Achalasia and back pain, possible MS?

New diagnosis and before diagnosis
1

Hello, I am very new to researching MS and wondered if anyone had any information about a possible link with Achalasia and MS.

My partner had Achalasia diagnosed around six years ago. Achalasia, is a disorder in which the lower oesophageal sphincter fails to relax properly, making it difficult for food to reach the stomach. Recent research has shown it is an auto immune disorder.

So after diagnosis and surgery life returned to “normal” and although his health is never great we have been getting on with life until twelve months ago when his back seized up.

Thinking it was due to working at a computer for many hours a day he has had Physio (NHS), Chiro (private), sports massage and for the last 8 months has been obsessively swimming for 1 hour plus a day.

He takes an anti inflamatory twice a day and pain killers (zapain) when it gets too much.

While his strength and fitness has greatly increased the tight feeling just will not go away. So much so that he cries out when getting out of bed and is in pain all of the time.

He has none of the “classic” MS symptoms from what I have read. He does complain about tired hands (some tingling on a couple of occasions but nothing recently).

We are in the process of trying to see a GP but our surgery is not taking pre bookings so it is a telephone lottery ion the day!

Without classic symptoms will the fact that he already has an auto immune issue be enough to warrant further investigation?

My partner is mentally strong he does not give up without a fight. He has managed to work (from home) for the past 12 months but he is getting so worn out and the strain is really starting to show.

Any advice or opinions greatly received!

2

Hi

Well it doesn’t sound like an MS thing. But basically you/he needs to get properly checked out by a doctor.

I can’t advise in how to even get as far as seeing a GP, they are so overstretched at the moment (it appears countrywide) that all you can do is cross your fingers and hope.

But that is his best bet, ie see a GP and ask their advice. If they think there could be a neurological basis for the problem, then referral to a neurologist would follow.

Really there’s nothing I can do except sympathise. It sounds like life has been hard enough for your partner without this back problem plaguing him.

Sue

3

So when is a bad back not a bad back…

3 locums later…

1st locum, 20 mins of prodding and listening to symptoms, total blank… just keep swimming.

2nd locum prescribed Robaxin (did nothing) and said it was no her place as a locum to refer.

3rd locum told him to take up Pilates (as if swimming 1000 mtrs every day is not enough) referred him to Physio , reluctantly prescribed Amitriptyline (finally some help with the pain!)

Physio totally baffled why he was had not been sent for tests as it is clearly not a bad back! Told to book bloods and go back and see his GP.

Finally saw a practice DR and he has been referred to rheumatology (though his bloods from the surgery tests all came back fine), it’s a start?!

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Hello, my Wife has achalasia and was diagnosed with relating remitting MS 18months ago. My Wife is in her early 30’s and suffered with achalasia since her teens and was not diagnosed for almost a decade! The doctors didn’t know what was wrong with her so kept sending her off with another drug to try… a locum doctor saved her life. She has had surgery to improve her achalasia which will need to be repeated again in the future. Her oesophagus muscles have been sliced to weaken them and her food-pipe is now attached directly to her stomach. The number of years of abuse her body went through before being diagnosed is terrible. My wife had optic neuritis and then loss of feeling in her body which lead to her being diagnosed with MS. We suspect the trauma achalasia caused on her body brought on MS… both are autoimmune diseases. Achalasia is so so rare that there is just no research to support this. My wife suffers with back pain too just like your husband.

1 Like
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Hi Twirly, sorry, I did not see your response.

We were “lucky” with the Achalasia diagnosis. My partner left the symptoms for so long he was a classic case and diagnosed straight away. He had a failed op (due to stopping breathing during surgery) so it took a while to get sorted. He had the fundoplication and also the Heller myotomy which have worked amazingly well.

I have been trying to get recognition that Achalasia being an auto immune issue which effects the central nervous system could be linked to MS but you are right, we have hit a brick wall with specialists, there is just not enough research. One nuro even asked if he had difficulty swallowing, well HELLO, he has no peristalsis because of auto immune nerve damage!

We are still trying for a diagnosis and have a Evoked potential test booked soon. It will be interesting to get the results.

6

…

OK i used to swim in competitions many many moons ago. I could never do breaststroke as it gave me awful back pain. I was a backstroke swimmer and could move pretty fast in the water, but i never could do a long stretch in crawl either, as just lifting out head to breath would give me backache.

I think personally he is over swimming. It wont stop MS thats the first thing, and yes swimming is classed as low impact and good for back pain, it can actually have the reverse affect.

tell him to switch over onto his back and just do some light swimming in back stroke, or stop for a few days, and see if it makes it worse or doesnt make it change.

Look I waited over 10 years to finally be diagnosed with MS. If it is MS it will show itself. Mine weirdly enough was the two VEP tests i had, one in 2008 and the other in late 2015. In between i had MRI which showed lesions over time in different places on my spine.

Not worrying about it for a few more weeks wont change the outcome, but will give you both a rest from worrying about it if that makes sense.

He is actually as fit as a butchers dog now, and in good position to fight MS if it is that, so have a break now from swimming and worrying and do some normal stuff. He had a pretty rare operation which in itself can trigger things. He is ok with that now so one thing down. You just have to get some life for even a little time.

swimming is not going to stop MS and it sure isnt stopping his back pain. I think also if he sees the rheumy when i saw one they referred me also to neuro. so it can be useful. He needs to have a spinal MRI amazed he hasn’t had one.

so wait for vep tests and rheumy appointment have a break from worrying about it. and just go and enjoy yourselves. Maybe he could see an acupuncturist or talk to someone who does BOWEN its an amazing treatment for back pain.

It will get sorted but it can take time. I do think he is over exercising IMHO.

ON ANOTHER POINT. Is he eating properly as he is burning a huge amount of calories every week (well depending on his stroke and speed), and recovering over time from poor nutrional input with regards to his other issues?

Has he been checked for osteoporosis? just a thought. I might be tempted to put him calcium and vit D regime, and magesium.

sorry i have brain churn this morning probably dont make much sense. but i was a lot younger boy was i when i swam 1000 metres a day lol.

xxxxxxxxxx

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Thanks for your response, he had to back off the swimming due to a persistent chest infection. He was not a happy bunny. Swimming is the only thing that helps him feel like he can stretch (he can’t complete a whole body stretch , as in arms up over the head, as it’s agony). He is clawing his way back after six months of not swimming. It’s not easy to get to the pool when you have to roll out of bed because you are too stiff to sit up, but it is the only thing that seems to give him some respite from the stiffness. He is a very competent swimmer and varys his strokes to avoid damage and stretch different areas.

He eats well and we have a healthy home cooked diet so no worries on that score!

He has been checked out and he has not got a “bad back” as such which is difficult to explain to people when so much pain is felt in his back. No Osteo problems (he has been checked), rather he has intense stiffness and awful spasums. Also the feeling of the crushing round his ribbs/MS hug is generally in the background on a good day and unbareable on a bad day. Along with pain and other symptoms.

The final symptom to appear is loss of part of his vision, we were actually excited about this one! We finally have something that can be seen! An inflamed optic nerve.

More tests on the horizon.