Australian MS Bandsters

[susannah 2]

Hey, This is a thread for those of us with lap bands that have Multiple Sclerosis. I thought we could discuss how we are living with the disease, current issues about MS related to research and meds. Basically give each other a bit of support, and have a few laughs. At the rate we are going there will be more Bandsters coming to our site that have MS.

Susannah

[susannah 2]

Hi, Bronnie when do you see the neuro regarding your MRI results? Hopefully there will be no new active lesions, and everything will be fine.

Susannah

[susannah 2]

Hey Girls, Here are some good MS info sites

www.thisisms.com

www.msfacts.org

I would be interested to hear about your first ever symptoms, and how you were eventually diagnosed.

Susannah

[kebsa 1]

Hi Susannah

I had been in a wheelchair for almost a decade by the time I was diagnosed, I am an amputee and have condition called complex regional pain syndrome. As a desperate measure to get severe pain under control I had a pump surgically emplanted that gives medication direction into the spinal Fluid to control pain ( like a continous epidural only even more effective). It did control my pain but the long term side effects of giving meds this way can cause wierd symptoms, some of which they are still learning about. So when I started having odd but intermittant muscle spasm in my hand and leg, occasional foucsing and depth perception problems, loss of sensation in varous areas it was easy to assume that it was the medications and the pump. Then about 4yrs ago I became really ill, I had a low grade fever and such severe fatigue that I could not even sit up, vision problems etc etc- I spent the best part of 6 months in hospital! At first they thought I had an infection around the pump or hidden infection elsewhere, that was excluded, then they thought I had lymphoma and various other tumors, then Q fever and various other exotic stuff includng malaria- all were excluded. They eventually said maybe lupus but like MS that is hard to get a specific diagnosis so they were not sure- eventually I improved but still didn't have an answer. Then I had started having bladder and bowel problems, again put down as being related to excess weight plus the pump. Finally I started having severe vertigo that would last for 2 to 3 days at a time. My GP sent me for a CT scan as I have a strong family history of brain tumor and other cancers- that was cleared but the report said there were some suggestions of demylinating process ( CT does not show this very well usually) so had an MRI that showed I had a large number of lesions ( in excess of 40). THey now say that it is likely that most of the symptoms were ms related and that I hve had it for a decade or more- the long period inhospital is now thought to have been viral and the low grade fever made all the MS symptoms like fatigue worse.

So I was officially diagnosed august 2004 with RRMS, I'd been having swallowing problems for wellover a year at this stage and it had been assumed that I was just not being careful enough. Once I was diagonsed the MS was found to be the culprit.

I started on copaxone immediately but after 4 months had a life threatening reaction ( anaphylatoid reaction, massive facial swelling, airway obstruction etc), started on betaferon after that. I had 2 true relapses in the past 12 months, one that affected the use of my right arm and my vision ( right arm basically normal but still struggle with my vision in hot weather, when ill or tired) then last september i lost nearly all movement and feeling in my remaining leg- that scared me, I can usually stand for long enough to transfer from chair too chair but could not then. THankfully I have most of the movement & strength back but still reduced sensation.

None of my symptoms seem to go completely these days but I am told that even with RRMS that is not uncommon with a high number of lesions. I am pretty good most of the time and know that hot weather, heated pools, infection, getting overtired or run down will cause a pseudoflare. Over using my right hand will lead to severe spasms that medication does not help- I can type but cannot hold a pen to write a complete sentence.

I was actually relieved when I was diagnosed, Having all these wierd symptoms that could not really be explained, just guessed at was always worrying- Once I was diagnosed and learnt a lot more about it, understood what is likely to make things worse, I can at least avoid things that trigger or worsen symptoms and hopefully the betaferon is slowing things down

Latest research suggests that even when we do not have active symptoms the inflammatory damaging process is still occuring- so while they once used to recmommend that you waited until your symptoms started being an issue before starting immunotherapy, they now generally suggest that you start ASAP to avoid/reduce accumulation of lesions.

my only frustrations have been how others sometimes percieve you when they know about the ms ( had particular problems with a supervisor at work whe she found out- got very nasty and very stressful), number 2 would be the tendancy for some Doctors to assume that every new symptom or illness you have is MS related- that really bugs me

I'd love to know your stories, as for research, there is a fantastic journal from the UK that is completely free that I subscribe too- its from one of the major MS organisations overthere but I can't remeber the name at present- i will post it when I find it. The company that supply betaferon occasionally send out DVD's of medical conferences held here in Australia_one from last year was really interesting talked about a long term study ( over 16 yrs) of following people with MS on immunotherapy and possible future directions- Again, if you are interested I can find the details and PM you

[susannah 2]

Hi Karen, Thanks for posting your story. Man you have been through the ringer. My first dance with MS came when I was 27. I woke up one morning and all the fingers on my right hand were completely numb. The numbness spread to my whole hane and then my right arm, side and right leg.

