Help, have I been misdiagnosed?

[Susan1000]

Hi all, I have suffered for the past four years with extreme fatigue, diarrhoea, blurred vision, lower back and coccyx pain that makes me get up at 5:30 in the morning due to pain and extreme morning stiffness, muscle cramps and spasms in hands and feet, urinary urge incontinence, several faints on standing, extreme facial sweating when at rest and made worse by activity and most recently heart palpitations and breathlessness. A CT scan showed a liver nodule and ovarian cyst which could not be located in a follow up ultra sound scan. A colonoscopy revealed, ' no mischief'. Rheumatologist diagnosed me with fibromyalgia following further tests and an MRI scan of the sacrailiac as psoriatic arthritis was suspected. After a year of being unable to teach due to ill health, my union advised me to accept dismissal on the grounds of ill health in August 2018 due to fibromyalgia. Since then my condition has worsened and I am unable to sit, stand or walk for more than 10 minutes without excruciating lower back pain. The rheumatologist told me that I had no inflammation, however, this made little sense as I was prescribed Arcoxia an anti inflammatory and if I forget to take it I am in absolute agony the following morning. Furthermore, ultrasounds of my shoulders revealed inflammation at the end of tendons, bursitis and a full thickness rotator cuff tear. Then I saw a shoulder surgeon who has put me on the waiting list for surgery stating that I need an operation due to inflammation?!? My condition worsened and I asked the doctor to do blood tests as six months ago blood tests revealed enlarged red blood cells and a folate deficiency. I was prescribed folic acid for 4 months but another doctor then re did blood tests and took me off the folic acid. Last week, the enlarged red blood cells were back, folate and b12 deficiency identified and high MMA. The doctor has now started me on b12 loading doses, given me folic acid to take following the loading doses of b12 and done some further tests. The nurse who injected the first loading dose informed me that I have pernicious anemia and following the loading doses will have a b12 injection every 3 months. I need to see the doctor next week to discuss but after reading other posts on this forum and information from PAS, I am now concerned that I have been misdiagnosed with fibromyalgia and may actually have sub acute spinal cord degeneration. Would the MRI scan I had a year ago revealed this or would they not have looked at my spinal cord. Is it possible for me to ask them to review the MRI scan I had to see if there is evidence of sub acute spinal cord degeneration or would I need another MRI to ascertain this? I have lost a job I loved and my home already as well as my health! Should I be asking my doctor to refer me to a haemotologist or a neurologist and should I be asking to continue the loading injections until no further improvement is seen as I seem to have had the symptoms of neurological involvement for 4 years. I live in Maesteg in South Wales and also wonder if anyone knows a local pernicious anaemia specialist who I could be referred to as a NHS or even as a private patient. Or could I have fibromyalgia and pernicious anaemia? Please help!

[fbirder]

The definitive test for SACD is an MRI, so I would have expected them to have picked it up if it were the cause of your problems.

Have you thought of joining the Pernicious Anaemia Society? They have a thriving support group in South Wales (having a Christmas get-together on Saturday in Bridgend). m.facebook.com/events/46531...

[ABC852031]

Years ago, I suffered badly with ibs and it gave me severe pain in my coccyx. The doctor told me it was because it aggravated muscle anchorages of the digestive system. Have you considered coeliac disease? The official line is to keep eating gluten and get tested for it. I stopped eating gluten six months ago and now have perfect digestion. I doubt I'm actually coeliac but my perspective is that I don't need to know. Don't know if this will help you. It's also important to remember that often there is more than one thing at play. Fixing your B12 levels should help a lot. Hope things turn around for you soon.

[Susan1000 in reply to ABC852031]

Thanks but along the route I have already been tested for coeliac disease and this was negative. I also suspected Hashimoto's but had a few borderline thyroid tests and told the last one was okay. I have had 3 loading doses now and for the first time in 4 years was able to stay in bed until 7am this morning. After the first 2 doses I felt my back was slightly less stiff but thought this might have been in my head, however, sleeping until 7 this morning has convinced me that these loading injections are definitely having impact on my back and shoulder pain as normally I am woken by pain around 4:30 that is so bad I have to get off my bed within an hour. The MRI scan I had was looking for inflammation in the sacroiliac joint to confirm a suspected psoriatic arthritis diagnosis. I don't understand how MRi imaging works, but would they have looked at my spinal cord if they were focussing on the sacroiliac joint. My question I guess is due to lack of understanding of MRIs but is it now possible to review that scan of the sacroiliac joint and refocus on the spinal cord? Fbirder's response suggests that an MRI would pick up SACD regardless of the focus of the MRI investigation, I have no knowledge but is this true?

[ABC852031 in reply to Susan1000]

Glad you are noticing improvement. My point about coeliac, not very well made, was that some people can't digest gluten even if they aren't coeliac. It's more about what works for you, especially since testing is not totally reliable. Dairy too can be a trigger, although I'd be the last person to advocate faddy eating.

Have you tried asking the facility that did your MRI whether they could put it on a disc for you? That way you would be able to get it evaluated.

