Issues with cervical spine and no diag... - Cervical Myelopathy

Cervical Myelopathy

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Issues with cervical spine and no diagnosis

Twin4Life profile image
7 Replies

Hello,

I am making a post here because I am having problems with my cervical spine and I am unsure what to do.

I am a 26 year old petite female living in the UK who has had no spinal issues with the exception of very mild scoliosis. I have also had issues with a sharp pain in my upper back next to my right shoulder blade. The pain has never lasted more than a day at a time and usually occurs after I have been bending over too much. I have never given it much thought as I always thought it had something to do with my mild scoliosis. And, truthfully it may have nothing to do with my issues now.

In the beginning of February of this year, 2024, I began suffering from pain in the back of my head. It was a sharp burning pain. At first, I thought it might be occipital neuralgia due to the fact I was spending an increased amount of time in bed. (This was because of health issues my autistic sister was having and I felt I needed to be with her to support her.) However, a few weeks later when the pain began to spread down into my neck and shoulders I became more concerned. Then when the back of my head, neck, and shoulders began to go partially numb and my muscles in my shoulders and neck grew tense and stiff, I made an appointment with a GP at my surgery. The doctor I saw was not very concerned. He told me that my muscles were spasming and that this was probably causing inflammation which was pinching a nerve. He prescribed me 500mg of Naproxen to take twice a day. I was hesitant to take it as I have stomach issues. But, in hindsight I should have taken it immediately because a few days later the partial numbness had spread to my feet, my hands, my lower legs, and my arms. I made an urgent appointment with the same GP. He was still not very concerned and told me that I should start taking the Naproxen and he referred me to Physiotherapy and to get an x-ray of my cervical spine.

A day later I had the x-ray done, but it showed nothing other than a loss of the normal curvature of my cervical spine. I already knew this as I can feel and see my neck is not its normal shape. However, things got worse. I woke up a few days later to find I had lost partial sensation in most of my body. I felt hypersensitive to the cold. I could not tell the correct temperature of things. For example, really hot water that would normally cause me to pull my hand away from only felt pleasantly warm. I could not tell if my bladder was full or when I needed to empty my bowels. I could not even feel my internal organs. (I had been suffering from viral strep throat at the same time as this issue, and I could no longer feel the pain of my swollen tonsils. Nor could I tell when I was experiencing nausea, which I experience on a regular basis due to stomach issues.) I also found that I was getting very fatigued after doing very little, had difficulty emptying my bladder and bowels, and was shaky. I was absolutely terrified and went straight to A and E.

I was in A and E for several hours and all they did was an ECG (checked my heartbeat) and some blood tests. These all came back normal. When I finally saw someone they told me that I was not experiencing anything that required emergency attention and that they could not help me. I was sent home with no help.

Two days later I had a phone appointment with a physiotherapist. When he heard my symptoms he said he was concerned that I may have cervical myelopathy and that I should go to A and E immediately. I told him I had already been. And, he said I should try going somewhere else. However, as I could not drive myself (due to lack of sensation everywhere) and my mother did not want to drive me into the ULEZ zone as it would cost us money, I ended up going to the same A and E as before.

This time I was seen without any tests being performed. I was told my symptoms made no sense and that they were contradictory. I was told nerve problems cannot affect the entire body at the same time and that if I was actually having spinal cord issues that were affecting my bladder and bowels I would be incontinent. (I was not incontinent. But, I was having to guess when I needed to empty my bladder.) I was told that my symptoms were most likely being caused by my poor mental health and that I should go out and buy a diary, write down something I really wanted to do, and make it happen. Then when my mental health improved my physical health would do. At this point, I broke down and cried. This did nothing to persuade the doctor to do anything more and I was sent home again.

The next day I recieved a phone call from the physiotherapist who had told me to go to A and E. He told me he had referred me for an urgent appointment with a physiotherapist who specialized in spinal issues. A week later, I received a letter saying my urgent appointment was scheduled for 15/04/24. At this point I had been taking the Naproxen for a week and regained full sensation in most of my body. But, I was still terrified of becoming completely numb again.

Because of this, I paid for a private MRI of my cervical spine. The results of this were:

-Reversal of the normal lordosis in the cervical spine

-Minor posterior disc bar on C2-3 with a central protrusion with no compression

-c4-5 posterior disc bar indenting the thecal sac with no compression

-c5-6 posterior disc bar indenting the thecal sace with an annular tear. No definite nerve root compression identified.

-c6-7 posterior disc bar with a central and left-sided protrusion and annular tear indenting the thecal sac, but no definite nerve root compression identified.

