View Full Version : Update on my muscle disease

Linda From Australia
11-24-2011, 02:51 AM
I have been through the most difficult 4 months of my entire life. For the past 9 months my muscles have been getting weaker, wasting away, along with unintentional weight loss (among a lot of other things). My Rheumatologist sent a letter to my GP asking her to refer me to a general physician to find out why because my Lupus was stable and these new symptoms didn't seem to be Lupus related.

A long story make very brief (and deleting my original post because it was too long and boring) My specialist wrote the first two diagnosis on a piece of paper and told me to Google them. He didn't tell me anything about the diseases: Dermatomyositis and scleroderma - turned out to be a misdiagnosis.

Then the nightmare began. I became sicker, which landed me in hospital for 3 weeks on August 9. I was malnourished, and the beginnings of the many tests began. My specialist told me that I have some sort of neuromuscular disease and that there was no cure, treatment, only support. He looked sad and said there is nothing that can be done but support the patient and no one ever wants to be diagnosed with those diseases. (I had no idea whey he looked so sad)

Next when I got out of hospital I asked him what they thought I had, he wrote motor neuron disease on a piece of paper and told me to Google it. Ok I said and went home to google it. OH MY GOSH, I am going to become paralysed until I cannot breathe on my own and die in 2-5 years time.

Then a a series of letters were sent to my GP after many requests for information. My specialist mentioned that the tests were coming up negative and if the muscle biopsy comes up negative he is going to diagnose me as a psychosomatic problem.

Muscle biopsy results came back with many abnormalities in my muscles, indicating inclusion body myositis or mitochondrial myopathy. Both very rare diseases. He wrote them on a piece of paper and told me to Google them. OH MY GOSH, I am going to be paralysed in a couple of years, but at least I won't die in 2 - 5 years.

What a way to find out what was wrong with me, being advised to Google it, instead of sitting down with me and telling me the bad news and offering my support.

This specialist is so unprofessional, but wait ... there is more.... I never wanted to go on sick leave, but my school forced me to. My school told me that they provide sickness insurance so I don't have to worry about running out if my annual sick leave and then I can the time required to recover. My Principal gave me some forms to take to the doctor to sign. He initially signed the papers then told me I have to go back to work full time. My GP and physiotherapist told me no way, and my school were not happy about me going back full time. They agreed to let me go back 2 days a week. When my Specialist found out he was furious. He wrote a letter telling my GP he refuses to sign any more insurance papers and that "Linda has reached the end of the line where it comes to sick leave". He also wrote that these diseases have no cure or treatment.

Latest appointment last Friday. Told me I didn't need crutches, even though the physio, neurologist, GP also said I have weak hip muscles and arthritis, and leg muscle fatigue and injuries from just walking. He also said I need to go to work full time and I need to demand my employer to let me work full time. And I need to exercise more, even though I tried to and ended up in agony because I injured myself so badly. I told him my GP, rheumatologist and Physio told me if the exercises hurt then I need to cut down. So his response was ... everyone is wrapping me up in cotton wool, (Australian saying meaning I am not really that sick and I am getting everyone to fuss over me)

So today’s GP appointment.. she told me enough is enough, don't go back to him.

How dare a doctor allude to the fact that I will become paralysed and not be able to breathe on my own until I die in 2 - 5 years and then tell me that I am trying to get out of work, and I am getting people to wrap me up in cotton wool.

The muscle biopsy shows evidence that my muscles are dying, there are abnormalities, and there are things wrong with my muscles. And he also said that the only thing that can be done to help me is support - then telling me that I don't need to use crutches because 'everyone has arthritis'.

How dare he instruct on of the interns while I was in hospital to convince me I was depressed. My autistic daughter's psychiatrist was furious and wrote a letter to my GP saying that there is no way I am depressed, I have never exaggerated anything, I never whine about things etc....

OK my rant and disgust with the way I am treated is over ... the reason why I haven’t been posting is because this doctor has made me feel as though I am making up things and I didn't want people asking me how I was because if I told you I felt as though I was lying to you all, because i was apparently not sick. Even though there is proof that my muscles are sick. I can't work it out, nor can my GP or physio.

The nightmare is over, now I need to go through it all over again when my GP finds another doctor to treat me with respect. I am going to eventually become paralysed, I think I deserve to be wrapped up in a little bit of cotton wool, he did after all tell me I need support. This doctor is an .................................................. ....

11-24-2011, 03:09 AM
i am sorry linda for the way you have been treated i find it disgusting my friend and have been to similiar doctors they are so arrogant and unfeeling and never for a minute think that we would believe you are making anything up these doctors are idiots if they cannot find the answers they want they always start hinting we are nuts you have every right to be furious i wish i lived closer so i could be there for you my friend but i am sending you my luv and hugs.

Angel Oliver
11-24-2011, 04:02 PM
OMG LInda.What a terrifying few months you have had .Nothing surprises me where doctors are concerned,but im sad you have to find another GP and go through all that **** all over again.Lets hope you get the rare good one and he helps more than the others.I think i would sue if any doctor did that to me....making you google it....how dare he.
Linda....always know you are loved dearly here.Until you know for sure, try remember we are here and always thought of daily. Many are going through similar, with doctors,so we understand. Hope one day soon all the answers are given to you and help comes fast.Hope you have many good days....take it one day or hour at a time.
lots of gentle hugs

11-24-2011, 09:52 PM
Oh my sweet darling Linda, what an ignorant ************* ass as in donkey. I wish I could be there to support you. I 'd have gone with you and told him a thing or two. Whether you post or not we are here for you.

Hugs and Lovr

11-24-2011, 10:42 PM
Oh my sweet darling Linda, what an ignorant ************* ass as in donkey.

i think this description is nicely diplomatic.

linda, you know my thoughts, the kettle is always full
scones take, time so please preorder.

love you.......

