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Diagnosis help!

Hi all, This is my 1st post and just looking for any advice or help with my health issues!

I’m 35 year old, 6ft tall, 11.5 stone in weight.

I have never really had any major health issues until now. About 5 years ago I hurt my lower back at work. I couldn’t walk so I never got it examined, took about 6 weeks before I was back on my feet again.

Since the above incident I have visited the doctors about 20 times over the years with these symptoms.

chronic constipation, urinary problems, shooting pains down left leg, pains down my arms and tingling, stiff painful neck and shoulder pains, extreme fatigue and tiredness, muscle aches and lack of strength. ( recently found out that a numb bum can be associated with back problems which I also have)

Now these symptoms flair up and go away except the chronic constipation. Currently in the middle of one of these flair up’s and going into my 3rd week with it. ( can’t work )

I have been tested for everything out there and they diagnosed me with IBS-C because they couldn’t find anything, I now have been referred to a Neurologist and awaiting an appointment but it could take up to 12 weeks.

Could a lower back injury cause all these symptoms? Could this be MS?

Really struggling just now…

Thanks for reading this.

Craig.

Dear Craig, Try not to panic. Your symptoms may be caused by a number of conditions and even if it is MS, finding answers to ongoing health problems is empowering and helpful.

I am recently diagnosed with MS (May) and I too couldn’t bear to wait and saw a private neurologist. My GP was a good here because when he realised the waiting times (I was told 5 months), he sent me for an MRI, on my brain (2 week wait) and I had these images to show the private neurologist (2 week wait - GP referred me). It cost £130. He diagnosed, wrote a report for the NHS neurologist and my Dr and prescribed some steroids for short term symptom relief.

Amongst other symptoms, chronic constipation was one of my first. (I would need lessons covered (I am a teacher), just to sit on the loo for hours!) I am currently on a vegan and fish only diet (which has helped massively) and take a senokot each evening. (there are other medicines to help). Oh, and I try to drink lots of water.

To answer your other question, ‘can lower back injury cause these problems’, i am not certain that you will get a definite answer. I do believe though that ‘stress’ (such as accident at work), can cause many conditions.

It sounds as though you are beginning to make progress in discovering the cause of your symptoms and when you need reassurance return to this forum because the people on here are so helpful.

good luck and warmest thoughts Ali x

Like to add some more symptoms which I get but don’t know if they are in my head or real!

Rubbery stretchy skin around my arm joints, bum, and down legs. ( like deterioration or something )

Trouble with coordination when walking.

Last week the whole room felt like it was spinning.

When i’m suffering from extreme fatigue my eyes become blood shot and very sensitive.

Short term memory is really bad, struggle concentrating and very irritable with mood swings.

Thanks

Thanks for your reply Ali ( good advice! )

Really had to drag myself out of bed this morning and it was painful just trying to hold a cup of tea.

I’m happy that you got diagnosed so fast and I hope your on the path to recovery or at least managing well!

Have thought about going private several times but I’m worried about all the costs involved, I’m currently supporting my wife with her further education ( training to become a teacher ) and the more time I take off work due to this condition the less money I have ( catch 22 ). I may have to go private tho because I have lost all faith in my GP practice.

Also tried every diet out there and eliminated all common food allergies but nothing works, currently on a vegan diet but with no fish. Tried all laxitives on the market and nothing works except Lactulose but this also makes me feel sick and have really slow transit times. Also currently taking suppositories which are nasty! I also drink plenty of water.

I try not to panic and I always try to maintain a positive outlook on things but It’s just so frustrating not knowing what is going on with my body. And like I said I have been tested for hundreds of things but all come back negative. (I feel lost!)

Even a sympathetic ear from someone who has been through similar symptoms makes all the difference!

Thanks again Ali.

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Hi Craig

One thing you have to remember is that MS can include many symptoms. It’s likely that some or all of what you’ve been experiencing could be due to a neurological problem, maybe MS. But it’s also possible that there is another cause entirely, for example your back injury.

