due to have a colonoscopy & gastroscopy today at a day procedures centre. I was hoping to get some answers about my low iron levels & other blood tests results.

Would you believe I went through drinking all the crap, sitting on the loo most of the night, nothing to eat this morning & then went down there. filled out all the paperwork, got changed into the gown, had seen the dr who said it might be a bit difficult with your medical history. Then I saw the anaesthetist & he checked my mouth & some history details & then said that "you are a very high risk & I dont think you should be done here where we dont have the back up of a hospital" He said there is a danger of brain injury or death if I needed oxygen or something went wrong. I basically went into a shock & couldnt decide what to do so asked him to call jackie (friend) in from waiting room. She came in & he explained the risks to her & that he would recomend that I be done at Frankston. jackie said that she agreed with him, thanked him for being honest & we left. (I was dressed by this stage), got my money back (paid as you go in) & came home. Still in a bit of shock from what he said & dread going through all that stuff again.
Oh well, better to be safe than sorry & I  am glad they were up front with me.
Have been eating since I got home.

I am still on steroids, down to 12.5mg for the last 4 days & drop to 5mg tomorrow for 4 days than off it altogether. I have put on weight & have the moon face that goes with it for sure. If food is not nailed down I will eating h it. Hopefully that will decrease soon, I am trying to eat more fruit but the chocolates etc are so much more satisfying!

My right foot has gone back to almost normal size though still black & bruised. I can walk on it a bit better but still very slow on the walking & using the walker most of the time even inside.

my homecare worker hung a load of washing out for me & I managed to bring it in later, was lovely in the sunshine (spring here ). I am getting some things done around home when I have the energy in the morning so feeling like I am achieving somethingn.

my right hand is still purple - some people said it looks like a bad burn, cant hide it as it is the wrist & lower arm. More annoying is that it is now crampling as well & that is my good hand.

When I went to the local Dr yesterday he said they shouldnt have even tried that procedure & should have had pressure on it for quite a while after it. Cant do anything about it now, just wait & hope it will fade.

I have gradually been putting things in our caravan as we are going away for a week on Saturday so I wont be around after tomorrow for a bit. We are taking the computer with us but I wont be on it much. We will be with the caravan club to start with & then us so it will be nice & relaxing.

September 2008-09-25

Since I last wrote I ended up with the continuing virus & then a ms flare up. I went to the Dr on Monday 15 September & he put me on oral cortisone to try to control the flare up. At that stage I was having a lot of trouble walking as my left leg was stiff, the foot didn’t lift, and my left arm was weak & couldn’t hold much or do much at all. My memory had been decreased & I was having trouble concentrating. The cortisone tablets seemed to help & I got through the week with major fatigue, trouble staying awake as well as the physical side of things too.

Saturday I woke up in severe pain. My left side was totally numb/paralysed, I couldn’t move it at all. I was lying on my back so stayed in the same position trying to stretch the muscles. This did not ease it at all. David woke up about 5am & I was groaning. By that stage I was having back spasms, trouble breathing as well as the paralysed left side. David tried to give me a drink & strong pain killers but the water ran out of my mouth so he pressed my alarm button & got an ambulance to come for me.

The ambulance came and they were worried about my breathing & all over pain so called the mica (special ambulance) but they were able to stabilise me to go to hospital in the usual ambulance. I was seen promptly & hooked up to ecg’s, cardio something & numerous tests. I had a ct scan of the brain to ensure that I had not had a stroke, a chest x-ray to clear that, blood taken & the drip line put in.

I was seen my numerous doctors who did lots and was told I would be admitted. I was taken to my room which was a private one about 5.30pm which was good. I was hooked up to a fluid drip and later to the methylprednisolone drip for the ms flare. Needless to say I was stuck in bed & could only move with assistance. David had been with me in the morning & came back in the afternoon so was with me when I was transferred.  I was given a meal which David helped me with as my left side was still totally immobile. I was given strong pain medication to be able to sleep as my back was still spasming as well as other pains.

Sunday I was put on a very strong blood thinning injection. I was lying in bed all day Sunday & allowed to sit up in the bed for short periods. I was connected to the oxygen till the Wednesday. I stayed in bed until very late in the night when they let me transfer to a commode for going to the toilet as they needed me out of bed. Of course with the ms my bladder control was nonexistent. I did have phone calls and some visitors which was nice. David spent most of the time with me as well. I saw the physiotherapist who sat me on the side of the bed but didn’t let me stand up as I was very weak.

I had a bad night sleep on Sunday with bad spasm on the right side (my dominant side), it went stiff same as my left side so was very scary. The nurses gave me some pain killers but ended up calling the Dr who gave me valium to help my muscles relax. I did manage to get bits of sleep during the rest of the night-morning.

Monday morning they did fasting blood tests especially for sugar levels as they had been high The Dr’s came and explained that due to the methylprednisolone my blood sugars were extremely high so would have to be monitored, possibility of insulin injections, this scared me. There is also the possibility of having sleep apnoea which I will be tested for later on as an outpatient.  The physio came and had me walk to the door of the room and 1 room away then back. I was then allowed to go to the toilet with a nurse with me. Later in the day I was taken for a lung x-ray which was a long one with my arms having to go into all kinds of contortions. Thankfully that came back with no blood clot which was the desired response.

I had an arterial blood test done on the Tuesday to try to work out why my breathing as still shallow & my saturation levels so low. This is very painful to say the least & my wrist is black, blue, purple & swollen from it. It did show that my oxygen levels are on the low side so can be managed with ventolin to open the airways. My right foot by this stage had swollen underneath & was also black & blue so the Dr checked that out. It looks like it is bruised, infected but not broken. Very painful to walk on though & that is my good foot.  

