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General Health Issues Diet and appetite, sleep and fatigue, pain management, exercise, etc.

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  #1  
Old Thu Nov 21, 2013, 01:10 AM
Chirley Chirley is offline
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Is this possible?

I've been getting increasing back pain and have now developed a distinct lump over the area of the spine that hurts.

I've had 8 sessions of physiotherapy ( the physio would not treat near the lump because he thought it was an unstable fracture), my GP has examined the lump and doesn't know what is causing it and I've had another GP examine the lump as well without a diagnosis.

My GP sent me for an MRI and the report came back stating nothing abnormal was found. Even the spondylolisthesis that this same radiology company diagnosed two and a half years ago isn't mentioned.

I'm devastated because the pain is limiting what mobility I do have. I just wanted something to be found that could be treated. If this pain continues I'm afraid I won't be able to care for myself much longer.

I rang the radiology company and asked if they could have another radiologist look at the MRI. They refused and told me to get another radiology company to give a second opinion. I've phoned around and no other company will look at the scans.

I just don't understand how a highly visible and palpable lump can't be found on MRI.

I know this isn't the right forum for this post but I'm really upset. My GP just wants to put me on Morphine. It feels like when you have other things wrong, they think that one more is no big deal. Whereas I think it's that one more thing wrong that can push me to the edge.
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  #2  
Old Thu Nov 21, 2013, 10:21 AM
Mseth Mseth is offline
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Chirley, I am so sorry that you have to deal with another problem. I hope you get a diagnosis and treatment soon.
In the meanwhile, do you think a hot or cold compress on the area may give you some temporary relief from the pain, or some local applications (we sometimes use a paste of turmeric which is anti-inflammatory, maybe some other substance can also help).
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  #3  
Old Thu Nov 21, 2013, 11:55 AM
sbk007 sbk007 is offline
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I wish things came easier for you Chirely.
You've been fighting for a long time.
It almost looks like a bruise, or cyst.
Either way it shouldn't be there.
You can take the docs offer and use a different radiology facility for a second opinion. It sounds like a good idea.
I hope they can get to the bottom of it soon.
I hope you are feeling better soon.

Last edited by sbk007 : Thu Nov 21, 2013 at 11:56 AM. Reason: .
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  #4  
Old Thu Nov 21, 2013, 05:27 PM
Birgitta-A Birgitta-A is offline
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Painful lump

Hi Chirley,
The normal way to examine a painful lump is to make a fine needle biopsy. Is it an infection that should be treated at once?

Then there are other imaging tecnics than MRI like SPECT and PET.

SPECT: http://www.medicalobserver.com.au/ne...ce-perspective

PET: http://www.medicalnewstoday.com/articles/154877.php

Hope you will get a diagnose and treatment!
Kind regards
Birgitta-A
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  #5  
Old Thu Nov 21, 2013, 06:43 PM
Chirley Chirley is offline
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Thanks for your answers. A very good friend of mine came over to visit last night. I told her about the lump saga. She had a look and was incredulous that I haven't been offered further testing. The lump is reasonably solid and mainly left sided but extends across the midline.

My GP wants me to go back and see him on Monday, maybe he has some other idea to talk about. In the meantime I've been having hot showers with the stream aimed directly on the lump and that helps. I've had this lump for at least a month and pain in the area for about 6 months.

One comment the radiologist made was that I had patchy bone marrow in keeping with a haematological malignancy! I've been having regular copper for a long time now, I thought my bone marrow would have recovered. Still, it's better than the "empty marrow" that I was reported to have in 2011.

Maybe if I just give in and accept what's happening to me instead of fighting it, I'll be better off.
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  #6  
Old Fri Nov 22, 2013, 06:55 AM
Birgitta-A Birgitta-A is offline
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Bone marrow

Hi Chirley,
Perhaps your bone marrow never will be like normal bone marrow when it has been forced to work with copper defiency since you were born. The important thing is that it is producing blood now when you at last are getting treatment that is OK for you.

Hope your GP will refer you to someone who can take a biopsy.

Some persons will never be satisfied if they can't tell themselfs that they have done everything to improve their health - I think many of us in this forum belong to these persons.
Kind regards
Birgitta-A
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  #7  
Old Fri Nov 22, 2013, 07:25 AM
Cheryl C Cheryl C is offline
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I was just thinking about you Chirley, and hoping you were OK since there have only been one or two posts from you lately, and now there you are at the top of the New Posts list!

