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Myositis - finally
Hi all, finally this is what I have – Myositis - inflammation of the muscles. I saw the neurologist last week Thursday (after 4 visits in the space of 5 months) and Friday he phoned me to tell me that this is what his diagnoses is – Myositis. This explains the muscle weakness, fatigue and swallowing difficulties and breathing difficulties (not that I am unfit or that my arteries are clogged as was thought earlier this year). I am undergoing cortisone treatment together with anti-inflammatories. I am so very relieved that I can now put a name to the leg pain. The symptoms can take months to years to manifest, usually from the age of 30yrs and is more common in woman than men. The neurologist thinks that the so called ‘glandular fever’ I had at the age of 32 was actually a flare-up of myositis, but misdiagnosed (once again). Usually the inflammation destroys the muscle fibres over time, but anti-inflammatories and cotrizone medication slows down this process. Now I am even more thankful for all the aspirin I have taken and still take, aspirin is the only thing that relieves the gnawing leg pain.
I have been in the wings of this forum, but so busy trying to get a diagnosis, therefore my lengthy absence of no written contact. I continue to hope and pray for those here that remain in search of what ails you and that the answers be found soon, so that you too can move on with your lives.
Take care
IDA
I have been in the wings of this forum, but so busy trying to get a diagnosis, therefore my lengthy absence of no written contact. I continue to hope and pray for those here that remain in search of what ails you and that the answers be found soon, so that you too can move on with your lives.
Take care
IDA
You're right, technology is a wonderful thing when it works so well to weave our separate lives together.
Just a note on God - don't feel bad about forgetting to thank him - he is one being that won't let you down in a moment of forgetfulness. My faith has always been strong, since he helped me find my path at the age of 16yrs. He is amazing when illness strikes and proves over and over to me that he is always forever by your side. Last year in October when I was so ill, I sat on my bed and that morning I asked God to take my life as the pain had consumed my entire being and I was sure I was going to die. I even bid farewell to my children. Obviously he had other plans from me for that is when my cellphone rang and it was the Gastro specialist asking me if I was alright - I started shouting at him saying that no I don't think I am going to make it through the day, that's when he said he has all my blood results in front of him and they don't look good - he is sending an ambulance over right away - the next 6 days I slept wonderfully in hospital and my body healed from all stomach pains whatsoever. This voice, I believe, must have been God himself. By the way, I have never been to church in my life.
Just one of my little miracles.
Take care
IDA
Just a note on God - don't feel bad about forgetting to thank him - he is one being that won't let you down in a moment of forgetfulness. My faith has always been strong, since he helped me find my path at the age of 16yrs. He is amazing when illness strikes and proves over and over to me that he is always forever by your side. Last year in October when I was so ill, I sat on my bed and that morning I asked God to take my life as the pain had consumed my entire being and I was sure I was going to die. I even bid farewell to my children. Obviously he had other plans from me for that is when my cellphone rang and it was the Gastro specialist asking me if I was alright - I started shouting at him saying that no I don't think I am going to make it through the day, that's when he said he has all my blood results in front of him and they don't look good - he is sending an ambulance over right away - the next 6 days I slept wonderfully in hospital and my body healed from all stomach pains whatsoever. This voice, I believe, must have been God himself. By the way, I have never been to church in my life.
Just one of my little miracles.
Take care
IDA
I'm so glad your faith is such a stronghold for you. God helps me get through every day and I frequently forget to credit Him. Thanks for reminding me that He's the Man!
Please don't be a stranger. Johannesburg is not far away when we have our trusty keyboards, is it?
Take care!
Zilla*
Please don't be a stranger. Johannesburg is not far away when we have our trusty keyboards, is it?
Take care!
Zilla*
Wow, although today, I am feeling rather weathered - as mentioned before visiting this forum always puts the Sunshine in my Step.
Thanks Momz always for your never-ending encouragement.
Craig, I live in Johannesburg, South Africa - so I am unable to get to the myositis clinic you suggest, but I will work with this Neurologist, together with God and hope that soon I will be relieved of my pain. Thank you for your thoughts.