-No focal cord lesion.

Over the next month, I continued to regularly experience loss of sensation in my neck, head, shoulders, and upper back. And, on occasion I would lose partial sensation in my hands, feet, and legs. It never got worse than that, but it scares me when it happens. Sometimes just the right side of my body goes numb, but sometimes it is both sides. I am also experiencing spasms in my mid and lower back. And the muscles in my neck and shoulders are still stuck in a spasm. I can't get them to relax.

Today I had my appointment with the specialist. She said I had no signs of weakness in any of my limbs, but I did have overly sensitive reflexes. She said the results of my MRI were relatively normal (I don't know that I agree with that.) and that as there was no compression of my spine she did not believe my numbness was being caused by spinal issues. She said she couldn't do anything for me except refer me back to normal physiotherapy. And, she was about to send me away with absolutely no help, when I told her I didn't know what to do. She gave me some very basic neck exercises which I had already found on the internet and stopped doing when the full numbness occurred. And, she told me to take ibuprofen if I was in too much pain.

I do not know what to do at this point. I feel very scared and helpless. I find if I don't take ibuprofen for a few days the numbness starts to come back. But, I can't take ibuprofen forever. No one can. And, I especially shouldn't be taking it everyday as I already have stomach issues.

Does have any advice they could give me on what to do next? Does anyone have any ideas as to what could be wrong with me?

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Twin4Life profile image
Twin4Life
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7 Replies
MichaelDah profile image
MichaelDah

Hello Twin4Live,

It is of course depressing not to be taken seriously by the doctors and honestly I am also a little surprised by your family doctor.

I am only a medical layman - but the problems you describe actually only indicate a limited connection with the cervical spine. The MRI has also confirmed this, as it shows no nerve compression and probably no inflammation.

After all, the reflexes have been tested. Lively reflexes do not necessarily have to be a cause for concern now - but you should take a closer look - especially against the background that the matter started with severe headaches.

I would advise you to consult a neurologist and if things get more worse again, to insist on an MRI of the head. If there is paralysis, you should go back to the emergency room with it, the keyword here would not be the spine but the suspicion of a micro stroke.

In addition, I would recommend that you have the vitamin B and magnesium status checked by your family doctor. A mineral deficiency can also trigger such symptoms.

Best regards

Michael

LancashireLad1 profile image
LancashireLad1

Hi , i will try and help you best i can as i have Cervical Myelopathy and it's so hard to get a diagnosis, do you have a issue with your arm like weakness as that is one for to look for also pain in parts of the body can be anywhere also are you going to the toilet to urinate to much like your bladder isn't emptying these are common in people with Cervical Myelopathy also be very careful with inflammatory drugs as they can cause other problems as i found out . Also you know your body so don't like Dr's just dismiss things, personally i would talk to a neurologist about your symptoms. Good luck..

jointpain profile image
jointpain

Scary for you, ask your GP to check your vitamin B12 blood serum. And if possible have an MRI on your brain and spinal column.

Twin4Life profile image
Twin4Life in reply to jointpain

I have had a blood test to check my B12 levels. They were borderline deficient. And, there was a note on my blood test that said something along the lines of "B12 levels are at an acceptable level if the patient is having B12 injections." I am not having B12 injections, so I called the test results phone line at my GP. They told me my results were normal. So I asked about the note. They said they would talk to my GP. I received a call two days later, and was told my B12 levels were normal, but if I felt concerned I could take B12 supplements.

Since then I have been taking one B12 supplement a day, but I don't know if it is enough. I wasn't even told how much to take.

jointpain profile image
jointpain in reply to Twin4Life

My B12 level was deemed normal at 178, but that was after taking no end of supplements there was a note saying similar to yours. The deficient level was 170 the high normal is around 800. I continued to supplement and with sublingual got it up to 400, but now nearly six years on I inject twice a week, which I have done for around five years. For the first year it was every other day. I've got my life back, can eat most things except gluten, which basically paralyzes my gut, and causes joint pain headaches and exhaustion. Gluten in coeliacs is known to destroy the villi in the illium which prevents the digestion of lactose and reabsorbs vitamin B12 for reuse in the stomach. I hope my experience helps you.

SheilaDugan profile image
SheilaDuganAdministrator

Hello, can you tell me if you have been diagnosed with Cervical Myelopathy? Or perhaps you have not gotten that far in your diagnosis?

SheilaDugan profile image
SheilaDuganAdministrator

Sorry, I didn’t see you entire post. Can you ask for a second opinion? On the Myelopathy.Org website you should find more information. We also have a Facebook group called Myelopathy Support Group.

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