So sorry that you are having such a frustrating time - and painful too. I can't imagine why someone isn't investigating further. I do hope and pray you find what is causing this lump very soon. You are a very brave lady.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #8  
Old Fri Nov 22, 2013, 09:30 PM
Chirley Chirley is offline
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I've finally worked out why I push to have as much treatment as I can get...it's not being brave, it's being scared. I'm frightened of being dependant. I'm not frightened of pain, or debilitation or even death but the the lack of independence that might bring. I must discuss this with the psychiatrist next time I see him, if he's awake.

In the meantime I've been started on Diclofenac (sp) three times a day for the pain. This is the third day and it hasn't kicked in yet but I have noticed I'm more tired than usual. Fingerprick blood test the other day showed Hb of 91 so that's dropping a little. I don't know if it's the tablet or the Hb making me tired. It really doesn't matter. My old cat is comfortably curled up on my lap and only occasionally giving my iPad an annoyed look.

Just had a visit from the Jehovah's Witnesses. My mother, father, brother, sister in law and myself have all had blood transfusions, so I don't think they have much hope of converting us to their way of thinking. However, I respect their right to try. I like it when people are committed to a belief even if I don't have the same belief.

I might annoy "old Betty" and move her off my lap to make a cup of tea.

Regards

Chirley
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  #9  
Old Sat Nov 23, 2013, 06:33 AM
Birgitta-A Birgitta-A is offline
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MDS

Hi Chirley,
You know I am afraid of pain, always feeling ill from for example nausea and being tired. One of my sisters died in colon cancer and she had very low quality of life due to these symptoms. Then I hope the end will come fast - infections and bleedings are the most common death causes in MDS.
Kind regards
Birgitta-A
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  #10  
Old Sat Nov 23, 2013, 08:16 PM
Chirley Chirley is offline
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I've come to the conclusion we all have different fears but we all have fear in common.

About 7 or 8 years ago, I confronted two large male intruders and stood my ground when they were approaching me with their arms raised ready to punch me. I was stupid but I was so very angry that I felt I could take them on (one of them had kicked my little dog and she had screamed in pain). I even rushed at them in a rage and they ran away. Brave? No, just stupid and angry and protective.

I'd rather take on intruders than confront my fear of losing my independence.
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  #11  
Old Mon Nov 25, 2013, 06:56 AM
Cheryl C Cheryl C is offline
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I'm with you on the horror of loss of independence.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #12  
Old Tue Nov 26, 2013, 07:17 AM
Chirley Chirley is offline
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I've been accepted for weight loss surgery! This surgeon agrees that while I'm not particularly obese that losing weight should help me remain mobile longer and stay independent longer.

I'm booked for a laparoscopic sleeve gastrectomy on the 16th of December.

The surgeon wants me to have a substantial top up of copper first and stop taking NSAIDS. He wants me to replace the Voltaren with Morphine at least until the stomach is completely healed (3 to 6 months).

I can't believe that someone has faith that I can gain some benefit from surgery!
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
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  #13  
Old Tue Nov 26, 2013, 02:29 PM
Birgitta-A Birgitta-A is offline
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Gastrectomy

Hi Chirley,
Very good that one doctor will offer the treatment you need!
Kind regards
Birgitta-A
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  #14  
Old Tue Nov 26, 2013, 11:13 PM
Chirley Chirley is offline
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I think I was lucky to have consulted a surgeon who has a friend with neuro sarcoidosis and he knows first hand how important it is to be able to retain your mobility as long as possible. The Nurse Practitioner also has a mother who has Neuro disease and has been using a wheelchair for many years and knows the difficulties of transferring around from bed to toilet etc.

I'm a little nervous but also excited to have hope that I might see some improvement.
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  #15  
Old Wed Nov 27, 2013, 02:14 PM
curlygirl curlygirl is offline
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Good Luck, Chirley, I'm excited for you!
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  #16  
Old Thu Nov 28, 2013, 05:53 AM
Cheryl C Cheryl C is offline
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You are very brave Chirley! Good on you. Hope your surgery goes well and you recover quickly.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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