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Need advice.

Hi everyone, this is my first post and my first ever forum for anything. I have always plodded along self supporting since my health started to change over 22 years ago.

In brief I will try to explain what happened years ago and then what my current situation is, I will be as brief as possible and then perhaps someone might be able to point me in the right direction…

At the approx age of 38 I started having weak legs whilst walking, my knees became very painful. At first I thought it was a weakness caused by my occupation that was from the age of 16 I was a floor and wall tiler. I had changed my job and was now in financial services so really I had not been heavy lifting for over 12 months or so.

I saw my GP who advised a visit to a consultant and in short I had an MRI on my spine and had fusion. The fusion is not at the base of my spine but slightly up. A few months went by and I started having left hand grip problems - another scan, and a neck fusion. I was told it’s discs again… In another year 6/ 8 months my hand once again started loosing grip so they refused my neck with a cage, this worked… approx 12 months later more leg problems and more fusion above the first area with rods… All this then settled down for many years to date…

If we go back say 10 years from now, I started having joint pains ( I had returned to construction) and thought aching, elbows, ankles, wrists, etc were work related… I was then diagnosed with Rheumatoid arthritis… I have seronegative I think it’s called, only my hands swell, I get joint pain etc. I take Cimzea injections to help stop progression.

So, to the point.

Since approx 8 years ago I developed tingling on my face, shoulders arms, to the point I had to go to be with ice packs on my body to try to keep me cool… I am still to this day getting tingling, most days it drives me mad… It’s not washing power, deodorant, shampoo I have tried everything but I still tingle/ burn/ itch…In the last 2 months I started getting weak legs again, painful back, I thought “ not again” …Went to the GP, referred to spinal pain clinic, had to see an oesteopath as this is the route we have to take in my nhs area. I had my MRI and was told it showed nothing but some stenosis, so the oesteopath decided it was my lower back giving me the weakness. The fatigue I have I am told is due to the pain, in back and abdomen and the arthritis. The rheumatologist has said Its also fibromyalgia…I have not worked now for over a month with no income as I am self employed… I enjoy work and managed before now to work 5 days with my pain but I would rather work than sit around.

I have now had to buy a walking stick as my legs get so weak at the knees/ ankles calf spasms, when I walk my wife worries I am going to fall. I get some not so bad days where I simply shuffle along using my stick most of my time I am a home resting. I am taking Ibuprofen when required, codeine. The GP put me on Gabapentin up to the max 6 tabs a day but it gave me headaches so I stopped it…

My symptoms are confusing, I am stuck with… is it another back issue, constant leg pain with tingling, back pain, face and other body parts itching/ tingling, constant fatigue which I have had for a long time. If I walk around the supermarket I am worn out once I get home.These new symptoms have taken over my life from the Rheumatoid. Could this be MS? Both are autoimmune disease. Should I see a neurologist or a spinal consultant, we are happy to pay for a consultation but can not afford private health.

The osteopath thinks one more manipulation will work, after the first it did nothing, symptoms are the same, I have no confidence in osteopath… I am now stuck in a circle of confusion not knowing the next step, next manipulation is end of January

I am sat at home struggling, no income…Luckily my wife works so we are not yet in any financial problems.

Please excuse my typing,I would appreciate any thoughts on my matter… What ever this is it certainly has taken over my life dramatically…regards…

hi scrumpy ask your gp to refer you to a neurologist because you have got nowhere with the people you have seen. get advice re your finances. to be honest construction work is not good for someone with your back issues. consider a change of job before it’s too late. my husband has always worked in construction but he has a lost disc which has left his spine in bad shape. he cannot stand to not be working so i helped him to look at what else was available. he now works in drylining and ceiling fixing. this job involves a lot of stretching which helps his back. just telling you that because it illustrates what i said about considering a change of job. good luck carole x

Hi, I’m afraid nobody here is going to tell you that you have MS and it would be dangerous and irresponsible if anyone did. However I don’t see that any amount of manipulation will do anything for the conditions you’ve mentioned. You have been diagnosed with a disc problem, rheumatoid arthritis and fibromyalgia. For what it’s worth, if you don’t think that these diagnoses by your doctors is enough to be going on with, by all means you, can ask to see a neurologist privately. They can always discharge you back to the NHS afterwards. Best wishes, Anthony

Hi Carole, many thanks for the thoughts. I am going to contact my GP today and discuss my current situation. I am hoping I can get on the right road to finding answers… I hope you enjoy Christmas… Ian

Hi. I am contacting my GP today and hopefully get something sorted. I understand that nobody can diagnose on the site and would never expect that from anyone. I am in a very stressful place at the moment with low mood and thought perhaps like minded people could help me decide what my next move would be. The two replies I had have helped and I thank you for the time and thoughts… regards… Ian

Hi Ian,

I understand what it’s like to be stuck at home, when you don’t have a job to go to and cannot earn a living, it is very demoralising. It can also make you feel rudderless and without a sense of direction. I spent three years like this, in my thirties, when I was unemployed.

The strategy I adopted was to create a routine which gave a structure to my days. I kept good care with my appearance, had a task to complete every day and kept in contact with friends and acquaintances. It’s very hard to maintain one’s sense of self-worth without a job, so I had to create one’s own.

I won’t say I was happy but it did help me feel that I was in control. I know that that doesn’t address your health problems but I do know what it feels like to be stuck at home with too many unanswered questions.