My legs were so stiff and walking was hard. I had some bowel and bladder probs. I went to casualty at The Royal Melbourne Hospital, as I was scared stiff.

They examined me and ordered an MRI. They must have suspected MS, but they told me I had Transverse Myelitis. I had other attacks that followed, and they at last diagnosed me in 2003.Most of my lesions are in my spinal cord, and I have some in the brain also. I probably have more now.

My neuro spoke to me about taking Rebif or Beta. I am currently not taking meds, I can't cope with the thought of having to inject forever. I may change my mind on that, not sure. The meds do not cure this illness.

I had an attack 12 months ago. I have some permanent damage, but I am largely in remission right now.

I wonder when it will rear its ugly little head again, and in what incarnation?

Susannah

[kebsa 1]

They often used to diagnose transverese myelitis or something else after the first attack, the diagnositic critera sued to say that you had to have had 2 seperate attacks over a certain period of time ( and a few other things) before they would say you officially had MS. At 27 yrs old that would have been so scarey- when my leg went it was the same sort of thing- slight numbness progressing to total loss of function, loss of bladder control etc in a few hours, it was scarey enough when I knew I had MS but for your first encounter- yikes!

As for meds, it is a personal choice. I know it will not cure me but I will do what I can to limit the accumulation of more lesions- the more lesions you have the higher the chance of disability. I felt that as I was already wheelchair dependant I needed to be very proactive- hence I went down the path of immunotherapy. Made me feel a bit like i had the flu after shots for a couple of months but this stopped- now the only sde effect is red blotches at injections sites- that I can live with

There are some thoughts about dietary changes that may be able to reduce the bodies infammatory reactions in ms - the schwank diet has been around for a long time. after my last relapse I went to the MS multi D clinic for a variety of specialist assessments and advice, once person I saw was a dietcian who spoke about dietary things-

limit Red meat ( white meat & Fish are fine)

better to have slightly lower Iron levels than normal as inc levels can lead to oxidation/inflammatory changes

folate and b group Vitamins are protective

Omega 3 oils are antiinflammatory in nature and therefore very beneficial

Omega 6 oils, trans fats, saturated fats should be limited

Vit A is not good in large amounts

be carful of herbal remedies such as echinacia that aimed at boosting immunity- Ms is autoummune, your immunue system is already overactive in terms of attacking you

It was certainly interesting stuff, most of it was what I was doing anyway with weight reduction stuff- except I hate oily fish

As for the thoughts about where MS will pop up next, I do wonder that at times too- i guess its natural. I have lesions in both spinal cord and brain. I have not had a recent MRI ( hate that claustrophobc sensation- its like being in a coffin when you weight over 150 kgs)- my neuro doesn't bother with routine check mri's, he thinks they cause more anxiety than good. "Lesion load does not always correlate with disability" his words. The very nature of MS is that you can go for years and have little or no progression or you be unlucky and have rapid change. I met one woman who has had no increase in symptoms for 30 yrs, but I have a neighbour who is not even 45 and is totally dependant. I won't say I never get anxious about it but generally I try to just take it one day at a time and forget about the "what ifs"

[susannah 2]

Gday Karen, I tend to agree with you on the scanning, I am overdue for it, but I know they will just show more lesions. I know I have MS, there is nothing new in that. I just deal with it as it comes up really. Last year when I had my last attack they just gave me three days of IV methyl pred. They suggested that I have a more regular steroid pulse, but I don't handle the roids well at all.

I prefer more natural ways to control the disease. I know some that swear by the Swank diet.

I am really concentrating on getting my weight down, and all things banding at the moment. For the moment the MS is dormant, but when it awakens again, as it will, I will hit it with all guns blazing!:biggrin1:

Susannah

[bronnie70 0]

Hi Girls.... At the age of 21 (1991)i was laying on a beach sundbaking and felt tingling in my fingertips on both hands. This progressed over the following few days so i saw my local GP. He said it was nothing. Then i saw another GP and another and another.

Then i finally saw a GP who would listen and he said he suspected 'carpal tunnel syndrome' so sent me to have that tested.... ho hum it was normal. Having commenced my Nursing training i actually asked everyone if i could have MS... all the GP's said NO...

