Where do I go from here?

[meggiemog]

Hi - I am new on this site.

I will try to make this quite short as my story is long! I have just recently had an MRI on my spine which has shown broad based non-compressive disc bulges at both C6/7 and L4/5, as well as a bony island at sacral alar. As this is classed as 'age related' I will be discharged. I have had no bloods taken. I am 52 - but went through the menopause at 28. My bones ache .I can't sit / lie/ walk for any length of time without consequence (usually end up with burning sensations and intense gnawing pain) I also had x-rays taken of my hands, which have not been mentioned at all. As it seems I have been relatively 'written off' where do I go from here?

[Fruitandnutcase]

Has no one mentioned osteoporosis? Your early menopause is one of the indicators of that. It’s surprising you haven’t been offered a DEXA scan and any necessary follow up treatment - perhaps you will be offered one though. If not then you need to ask to have one done.

If that shows osteoporosis then you need to be tested for other things like vitamin D and calcium levels, hyperparathyroidism, coeliac disease etc. Look at the ROS website for further information.

The burning sensation / gnawing pain could be the discs pressing on a nerve. Plus so many nerves pass through the sacrum that can cause all sorts of unpleasant symptoms.

I definitely wouldn’t let anyone say your pain is age related and sign you off.

I’ve just battled with my (now former GP and physio) when I kept telling them I felt as if my sacrum was split in half. Turned out after being referred by my new physio for three private MRI scans I was right, my right sacral ala is fractured - I have a sacral insufficiency fracture. I also get the type of pains you describe down through my buttocks, I don’t actually have backache as such but a lot of the sort of horrible pain you are feeling. .

So don’t let anyone fob you off by saying it’s your age - at 52 you are still a young thing 😉. You shouldn’t be left in pain. Good luck.

[meggiemog in reply to Fruitandnutcase]

Thank you. I will get some private blood tests done soon - I have had low vitamin D in the past. I was hoping that my bones would be checked - I am on HRT and have been since 29/30 years old . I take that bone spurs come about from areas of inflammation - I have a few of them! I'm not even sure if I was sent to the right department - they sent me to rheumatology.

[Artistic-Grandma in reply to meggiemog]

I'm pretty sure you were sent to the right department, just keep asking questions, good doctors are only too pleased to help.

[meggiemog in reply to Artistic-Grandma]

As it is at this time - if you are lucky you see someone once and if the tests they do don't show what they think they should be looking for or it's not obvious then you are discharged. I have had 1 consultation, an x-ray, an MRI and an ultrasound as they found a cyst on the MRI. If they deem the cyst benign I will be discharged. I am waiting to see what transpires.

[Kaarina]

You should most certainly ask for a DEXA scan and get a copy of the report. I too cannot understand why this has not been offered to you before. Ask for the report of the xrays on your hands. Hopefully the result was good but you still need to know and also ask for a copy of the report.

You are young! Do not be fobbed off. Fight back. Please keep in touch and let us know how you get on and we will do our best to help you.

[meggiemog in reply to Kaarina]

Thank you. I do have access to private healthcare through my work. It does cost me an excess fee - and I have used it before. I think it might be time to do this again.

[Kaarina in reply to meggiemog]

I am going for a REMS scan at the end of this month. That is private and costs £150. It is not available on the NHS. I had a dexa scan fairly recently and as I have scoliosis the report excludes details of my spine as due to the deformity I am told it will not give a reliable result. I really would like to know what is going on with my spine as this is what I am worried about. You do not have to go through your doctor to get this REMS scan. They will send a report to my doctor unless I say not to but if it is a "matter of life and death" they would send the GP a copy anyway. I am very happy for my GP to have a copy of this scan.

healthunlocked.com/boneheal...

[Lilyrosemarie in reply to Kaarina]

Hi Kaarina, sorry to butt in on somebody else's post but really interested in what you have written as I have scoliosis but nobody mentioned that. I had a DEXA scan and have been told I have osteoporosis. Am going to google REMS scan now. Thankyou

[Kaarina in reply to Lilyrosemarie]

There is an email address on the link and I sent them a message mentioning that I have scoliosis and would I be able to learn more about my spine from this ultrasound.

I received this reply. "I’ve spoken to Nick and as long as your scoliosis is not too severe REMS can provide a spinal score. It might take a few attempts to get the results for three or four vertebrae because he will need to understand how the spine curves, but usually we get a good diagnostic result."

The appointment takes half an hour and in that time you receive the results and can discuss and ask any questions. I am looking forward to this little adventure!

[Artistic-Grandma in reply to meggiemog]

To be fair, you should get the tests on the NHS just politely ask your GP.

[meggiemog in reply to Artistic-Grandma]

I would think it depends on funding. Their tests are kept to a minimum- especially now!