Best wishes,

Anthony

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Hi… As an update I am now waiting for a referral via my GP to either a spinal consultant or a neurologist… I am then hoping to have a one off private consultation using my GP file and MRI… I have everything crossed… Ihope everyone on here has a great Christmas…

So, can I briefly clarify what you’ve said.

If I understand correctly, you’ve had ongoing spinal issues for some years. Had spinal fusions and MRIs of your spine over the years.

You’ve been diagnosed with RA and fibromyalgia. Have had manipulation from an osteopath but that’s not done much good.

You suffer with itching/tingling/burning in various body parts, back pain, leg pain, spasms and fatigue.

And are now waiting to see either a spinal consultant or a neurologist.

What I’m struggling to understand is whether you really think your various symptoms are spinal in origin mixed with RA/fibromyalgia, or are neurological. A spinal consultant is going to look at your history of spinal problems, whereas a neurologist would consider whether your symptoms are neurological.

You haven’t said, but have all your MRIs been of the spine? Have you ever had an MRI of your brain? Have any of your MRIs of your spine ever shown anything up that could relate to neurological symptoms?

It sounds to me that you should perhaps push for a neurological referral. If you see a spinal consultant, s/he will look at your spine only. But what you are saying (I think) is that you are concerned that your symptoms could be neurological in origin, in particular MS. To have this ruled in or out, you’d need to see a neurologist. Who could do a full neurological examination and refer you for a brain MRI, assuming they think there could be a potential neurological problem, beit MS or another disorder.

I apologise if I’ve misunderstood, or been unhelpful.

Sue

Hi Sue… Can I apologise for the late reply, Christmas etc. I think you hit the nail on the head. The NHS channels are contacting me regarding my next step, if I have not heard by the 2nd Jan I am chasing for a neurological examination/ brain scan. There has been no change in my symptoms since my last post, walking is still difficult, calf muscle spasms, itching on head neck and face. I was lucky enough to have a holiday over the Christmas break. My wife pushed me around most days in the chair so I could rest my legs. The odd days I did walk with a stick but it’s painful and the fatigue afterwards is so bad I have to rest and sleep a few hours… I have to get this sorted now as Ihave not worked for 6 weeks, the unknown diagnosis is really stressful as my life is on hold. After sleeping last night for 12 hours I am very fatigued an have rested today . My fingers are crossed that I can see someone soon, I am happy to pay for a consultation and an mri if required… Another day tomoz… Regards. Ian

Hi…Well we are into a new year and I for one hope he powers that be can help me with a diagnosis.

Perhaps Ps is anyone on this site can tell me if they are getting similar symptoms to mine. If you have read My earlier post you will see I am in limbo awaiting a diagnosis.

For the last two days I have been very fatigued. On Monday I had no energy at all the simplest tasks were harder than usual and the constant feeling of fatigue was exhausting. I rested most of the day by basically sitting or doing light tasks in the home.

I went to bed at my usual time 10.00 pm slept most of the night in fact I slept so much I got up on Tuesday at 1.00pm still fatigued and feeling the same.

The day went basically the same apart from the tingling that started at approx 4,00 pm it continued all night. The tingling was from head to foot it makes wearing clothes very uncomfortable. This is not an unusual event for me, the tingles started approx 6 years ago, I discussed this with my GP and was told “ it could be your liver due to prescription RA drugs, or washing powder”. I changed detergents, and we altered medication but I still tingled to the extent I had to put ice packs on my body at night to try and stop it. I can’t even put my face on a pillow as the tingling increases, At first I honestly thought I had lice or something crawling all over my skin, it drives me mental. I only slept two hours so woke at midnight, I tried to sleep again but after 2 hrs I was still awake, legs aching as normal, itching all over. I decided to get up and watch tv until 4.00 am and returned to bed to try again. I also notice something new to me with my eyes, if I look around say in circles or up and down with eyes open after say three repeated sets of movements my eyes ache and movement slows down and I become dizzy.

This is yet another night of being fatigued through the day, unable to sleep due to tingling or not.

I am not looking for a diagnosis just your thoughts if you get similar symptoms.

As I am not working at the moment, been off for 6 weeks now due to my legs being weak I can review this daily. my tingling continues today I got up at 8.30 so not had a lot of sleep, my head feels fogged, not in the mind to do anything really and that is not my nature. I am chasing my GP to contact my local hospital to sort out whom I see next to get a diagnosis but today the secretary is on holiday so it’s chase again tomorrow…Trying to stay positive. Best wishes if you feel the same or can provide me with some help…

Update… I have managed to get an appointment with a neurologist tomorrow afternoon. My fingers are crossed for Help…Best wishes to everyone.

Good. Try if you can to take someone with you to the appointment. Theres a thing I call neurologistitis, you go into the appointment, knowing what’s happened to you, what you want to ask and what you expect to happen. You think you’re following the conversation, understanding what’s said, what the next step is and what will happen next. You then leave the room, scratch your head and say ‘what did s/he said about X?’, and ‘what next?’, plus ‘eh?’

The other person might remind you of what you were going to ask plus be a spare pair of ears and spare memory to call upon if neurologistitis strikes you.

Don’t forget, if anything is said that you don’t understand, the cleverest thing to do is ask what s/he means.

Good luck. Let us know what happens.

Sue