Quix, our 'old faithful' - you gave me the strength to continue my search for a diagnosis. If in time - I feel the symptoms are worsening, I will pursue a muscle biopsy, but today and for now, I am thankful for the reason why at times I find it so tiring just to breathe, never mind eat. I was telling my colleagues at work about the 'being too tired to swallow'. You can well imagine how many lady's wanted what I have - just so they too don't have to eat. Unfortunately the meds do increase one's appetite, so I don't benefit that well from this symptom.
Thank you all - you are exceptional people!
IDA
Thanks Momz always for your never-ending encouragement.
Craig, I live in Johannesburg, South Africa - so I am unable to get to the myositis clinic you suggest, but I will work with this Neurologist, together with God and hope that soon I will be relieved of my pain. Thank you for your thoughts.
Quix, our 'old faithful' - you gave me the strength to continue my search for a diagnosis. If in time - I feel the symptoms are worsening, I will pursue a muscle biopsy, but today and for now, I am thankful for the reason why at times I find it so tiring just to breathe, never mind eat. I was telling my colleagues at work about the 'being too tired to swallow'. You can well imagine how many lady's wanted what I have - just so they too don't have to eat. Unfortunately the meds do increase one's appetite, so I don't benefit that well from this symptom.
Thank you all - you are exceptional people!
IDA
Hi, there. What a relief it must be to have a diagnosis! I am pleased for you. I don't know alot about the different types of myositis and its usual course. I also always thought that the "proof" of the dagnosis was in a muscle biospy. This is something you might want to look into.
I hope you still drop in sometimes. I have a running list of all the people who have been here looking like MS, but have received alternate diagnoses. Myositis, an autoimmune, disease is one of those so you really do have a rightful place here. Besides you were one of the first people I talked to when I began answering on the Neurology forum last spring!
I hope they relieve your pain and fatigue soon! (((HUGS))) Quix
I hope you still drop in sometimes. I have a running list of all the people who have been here looking like MS, but have received alternate diagnoses. Myositis, an autoimmune, disease is one of those so you really do have a rightful place here. Besides you were one of the first people I talked to when I began answering on the Neurology forum last spring!
I hope they relieve your pain and fatigue soon! (((HUGS))) Quix
There is a great myositis clinic at Johns Hopkins Hospital in Baltimore Maryland. They just opened last Spring and they have many different types of doctors in the clinic to get the person cured. Just in case you want another opinion on treatment...
Craig
Craig
Hi, Ida! It's so good to hear from you! And finally with a diagnosis! Hooray!
I am glad you have an answer that makes sense to you. Good luck with the treatment, and please keep us posted as to how it's going.
Feel well,
Momzilla*
I am glad you have an answer that makes sense to you. Good luck with the treatment, and please keep us posted as to how it's going.
Feel well,
Momzilla*
Thanks to you both for your good wishes.
Hi Heather, no muscle biopsy was carried out - although this was on his 'to do list' in June this year, along with a bone marrow (but bloods for the bone marrow did not warrant this test). The nerve conductor showed no nerve damage leading to the muscles, yet the EMG showed damage due to muscle fibre inflammation. His diagnoses was based on my symptoms of - swallowing difficulties since the age of 29yrs (I am now 37yrs old). Gall bladder removal at 29yrs, glandular fever at 32yrs, pleurisy and pneumonia at 34yrs, then the onset of the gnawing leg pain at 35yrs, burst appendix at 36yrs followed by pancreatitis through trauma surgery and now just the muscle pain/swallowing difficulties and battling to breathe up 2 flights of stairs and fatigue. Does this ever go away? - I drive while I sleep and am extremely worried about this. Anyway I will go on the course of cortizone treatment (prednisone?) and anti-inflammatories (prexige) and with faith in my heart, as prayer is the only medicine that has got me this far, I will move forward. It is interesting nevertheless that you now have MS. I will definitely keep you posted.
