Ups and Downs with IBM

Author: Maureen Hume

I will start my story about my journey with IBM with many years before diagnosis, way back to those now carefree days.

First thing was I couldn’t walk as far as I used to. I was quite a long distance walker as well as doing Aquarobics about three times a week depending on my work. Another love I had was swimming, I was very active most of my life so miss the swimming and Aquarobics and walking and now I can’t access a pool at present but where I go for rehab gym they are building a hydrotherapy pool starting in February. They assure me they will be able to get me in and out. Great joy! It will take them until December to build it.

I used to walk up to 16 kms and gradually over the years it was less and less. Now six minute walk is an effort.

The next thing was the falling, which I did quite often. My husband would say “pick your feet up” even though I did, I still fell; not tripped, just fell.

When we moved to the country to live,  it was my dream. Our home we moved into was just what I had imagined moving to the country would be like. Lovely slow combustion wood burner heater; everything wonderful.  We had to do some work inside and a lot outside so I made our little 5 acre land into a lovely cottage garden except for a couple of acres for my Suffolk black faced sheep. I also fulfilled another dream; breeding  my lovely, quiet Bullmastiff dogs and showing them so as usual. A very active life.

Then I noticed I couldn’t walk so far and our son said, “Mum I think there is something wrong with you” after he had seen me fall and slacking off on the distance I could walk.
I went to our GP who said that could mean nothing or a lot! I also suffered with a bad back as most of us do. He sent me for a MRI of the spine and the report was as usual for me.  Two bulging discs and a little Stenosis of spinal cord, nothing new there. He then decided I should look further into this as I was in so much pain. Our sons wife, an ex nurse, said she knew the best surgeon for backs. Off we went to Sydney, a four hour trip, for the appointment that was for 1 pm.  We decided, as we were running on time for the appointment, to skip lunch until after the appointment thinking it would only be a half hour if the doctor was on time. We waited and waited and thought he must be having his lunch, we were rather envious of him! Eventually he came out and called me in, then he looked at Don and asked if that was my husband and would I please ask him to come in. I had never had him in on appointment before so I was a little worried. When we went in he asked where I’d had the MRI done and said he would like me to have another at a place near him. He explained it showed no muscles between shoulder blades to tail bone. After about an hour long appointment discussing an operation that wasn’t going to fix me he stated what had kept him was he was calling all the specialists he knew to see if any had seen it before. No one had. The MRI people in Orange had only seen the normal things. I think I should have gone and told them what they had missed.

After new MRI we spent about another hour with him.  Apparently I only had fatty tissue holding me up. I said lucky I’m a fatty type person! Not that sort of fat! Now wants to write me up in medical magazines and put what he saw on the web to see if anyone knew anything to help me. Me who was so tough and strong!

We of course never had our lunch or me dinner, too upset wondering what I had done to myself, probably all the exercise I put myself through, off home again promising we would keep him informed.

I was just letting things slide again thinking not too much wrong, an occasional fall and not able to walk too far but still able to walk 3 kms so that would do.

Our son came to visit and once again was worried  He had a list of Neurologists to visit. I had a look at what we had around our hometown of Orange and low and behold a Muscular Neuro. I rang him and a five month wait but I thought that was okay. Steve wasn’t but I had my way because it was local.

Dr. Gordon was a lovely caring man but had never seen anything like it but decided to do electrical tests, not very nice but it still really didn’t show much. Prednisone was now ordered in case that may help while he rang around to see if anyone knew about it.  Funny but not too long after him seeing me he found someone else whom he saw.

The prednisone I thought helped but as I really still couldn’t notice anything else but falling wrong with me, I happily took it turning into a big moon faced person and quickly gaining weight which I’d always been fighting. Not happy now! I was on 75 mg of it for a long time; not sure exactly how long now but years I’d say!

Now with a diagnosis of PM, I started looking on the web but not much info then. Very soon I needed a walking stick.

About this time Dr Gordon started me on Methotrexate although I can’t remember how much. I took it for about a year but it was no help. Next was Imuran and I took that for three months when skin cancer doctor checked what medication I was on and told me that was why I was having so many skin cancers removed surgically each month. He said Imuran never left your system, ever, and please could I stop it. Then I tried IVIG for at least 12 months but felt I deteriorated instead of helping. Next was Antibiotic treatment for 6 months on a very high dose but still no joy! All the time I was slowly coming down on the prednisone. I stayed at 25 mg for years only coming off it very slowly over about 2 years to be able to qualify for trial.

Not long before I knew I couldn’t cope with my wonderful lifestyle of only 12 years. Sold up and moved into town, decided I could still cope with two or three steps and didn’t need flat accommodation yet; how silly we were. Only six months in our new home and I couldn’t walk out to our letterbox because I had to walk back up a steep drive; hadn’t thought of that problem.  Waited another two years to decide to sell and actually selling. Lucky we found our lovely flat all around, Villa .

