[bracknagh]

Confused by multiple / uncertain diagnoses

by bracknagh on Mon Feb 29, 2016 9:08 pm

Hi

Am from UK and am confused by a long journey and several diagnoses to account for lower back pain (on my left side), stiffness in lower joints, severe bouts of pins and needles, and reduced mobility due to trailing of my left foot.

My problems first arose about 18 months ago just after a bout of severe back pain which I thought (aged 55) was caused by mechanical wear of spinal discs.

My back pain had subsided to a throbbing, almost continuous, pain on my left side that was not relieved by anti-inflammatories. My partner also noticed how I was trailing my left foot whilst walking and insisted "enough anti-inflammatory drugs" and time to resolve the issue.

So off to experience the NHS and try to resolve what was causing my issues. In brief, their diagnostic regimen is thus summarised:

1. At first attended my GP (primary physician), referred to senior phsyio who ordered first of many MRIs and ruled out any mechanical causes. However, they made first mention of some spinal lesions and clump of unknown blood vessels close to my spinal cord;
    
2. Referred to neurosurgeon and more MRIs of spine and brain with diagnosis of considerable demyelination of spinal cord with lesions apparent there and in brain scan which led to suggestion I may have multiple sclerosis? (shock, horror). Prescribed duloxetine (Cymbalta) for back pain and co-codamol (codeine + Tylenol / acetaminophen / paracetamol) if and when pain was still unmanageable. The latter tablets caused me severe constipation;
    
3. Called for another spinal MRI and GP reported the radiologist report again referred to haemocytoma mass (in form of clump of blood vessels) near lower spinal cord and a syrinx (a fluid filled cavity close to spine). The drug duloxetine was not much help with pain so GP switched me to baclofen (muscle relaxant ) that has afforded me some pain relief but often still revert to co-codamol when pain is severe;
    
4. Have also had yet another blood screen (4th in 6 months) and a Bence Jones test of my urine and currently awaiting results. My research has suggested to me they may now be looking at multiple myeloma.

Just would like to hear if any multiple myeloma sufferers have experienced a similar prolonged diagnoses and can add any helpful advice on the road I am now travelling.

[Gala]

Re: Confused by multiple / uncertain diagnoses

by Gala on Tue Mar 01, 2016 11:42 pm

Hello and welcome. I am also new here and find this forum excellent. There is support, care, knowledge, and experience that people here so generously share with each other.

I used to live in the UK and with all my love and appreciation of NHS I did find it extremely frustrating that you could not see a consultant specialist of your choice without having a GP referral. Maybe you need to specifically ask to be referred to a haematologist / oncologist in order to rule out or confirm multiple myeloma. It certainly sounds like a possible diagnosis, especially considering haemacytomas have been identified.

My sister (though not in the UK) spent about two years (at least) trying to get answers about her numerous health issues, one of which was extreme bone pain. She was treated for many things before the lump in her breast turned out to be a plasmacytoma, which then led to a multiple myeloma diagnosis.

The good news is that it is treatable, though the treatment is hard.

I hope you find answers soon.

[GSelwood]

Re: Confused by multiple / uncertain diagnoses

by GSelwood on Wed Mar 02, 2016 10:33 am

I too had problems with my spinal cord as the initial symptoms of multiple myeloma, and it was discovered that I had what they thought at the time was a tumor on T8. It was radiated, but damage had been done - 5 fractured vertebrae and loss of sensation below the waist. There were other symptoms that led them to the final diagnosis, however – extreme anemia, ribs that broke themselves due to lesions. Only because they misdiagnosed the lesion on my spine as a tumor did they refer me to an oncologist to begin with.