Take care
IDA
Hi Heather, no muscle biopsy was carried out - although this was on his 'to do list' in June this year, along with a bone marrow (but bloods for the bone marrow did not warrant this test). The nerve conductor showed no nerve damage leading to the muscles, yet the EMG showed damage due to muscle fibre inflammation. His diagnoses was based on my symptoms of - swallowing difficulties since the age of 29yrs (I am now 37yrs old). Gall bladder removal at 29yrs, glandular fever at 32yrs, pleurisy and pneumonia at 34yrs, then the onset of the gnawing leg pain at 35yrs, burst appendix at 36yrs followed by pancreatitis through trauma surgery and now just the muscle pain/swallowing difficulties and battling to breathe up 2 flights of stairs and fatigue. Does this ever go away? - I drive while I sleep and am extremely worried about this. Anyway I will go on the course of cortizone treatment (prednisone?) and anti-inflammatories (prexige) and with faith in my heart, as prayer is the only medicine that has got me this far, I will move forward. It is interesting nevertheless that you now have MS. I will definitely keep you posted.
Take care
IDA
Thanks to you both for your good wishes.
Hi Heather, no muscle biopsy was carried out - although this was on his 'to do list' in June this year, along with a bone marrow (but bloods for the bone marrow did not warrant this test). The nerve conductor showed no nerve damage leading to the muscles, yet the EMG showed damage due to muscle fibre inflammation. His diagnoses was based on my symptoms of - swallowing difficulties since the age of 29yrs (I am now 37yrs old). Gall bladder removal at 29yrs, glandular fever at 32yrs, pleurisy and pneumonia at 34yrs, then the onset of the gnawing leg pain at 35yrs, burst appendix at 36yrs followed by pancreatitis through trauma surgery and now just the muscle pain/swallowing difficulties and battling to breathe up 2 flights of stairs and fatigue. Does this ever go away? - I drive while I sleep and am extremely worried about this. Anyway I will go on the course of cortizone treatment (prednisone?) and anti-inflammatories (prexige) and with faith in my heart, as prayer is the only medicine that has got me this far, I will move forward. It is interesting nevertheless that you now have MS. I will definitely keep you posted.
Take care
IDA
Hi Heather, no muscle biopsy was carried out - although this was on his 'to do list' in June this year, along with a bone marrow (but bloods for the bone marrow did not warrant this test). The nerve conductor showed no nerve damage leading to the muscles, yet the EMG showed damage due to muscle fibre inflammation. His diagnoses was based on my symptoms of - swallowing difficulties since the age of 29yrs (I am now 37yrs old). Gall bladder removal at 29yrs, glandular fever at 32yrs, pleurisy and pneumonia at 34yrs, then the onset of the gnawing leg pain at 35yrs, burst appendix at 36yrs followed by pancreatitis through trauma surgery and now just the muscle pain/swallowing difficulties and battling to breathe up 2 flights of stairs and fatigue. Does this ever go away? - I drive while I sleep and am extremely worried about this. Anyway I will go on the course of cortizone treatment (prednisone?) and anti-inflammatories (prexige) and with faith in my heart, as prayer is the only medicine that has got me this far, I will move forward. It is interesting nevertheless that you now have MS. I will definitely keep you posted.
Take care
IDA
Thanks to you both for your good wishes.
Hi Heather, no muscle biopsy was carried out - although this was on his 'to do list' in June this year, along with a bone marrow (but bloods for the bone marrow did not warrant this test). The nerve conductor showed no nerve damage leading to the muscles, yet the EMG showed damage due to muscle fibre inflammation. His diagnoses was based on my symptoms of - swallowing difficulties since the age of 29yrs (I am now 37yrs old). Gall bladder removal at 29yrs, glandular fever at 32yrs, pleurisy and pneumonia at 34yrs, then the onset of the gnawing leg pain at 35yrs, burst appendix at 36yrs followed by pancreatitis through trauma surgery and now just the muscle pain/swallowing difficulties and battling to breathe up 2 flights of stairs and fatigue. Does this ever go away? - I drive while I sleep and am extremely worried about this. Anyway I will go on the course of cortizone treatment (prednisone?) and anti-inflammatories (prexige) and with faith in my heart, as prayer is the only medicine that has got me this far, I will move forward. It is interesting nevertheless that you now have MS. I will definitely keep you posted.