11-25-2011, 10:18 PM
Welcome home, sweetie. I am so glad to see you here posting again. Don't ever let anyone make you feel that you don't belong here. We've been worried about you.
I've told you before - it seems that we have mirror image muscle diseases. Where your muscles are getting weaker and lighter, mine are getting extremely toned and heavy.
I've been told many of the same things that you have - from the neurologist saying there is nothing wrong at all to the rheumy telling me that I would be fine if I just exercise, to the PCP telling me that I'm a hypochondriac. Someone recently told me that she doesn't like my rheumy because she has no compassion. That's it, right there. Those docs are supposed to be in the business because they care for people, but too many of them lack compassion.
All we can do is keep trying to find that one doc who is decent, has compassion and is willing to help us. That specialist of yours seems to flip-flop. It seems that your GP has some sense. Perhaps she could pin the specialist down and get the info for you, then explain it for you and your principal.
As for a walk-aid, I find that a rollator really is a lifesaver. Here in the US, they are available at warehouse stores for $100. Medical supply stores charge more. Also, drugstores sell nice folding canes. Use whatever you feel comfortable with, whether the doc likes it or not.
Hang in there, sweetie, and keep fighting.
We're always here when you need to vent, and none of us mind "listening" to a rant. PM me anytime - I'll be here for you.
Gentle Hugs,

11-26-2011, 08:27 AM
Hi Linda,

I'm so glad to see you here. I wish things were going better for you.

I don't understand how these people can treat you this way. You are facing a serious health crisis and they are telling you to just go home and Google it? That is beyond unprofessional. And for them to insinuate that you are just trying to get out of work? The last doctor who said something like that to me nearly got punched in the nose. It's infuriating.

I hope you can find a new (and better) Dr. and get a fresh start at treating this thing. I don't know why finding competent and compassionate healthcare has to be so damn difficult. It's like these people are in it just to collect a paycheck, and they could care less about actually helping people who need their expertise.

Please know that you are always welcome here, and that nobody here would ever doubt your sincerity, or think you are just making things up. We know that you are not that kind of person, so please don't worry. Anytime you need to vent, rant, just talk, or whatever you need, know that there are people here who care, and people who will listen.


11-26-2011, 10:41 AM
Oh Linda I'm so sorry, I really dont have any words other than the specialist you were seeing sounds like a JERK and that I hope you find a better one like yesterday you deserve it. I really hope that you were mis-diagnosed again, I'm so sorry hun. {{{{HUGS}}}}}

11-26-2011, 01:46 PM
Linda, if you lived in the US, I'd say "find a good lawyer" and "report that doctor to the state medical board." It is unbelievable that he wants you to go home and Google something instead of having the balls to tell you himself that you will be paralysed and possibly die in a few years. And then to say that you need to work full time? I am so furious right now, and so incredibly sad for you that you are having to fight this battle with him instead of being pampered and cared for.

Linda From Australia
11-28-2011, 11:59 AM
Thank you everyone for your kind thoughts. It was very difficult for me to write this update because I am not the sort of person to try to gain sympathy. I like to blend into the crowd. My specialist (a bit like Dr House - something like a diagnostic doctor) said that I have some sort of rare neuromuscular disease where there is no cure, treatement all all that can be done for me is to support me through each stag. Yet he gives me no support what so ever, even when he phoned me on Friday to tell me that the test results as still inconclusive, he doesn't know which disease I have, I asked him what do I do now and all he said was "just keep doing what you are doing." He offered no follow up or anything. Well that saved me telling him that I don't want to see him anymore.

My GP is running some more tests but personally I just want all the appointments and tests to stop. When I see her next I am going to tell her I don't want to see any other specialist and just try and get on with my life as best as I can. What is the point anyway, nothing can be done for me. I have been told numerous times that I will just get worse and I have to make adjustments every step of the way. I will continue to live a healthy lifestyle, do my physio and try to have fun, which is a very good distractor.

I am sorry I don't have any good news for anyone, the only good news I can give you is that now I don't have to see that doctor anymore, I can start to work on rebuilding my positive attitude, which at the moment has been severely scared. How dare that doctor destroy me!!!!!!!!!!

11-28-2011, 12:35 PM
I am so sorry about the diagnosis and prognosis Linda. Please enjoy every second now and get the most out of life.

As for your doctor.....I am in absolute shock. What a jerk! I hope that you can forget the things that he has said and listen to the doctors who know you well and hopefully to a good specialist who you will soon meet. You deserve support, explanation and help. Does your hospital/specialist have a social worker associated with them. That's the way it works here...but sometimes the patient doesn't know the social worker exists. If there is one, he/she could help you navigate the work thing, and hopefully help open doors to support in your area as well as assistive devices, etc that you may need down the line and for which there may be allowances, or bursaries (wrong word but I hope you get my meaning.)

Huge giant hugs from across the ocean!

11-28-2011, 07:04 PM



11-28-2011, 07:10 PM
i was talking to cherie about your update.

she reminded me that a doctor is just a doctor.
they do not know everything.
cherie recently saw a specialist about her vision problems.
the doctor was early middle aged, and willing to learn.
but she just had no idea about cheries problem.

as we say here often.
there is nothing wrong with a second opinion.

if they can help make your life less painful...........

you are worth it.

11-28-2011, 10:56 PM
It sounds like your doctor has the "God" complex and, since he can't cure you, it must be in your head. What an idiot! For him to write down a dx and instruct you to "Google" your diagnosis, is nothing short of ludicrous.

It's not in your head, Linda. We know it. Your employer knows it. You know it, and, more importantly, your other doctors know it.

Hang in there, Linda. Help (or at least a diagnosis) is on it's way.