[Met00]

If the MRI scan didn't show up any fractures, then it's probable that your pain is caused by the disc bulges and other issues it reports. I would go back to your GP and ask for referrals to the pain clinic and to physiotherapy.

[meggiemog in reply to Met00]

Thanks! I will be back in touch with them. Not too keen on physio as I can't move my left shoulder properly after a few sessions with them a couple of years ago. I went in with a frozen neck, and came out with a very painful swollen shoulder. I still can't lift it properly and my lovely hubby has to help me remove tight tops at the end of the day. To be honest between moving my neck and having full extension on my shoulder - I prefer being able to move my neck, so I guess there's always a trade off.

[Met00 in reply to meggiemog]

Oh dear, not a good experience. I have to say I've found physio largely unhelpful over the years. but when I had a slipped disc, they showed me how to lift correctly and which movements to avoid, to protect it from further damage.

[meggiemog in reply to Met00]

Bless her she did try , as did I. One thing I did take from it was to keep moving, It can be hellish sometimes and I am often up watching TV at stupid o'clock with a hot water bottle on my back to ease the pain.

[Fruitandnutcase in reply to meggiemog]

You’re right about keeping moving, my back etc pretty much fell to pieces when my Pilates teacher (she is a qualified physiotherapist with a strong interest in osteoporosis) took a month off to look after her elderly parents and although I kept walking, I stopped doing my Pilates stretching exercises. I do three hour long sessions a week, but the physio who organised my MRIs said to do Pilates every day, that it’s important to keep moving.

I hope you get somewhere with your private health and I was glad to read that you are still on HRT, I’m no expert but surely that has to be a good thing for your bones.

[Kaarina in reply to meggiemog]

There is a degree of risk when seeing a physio unless they really do know what they are doing. This is, unfortunately, something we do not find out until after the first or couple of appointments.

Keep moving, is a good motto, as is, use it or lose it.

[Fruitandnutcase in reply to Kaarina]

You’re right. I chose my first physio because she seemed to deal with hands and arms so she was very good dealing with my shoulder and I had originally booked for her to try and free up my hand but my back was so bad by that time that I decided to ask her to do something with that instead. Somehow or another I just didn’t have confidence in her even though she had been good before, I didn’t feel that she had listened to what I said so I cancelled and went to the amazing guy I see now. He does a lot of rehab for spinal problems. So it was a good decision.😊

[meggiemog]

I have been on HRT a long time - maybe not ideal - and it did help grow an exceptionally large fibroid, which lead to a full hysterectomy a couple of years ago! My Mum broke her ankle in her early 50's - which lead to an op to fix it (she used to joke she had the Eiffel tower in there) she had menopause in her 40's and after this accident found she had osteoporosis. She also developed breast cancer in her mid 50's - so I am very mindful of that. I was told due to a very early menopause I had a much greater risk of osteoporosis as well as heart disease, so I am wary of any changes in my body, as well as increased risk of breast cancer.

[veriterc]

This is appalling to write you off at 52 for age - you are a spring chicken! Sack those who give such advice and look for better care! You might find hydrotherapy will be helpful in coping/relieving pain, but if you live in UK you might find it difficult to obtain; if you live elsewhere this is well-known, Suggest you go to aftercancers.com and look up Osteoporosis,. Good luck.

[Artistic-Grandma in reply to veriterc]

I agree, hydrotherapy is a good idea. There are plenty available in the UK just ask your local authority.

[veriterc in reply to Artistic-Grandma]

Just one thing with local authority pools; I've never yet met one that is warm enough. To save ratepayers' money, most are kept at 27-30 degrees, which is too cold - but it would be wonderful if anyone can pass on details of any that are available at correct temperature.

[meggiemog in reply to veriterc]

I hate cold swimming baths! I could be cold in a sauna! 😁

[meggiemog]

I enjoy swimming - but only open air in a nice warm place I don't think there is much around me as far as hydrotherapy goes - but I'll look into it!

[notanotter]

I’ve had physiotherapy that was very good, and helped bring my neck back to full extension. I’ve also experienced meh PT that did very little. The better therapists were those I found by asking for a list of referrals from the orthopedist.

[meggiemog in reply to notanotter]

Yeah I have had good and meh. The last was a definite meh! Unfortunately I am in a relative back water where getting good healthcare is either excellent or pants - and nothing in between!

[Artistic-Grandma]

Age related!, Doctors have only used that expression with me within the last few years and I am almost 80. I should question it and ask for a further explanation. Good luck and keep positive.

[meggiemog in reply to Artistic-Grandma]

In my head I am 18 but my body is starting to resemble a rather knockeryfied banger with knobbly bits, things missing, bits dropping off and running well rough, back firing on a regular basis! 😳 sometimes I just have to make light of it. Especially when I can't even open a bag of crisps without my hubby lending a hand!