Take care
IDA
Hi Heather, no muscle biopsy was carried out - although this was on his 'to do list' in June this year, along with a bone marrow (but bloods for the bone marrow did not warrant this test). The nerve conductor showed no nerve damage leading to the muscles, yet the EMG showed damage due to muscle fibre inflammation. His diagnoses was based on my symptoms of - swallowing difficulties since the age of 29yrs (I am now 37yrs old). Gall bladder removal at 29yrs, glandular fever at 32yrs, pleurisy and pneumonia at 34yrs, then the onset of the gnawing leg pain at 35yrs, burst appendix at 36yrs followed by pancreatitis through trauma surgery and now just the muscle pain/swallowing difficulties and battling to breathe up 2 flights of stairs and fatigue. Does this ever go away? - I drive while I sleep and am extremely worried about this. Anyway I will go on the course of cortizone treatment (prednisone?) and anti-inflammatories (prexige) and with faith in my heart, as prayer is the only medicine that has got me this far, I will move forward. It is interesting nevertheless that you now have MS. I will definitely keep you posted.
Take care
IDA
Thanks to you both for your good wishes.
Hi Heather, no muscle biopsy was carried out - although this was on his 'to do list' in June this year, along with a bone marrow (but bloods for the bone marrow did not warrant this test). The nerve conductor showed no nerve damage leading to the muscles, yet the EMG showed damage due to muscle fibre inflammation. His diagnoses was based on my symptoms of - swallowing difficulties since the age of 29yrs (I am now 37yrs old). Gall bladder removal at 29yrs, glandular fever at 32yrs, pleurisy and pneumonia at 34yrs, then the onset of the gnawing leg pain at 35yrs, burst appendix at 36yrs followed by pancreatitis through trauma surgery and now just the muscle pain/swallowing difficulties and battling to breathe up 2 flights of stairs and fatigue. Does this ever go away? - I drive while I sleep and am extremely worried about this. Anyway I will go on the course of cortizone treatment (prednisone?) and anti-inflammatories (prexige) and with faith in my heart, as prayer is the only medicine that has got me this far, I will move forward. It is interesting nevertheless that you now have MS. I will definitely keep you posted.
Take care
IDA
Hi Heather, no muscle biopsy was carried out - although this was on his 'to do list' in June this year, along with a bone marrow (but bloods for the bone marrow did not warrant this test). The nerve conductor showed no nerve damage leading to the muscles, yet the EMG showed damage due to muscle fibre inflammation. His diagnoses was based on my symptoms of - swallowing difficulties since the age of 29yrs (I am now 37yrs old). Gall bladder removal at 29yrs, glandular fever at 32yrs, pleurisy and pneumonia at 34yrs, then the onset of the gnawing leg pain at 35yrs, burst appendix at 36yrs followed by pancreatitis through trauma surgery and now just the muscle pain/swallowing difficulties and battling to breathe up 2 flights of stairs and fatigue. Does this ever go away? - I drive while I sleep and am extremely worried about this. Anyway I will go on the course of cortizone treatment (prednisone?) and anti-inflammatories (prexige) and with faith in my heart, as prayer is the only medicine that has got me this far, I will move forward. It is interesting nevertheless that you now have MS. I will definitely keep you posted.
Take care
IDA
I am so glad to hear that you finally have a diagnosis. Not happy that you have anything at all, of course, but at least you can now be treated.
May I ask a question? Did you have a muscle biopsy? I was told when I was in my early thirties (I am now 54) that I had Myositis. You may know that I have since then, received a diagnosis of Multiple Sclerosis. Several other doctors dismissed the diagnosis of Myositis. This is NOT to imply that you have the wrong diagnosis..please don't take what I am saying any other way.
I am just interested in whether they did a muscle biopsy. I hope you feel better and the steriods do the trick. I hope that you will come back to thsi forum and keep us posted. Please?
Heather
May I ask a question? Did you have a muscle biopsy? I was told when I was in my early thirties (I am now 54) that I had Myositis. You may know that I have since then, received a diagnosis of Multiple Sclerosis. Several other doctors dismissed the diagnosis of Myositis. This is NOT to imply that you have the wrong diagnosis..please don't take what I am saying any other way.
I am just interested in whether they did a muscle biopsy. I hope you feel better and the steriods do the trick. I hope that you will come back to thsi forum and keep us posted. Please?
Heather
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