What some people do is to get an initial appointment with a neurologist privately, then get referred back to the NHS if the neuro you see thinks that you’ll need tests (which tend to be where the biggest costs are). So one way of doing this is to find out the name of the neurologist you’ve been referred to. Phone the local hospital and find out from the appointments team roughly how long the wait could be. If it’s too long, then look and see if that neurologist also has a private practice, and see about getting referred to their private practice. Alternatively, see if there is a private MS specialist neurologist in your area who also has an NHS practice and get your GP to refer you to them.

The other thing you can do quite apart from the other problems is to get some help with the constipation. You should be able to self refer to your local bowel and bladder service, or again, get your GP to refer you. There are other things apart from lactulose and laxatives which can be prescribed. One option is Movicol, this is one of the best constipation remedies (it’s also known as Laxido or Magrocol). There are other products that can also help, castor oil or magnesium (even Milk of Magnesia). You can also think about the external factors, such as your position when trying to go to the toilet, i.e. the best position is to have your feet slightly higher, so try to raise them. It’s worth persevering with the different options. Living with chronic constipation is horrible and can by itself cause problems.

Sue

Thanks for reply Sue,

Yeah I will defo look into that to see if the neurologist has a private practice or if there are any specialists in my area.

Thanks so much for the advice…

Yes living with this chronic constipation is horrible and I’m possitive it’s adding to my symptoms but honestly I have tried everything. I took movicol before but all it did was cause me massive amounts a painful bloating I honestly looked pregnant! tried taking magnesium supplements which did nothing, also tried Constella which was totally unreliable. Currently on a good diet program, taking prebiotics and probiotics, lactulose and suppositorries. From my research 85% of people with constipation also have SIBO, told my GP this and he hadn’t heard of it and wanted nothing to do with the idea ( a simple breath test would confirm this, and patients need antibiotic’s to start to feel better). But then if I have damaged the nerves in my lower back then this could cause my bowel problems. I get so confused trying to figure this stuff out… I always try to be logical with my symptoms and try to keep an open mind… and I am grateful that the NHS has ruled out so many nasty conditions that it could ov been but I am also angry and depressed that nothing has been found.

will let you know how I get on with the neurologist, and thanks again Sue.

If you do see a bowel and bladder specialist nurse, you could ask about anal irrigation. It’s a method of emptying your bowel using warm water basically pumped (by you, using tap water) into the rectum. The water is then expelled together with the waste material (euphemism city here today!). It takes some investment of time, and doesn’t work for absolutely everyone, but many people swear by it to solve their chronic constipation problems. Have a look at https://www.coloplast.co.uk/peristeen-anal-irrigation-system-en-gb.aspx

Sue

Thanks sue, I am already using a similar system incase of emergency and it does help for short term relief. ( you can always be blunt with me :wink:

cheers

Dear Craigy123,

The same as you. Dizziness, memory loss and constipation were my three earliest symptoms that I went to the GP with. I then got pins and needles and numbness.

But even though our symptoms are similar, remember that a number of conditions might be the cause.

The private neurologist that I saw (he had access to my MRI) cost £130. A lot I know, but it has been money well spent. He has been very useful because he gave me his mobile number and email for questions, he knew that I would be fragile/emotional following his diagnosis and would not get an MS nurse straight away. He advised me that here, my GP can refer for quick MRIs if they are needed and he advised that I should not spend money on MRIs, lumbar punctures etc. I phoned the hospital at least five times to ask if there were cancellations and they finally wrote to me and gave me an earlier appointment. So although they said five months, I saw the NHS neurologist after only two months waiting.

You can also seek out the MS nurse in your area and see if you can contact them over the phone for advice and this website too has a helpline (phone and email) (which I have used twice).

I do hope that you fnd some answers and some relief from your symptoms soon. Most importantly, though we have busy lives/families/work/children/ etc, try to find real moments of rest and lie down flat.Oh, and I am learning how to meditate too!

Kindest regards Ali

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Hi Craig, I am sorry you are going through all this. I am as yet undiagnosed but in the early days of my symptoms I was having really bad mood swings. I started taking 300mgs of magnesium citrate a day and have never looked back. It is also supposed to help a little with constipation. Men need to take 450mgs per day.

Best wishes.

Marjie xx

Thanks Marjie, I used magnesium oxide instead of citrate. Will defo try some magnesium citrate.

Cheers.