The physiotherapist came on Wednesday morning & assessed my waking. He was pleased with how I walked slowly with very little steps so didn’t need to see me anymore. The Dr’s came again & said that everything was coming through good; the methylprednisolone had helped the ms so now on oral cortisone with decreasing amounts and hopefully home next day or that night. The team of Dr’s came back later, discussed medications, amount of time needed off work & follow ups needing to be done. I was able to go home finally when David came that night.

I will have a lot more follow ups to be done as outpatient & specialist visits, my blood sugar levels will need to be monitored & hopefully when off the cortisone will go back to normal.

The only other change I will make is to go back to my original neurologist at Monash hospital as there were difficulties getting information from one hospital network to the other. I am happy with that as it means that follow ups will be done closer to home.

That’s been what has happened since Saturday & I will be off work for another 2 weeks to recuperate.

I am home & I am mobile which means I will improve in time, just very scary when it is all happening.

I was fortunate in that right the way through i had good care with nurses, dr's & everyone else. Saw speech therapist, ot, physio, dietician too. I am fortunate that we have had the modifications to home & I am connected to the local ms exercise groups so was able to come home without rehab.

I have been taking it very easy & not doing much at all. Friday I drove to the local shops for a few things but found that I was not as clear vision as I thought so not driving much or far for a while.

Friday night a friend picked me up & we had our ladies night (about 6 of us get together for coffee & chat). It was a lovely night with lots of laughs which I needed. They kept giving me this pure dark chocolate (supposed to make you go) as I stumped them all when I said I hadnt been (bowels) since prev friday & for someone who can go 8 or more times a day it was a relief. The cohocolate has done nothing & I have taken coloxyl every day too. I dont feel constipated though so guess sooner or later it will just decide to go & then I will wish it didnt LOL.

Saturday David played lawn bowls in the morning & then we went to mcdonalds for a chocolate frappe - I had been craving one since in hospital. It was delicious! We relaxed at home mostly. I had  washed a couple of loads & David hung it out & brought it back in.

Today has been a lovely day. We went into Cranbourne & did the shopping for this week & next, took the scooter in there so that I could manage it. We have done most of 2 weeks as next Saturday we are going to Traralgon for a week in our caravan. There are plenty of shops there but it is good to have the food before then you dont have to chase around or decide etc. Shame is we never organise ourselves like that at home, LOL.

We went out to the caravan & checked what we need out there so can top it up gradually during the week. I am doing it gradually & have a list so I know what I need to put out there.

 

I am gradually improving, still looking very bruised & purple/black marks etc. most of it is covered except the hand. The right foot is still swollen underneath & very red so I am walking tenderly. Mostly annoyed that it is my good foot that is stuffed up, means that my left leg is still stiff & foot numb & right one is painful & burning. Makes it hard with both feet sore.

 

I know it will get better with time, just have to take it easy.

Hugs, Sue

22/08/08

David was rearended earlier this week, he got no ill effects from the car accident PTL!
Instead he got my virus. We both went to the Dr today & he said David is not too bad, normal therapies will help. As for me..hmmm...he not happy. On the antibiotics I had less control of both bowel & bladder (had jokingly said to him when he said they might cause diaroeah whats new I already have ibs) but when I told him that when I saw him about 11.30 I had already gone at least 6 times & leaked he has put me on a different tablet & on cortisone too. Hope these help as I am no better than at beginning of week.
In regards to the job/pension review I spoke to a lady at our ms centre who focus on employment & she gave me lots of practical do's & donts for the interview so I am not so worried now.

29/08/08

Well I sure had a busy week & the centrelink interview went well. I took a friend (Sharon) with me. Had a lovely lady interview me & a few times I went mentally blank so Sharon was able to help me explain. She was also able to add things that I forgot. The lady said that she would write the report stating that I should be on the disability pension & able to work between 8-14 hours a week (averaging over the year which takes into account time I have off). The interview took over 1 hour & I was exhausted afterwards. Glad I had Sharon with me as she was a great help & drove home as well. I would sure suggest to anyone who has interviews like this to take a friend or family member who knows what you are like on good & bad days with you.I worked Thursday & friday & went to the neurologist after work on Friday.The neurologist did not even do his normal examinations. He looked at the results of the visual evoked potentials & said my eye sight is showing decrease & slow reaction so there is roblems there.He was more worried about my blood test results. I showed him the results from the local dr as well & he said my iron levels are dangerously low, especially as I am on iron supplements & multivitamin & not having periods (full hysterectomy over 15 years ago). He wouldnt even talk about any thing else. he said it needs investigation as it could be bleeding into the bowel, polysps, scar tissue, or cancer. Scared the crap out of me. He mentioned colonoscopy, endoscopy & & has referred me to the gastrointestinal area for the investigation by one or 2 of these (I was stunned by the previous suggestions & cant remember what he has referred me for except he said it is urgent).
Last night we had our girls night where a few of us get together for coffee & chat so I was able to share with them (had already told hubby). At least they know what is happening.
This morning we took the car to get it assessed & repaired so left it there, will get it back hopefully next saturday. We are going to the opening of the lawn bowls today, there is a lunch first & then David will bowl. Should be a nice afternoon out.

07/09/08

Have had a quiet weekend , went to the shops on my scooter with David & charlie yesterday & Charlie enjoyed his walk. Marian came over yesterday for a visit & that cheered me up. Today I have done nothing much, loaded music onto the computer & ipod which is relaxing & Wendy rang me from NSW so chatted with her for about a hour. Friends are certainly great to keep in contact & cheer me up. David is playing lawn bowls on a Saturday afternoon which he enjoys.

I know God will never give me anything I cant handle.

I just wish he didnt trust me so much.

Mother Theresa