Then in 1997 following the birth of my first child i developed blurred vision and increased sensation problems. I also kept dropping everything i picked up ( had to go an invest in glasses and plates!!!) Once again from GP to GP. Came across an elderly GP and i asked him if he thought i could have MS. He looked at me straight in the eyes and said... i think you have. Then the neurologist ( Dr Matkovic WMH), visual evoke test and MRI. 23/12/97 i was diagnosed with MS.

2000- i had my second child and then in 2001 commenced on betaferon.

MRI repeated last month and little change from previously MRI in 1997.

I have been left with quite a lot of sensation loss in my right hand ( Have to be careful with Water temperatures etc) and slight ongoing tingling in all other limbs. I have only developed occasional leg spasms over the past 6 months.

so.... thats my story.

[kebsa 1]

HI Sussanah

I can relate to the steroids, I have very mild type 2 diabetes- my levels are usually in the normal range- the steroids send it sky high. TO be honest I am not sure that they helped

Hi Bronnie

Thanks for sharing your story- did you finish your training? are you still practicing? I started my training in 1980, I am Still registered but can't do the hands on stuff these days_ I work in a health call centre giving advice over the phone, problem solving for clients in the community, taking incident reports from the public health system etc. I miss working on the wards but I am jsut really glad to be able to still practice.

Exposure to heat is not good for me, makes all my symptoms worse- Its in the mid 30's here today and I avoid going out the front door if I have too!

[bronnie70 0]

Hello... yes im still a practising nurse at Western Hospital. I only work 2 afternoon shifts per week and try and space them out as 2 straight absolutely kills me fatigue wise. Im okay with the heat in Victoria until it reaches about 35. Queensland is a different story... i made the mistake of going a few years back mid-january and the humidity was so bad and really made the MS symptoms increase. Never again!!!

[kebsa 1]

2 shifts per week are enough for me too, I work every saturday and sunday lates shifts- Its a bit antisocial but makes the best out of penalty rates!!

I have promised myself a holiday when I get to goal, I used to travel a lot but have not since being wheelcahir dependant- At the moment I am leaning towards an Alaskan Cruise- no problems with heat intolerance!!

[susannah 2]

Hey Girls, I have permanent numbness in my left hand now. Lucky I am right handed. I went through a stage where I was falling over a lot. I have mornings where my legs are so spastic that they don't want to cooperate. Then the next day I can be fine. One of the oddities of this illness.

I have never had Optic Neuritis, but I have had the bladder and bowel issues, which is quite mortifying let me tell you. I am very stable at the moment.

My muscles twitch all day long though. Do you guys get this? I can se the muscles jumping up through the skin. I am so used to it now that I hardly notice it.

Long may my remission last!

Susannah

[susannah 2]

Hey, Forgot to say that I can't have a hot bath anymore. It has to be warm only. I find summer hard, but you can get a concession on your electricity bill in summer if you have ms. Susannah

[kebsa 1]

Definately understand about the bladder and bowels- been there done that!!

My remaining leg has very limited sensation, and reduced strength, when I am tired or over heated etc it feels like I have weights tied to it.

I do have persistent vision issues- more to do with muscle coordination and focusing than optic neuritis, I did have an epsode of optic neuritis a bout a year ago though.

Muscle spasms are a problem, particularly my right hand, any action that requires thumb and forefinger grip, or persistent muscle action will trigger these really strong spasms that make my hand claw- once it happens its painful, hard to stop and makes my hand unusable for hours. Happens in my foot/ankle, left sided abs, right sided facial muscles as well but it is not as much as a problem as my hand. Tried baclofen but as it is really intense cramps related to activity, t did not do much good. they said they could inject the muscles with botox but this would make my had unusuable so I have not bothered.

My co ordination is not fantastic, even things like typing are affected- its like I have dyslexic fingers- the letters are usually there but just not in the right order.

As I said before, if it were not for the wheelchair, most people would not see the MS and I know that can make things tough for some- people do not realise the impact the condtion is having because they are not easily visible. The fatigue seems to be the one that is most misunderstood, people assume that you just feel a bit tired and can pull you socks up and get on with it- they do not realise that it is such a deep, profound and bone aching degree of fatigue- at its worst even sitting up is tough.

I also find that I get more emotional than I used to, I cry at the drop of a hat in a soppy movies- never used to do that- don't know if it is the ms or jsut getting older!!

[kebsa 1]

I dont thng we can get the concession here in SA, but I will ring and talk to them to make sure.

As for the hot bath- I don't know if it is true but I was told that before they were able to do evoked potentals and MRI's etc. one of the ways they used to help confirm MS was to dunk a person in a hot bath and if they came out feeling like limp spaghetti it helped to confirm diagnosis.