I quickly found I was getting worse and got my wheelie walker which I could also sit on. It became my chair for quite a few years until I graduated to a Motorized wheelchair while I was out.

Gradually over the next five years we have ramps, rails a wonderful converted to disabled bathroom. I have a wheelchair first a manual now a fair dinkum one I call it my black 4wheel drive ( really 6 wheel), I always wanted a black 4 wheel drive. I had a silver one then a lovely bluey purple one but not black. We now have a VW Caddy Life short wheel based that Don can put ramps up and he has controls on back of chair to put it in. I now walk out with wheelie walker and get in. I still drive on long distance but find it’s not worth the effort of me driving around town as I can’t just take me as I need him to put the walker or wheelchair in and out. Very frustrating. I mostly go downtown 3kms in wheelchair to socialize and have coffee or lunch with friends or to appointments, shopping in big wheelchair which is now my friend. It sat in our lounge room for a year before I succumbed to using it.

I often get told by passers by they need my chair more than I do and of course, “you don’t look sick, why do you need it.” Now I say smartly, “You take my wheelchair and my disease and you can have the lot.” Then of course that brings many questions!

In my grand assortment of aids I have a button puller, bottle opener (starting small to large), long shoehorn, Velcro strapped shoes; somedays I can or can’t do them as somedays I can’t open doors or spray aerosols or turn keys, etc. I have bed pole or stick, wedge pillow, slippy sheet, oh yes and now a hospital bed with remote controls that is excellent except it’s a normal hospital size so a very narrow single bed. When in hospital they gave me a slightly wider one that made turning over more easy so look out for that! Bathroom, I have a long based commode chair which fits over our disabled toilet that is no where high enough for me to use even when it was new; just far too low!  Chair I wheel around to shower and back over toilet when finished. It has wheelchair wheels but has ability to be pushed by carer when time comes. I had a short wheel base and I reached for something and next thing I was on floor with it on top of me, and so another trip by ambulance to the hospital. I now know the Ambulance crews by name. Oh dear! I still use normal cutlery but not sure for how long.

In between all above I have added with varying success two more Neurologist’s, two Gastroenterologist’s, one Rehab specialist and the latest in my lovely helpers is a Pain doctor who I saw last month who after hearing that I have an extremely bad reaction to morphine and even manufactured morphine as well as codeine said maybe a tiny dose may not affect me.  So off I went to try it and wake up nauseous and headachey. At least I know now.  That was in a 5 1/4 mg dose of combine morphine and whatever the other drug was. I am now waiting to see him in a couple of weeks. They are running out of options for me and I am worried very much.

The two wonderful  neurologists were in Sydney and one has moved on to W Australia. They are both specializing in Autoimmune diseases; mainly Myositis. The one still here took over first and she is continuing the work and will start the trials early this year. I think the W A specialist started before Christmas with trial. I have qualified as long as I don’t have a heart attack or stroke or fall and break anything.

Now I was diagnosed in 2003  and even though I had some minor symptoms long before that I have since deteriorated. My hands, left especially, but right following slowly I hope, still driving well according to Don. Bent double unless I make a supreme effort to stand upright holding my walker that’s partly Myositis partly one of my other diseases, Camptokormia! Can do all my exercises at gym modified for each of us in class. Sjogrens, had breast cancer in 1993 with 50% mastectomy. Only had surgery and no chemo or radiation.  Lucky me I have survived well!  Dysphagia requiring many Dilations a year. I had Pharengeal oesophageal Myotomy in 2010, Bells palsy slight touch, Celiac. I have been on gluten free diet for 10 or 12 years starting after a visit to an Immune Biologist who put me on a grain free, dairy free, fruit and veg free diet just eating meat, chicken, veal, pork and fish.  No processed meat and gradually he introduced things until I had a reaction and then that was cut out. I started with just beans, green all through but no potatoes, tomatoes or eggplant being Nightshade vegetables. This all took years but now on a gluten free and mostly dairy free diet. Certainly felt so well on the very strict grain free diet but I just couldn’t sustain that I’m afraid. Gluten free is simple after that and I really keep strictly to it. I really stay well feeling and happy.

Now on Lyrica 275 mg a day, losec, Panadol Osteo 6 x 665 mg, Endep  5 1/4 mg a day, Coversyl 2 1/2 mg then vitamin d two or three capsules, Qoenzyme 10 . 150 mg and Vit c 1,000.  Sorry some of these drugs won’t mean much to anyone not in Australia.

Just hope and pray everyone finds their happy place and can cope with all our diseases that get thrown at us. Sorry I made my story so long. I’ve probably left out hunks but that’s okay because you will no doubt hear more from me through the years. God Bless you and I love you all!  xx

To learn more about Inclusion Body Myositis (IBM), check out the MDA site.

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Hi, this may be interesting to you: Ups and Downs with IBM! The link is included below: https://understandingmyositis.org/inclusion-body-myositis-ups-downs/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.