[fbirder in reply to ABC852031]

Actually, most people who think they have non-coeliac gluten sensitivity are actually sensitive to something called FODMAPs.

newscientist.com/article/21...

[ABC852031 in reply to fbirder]

In my own case I have no clue! I cut out gluten because I had rapidly spreading paraethesia and unexplained weight loss. It was a total surprise that suddenly I had perfect digestion after a lifetime of occasional bouts of ibs and a very marked tendency to constipation. Shame about the paraesthesia!!!!!!

[StillEverHopeful in reply to Susan1000]

Can I suggest you post your thyroid test results on the thyroid U.K. page. They are really helpful especially when doctors say your results are borderline.

[Saya85]

Hi Susan

I can empathise as I have had lower back issues since my late teens and never found a cure. Until.i had my b12 injections recently.

I hope this works for you too.

Regarding your MRI- it is a very detailed scan of bone and joints and tissues and would flag up any other issues if there were any.

If the consultant himself was not reviewing it in full detail and only looking at parts of the images then of course there could be missed pathology but I would imagine they would rule out other things whilst reviewing their scans.

You could ask for a review of noted or images to recheck this. It shouldn't need repeating

With regards to possible other causes I can concur that IBs symptoms do aggravate my pain as does poor posture. Your shoulder and upper back problems do seem a result (or cause?) Of your lower back. It can be a domino effect and the whole back and spine can be out of sync.

My sister was doubled over and housebound for a year with sciatica, another relative with an injury to SAC etc and both improved massively with a couple of treatments, namely :

- taping (holds the joint together)

- visiting a skilled osteopath! The small adjustments and massages made a huge difference in just couple of sessions. Things that physio couldn't reach for some reason.

- vit D and MAGNESIUM

- vit B12

- anti-inflammatory diet

Magnesium oil rubbed into skin is amazing in mine and others experiences. It will help with nerve and muscular pain and stiffness (esp fibromyalgia symptoms ) and is crucial as vit D in calcium absorption into bones. Taken topically it's relieved my carpal tunnel and back and leg pain.

My sister was able to stand up straight and touch her toes after one tx of oils! ( I absolutely love the better you brand of magensium- it really does the trick)

Magensium- is also great for digestion and will help with relaxing the prostaglandins that are responsible for abdominal cramps (which also cause PMs symptoms and menstrual cramps)

It's also used for blood pressure and insomnia - so hopefully will cure you on all fronts.

It's one of the biggest deficincies around so Def worth supllenenting.

For digestion if you are prone to constipation the magnesium citrate Version will.be best. For diarrhoea magnesium glycinate I believe. There are different forms so please read up to make the best choice for you.

Fibromyalgia like CFS and ME can be a blanket term and often handed out when there is unexplained muscular pain and fatigue. (Doesn't explain any spinal/bone issues)

Not to say you don't have it but there are also many overlapping diagnoses.

All of the above can be easily implemented, minimal risk and cost and may save you from.unecessary surgery or steroid injections.

Both women were due to have further treatment but are now virtually fully cured. I wouldn't believe it unless I had both lived through it and seen it with my.own eyes.

Good luck.to.you

[Lindylanka]

Hi Susan 1000, I hear your concerns! B12 def is hard to diagnose, and I am convinced that not enough people in medicine understand it well enough to see the implications. You are responding to loading doses, that is a positive thing, but you also have these worrying spinal symptoms, which I urge you to have investigated further. The problem with MRI is that a lot of spinal degeneratice issues look very similar and so a rheumatologist might see s rheumatic related condition, and so on, through the spectrum of related specialisms, but B12 is a gastro condition, and they don't usually investigate pinal issues, neither do the haemo's we often get referred to. The neuro's only rarely see us and they haven't got all the answers either, and might easily miss SACD thinking it is something else especially if blood results are ambiguous, as they might well be once a patient has embarked on B12 replacement therapy. You say you have inflammation markers, and other stuff too, so I would ask for a really good evaluation of what is wrong, as you are in a lot of discomfort. Degenerative spinal issues can occasionally lead to infection and abscess, These should be ruled out, they can be what is sommetimes called 'occult' i.e. hard to find or obscure. A word of advice, until you have had proper advice from your neuro and preferably a neuro physio, do not do too much exercise outside of your normal range of movement; if there is something actively causing the inflammation you could aggravate the damage. But equally do keep moving to prevent yourself from seizing up. I speak from bitter experience here, I did have an abscess that was not caught on a low level scan, it really requires the deep scan to find what is happening. I did not have SACD, even though I had B12 def. And even today My GP mistakenly calls my condition causa equina, which is something else completely. Sometimes they seem to use these terms interchangeably, even when they are actually distinctly different, with different causes. It is one of the problems of modern medicine, that all conditions get ascribed to a single cause, I think this is in part due to the decline in clinical observation abd the increase in use of mass data in diagnosis. You get fitted to the diagnosis, instead of the diagnosis getting fitted to you. Best wishes for a good outcome, you know how you feel and how it affects you.