To just want to cry after seeing doctor

[Soubriquet]

I’ve been in constant pain since August. I’ve been to A&E 3 times last year to try and get a handle on it.

I have symptoms 3 pages long. I’ve had numerous blood and urine tests. I’ve had an ultrasound, I’ve had a CT scan, I’ve had an MRI and it’s all clear.

I’ve been waiting since September for an endoscopy. I was supposed to be on the urgent list..heads nothing yet. He’s told me to ring them and push for it to be done quicker. Not sure what my word will do but fine I’ll do it.

I went to the doctors today (first time this year) because the pain had increased noticeably and the medications I have weren’t working.

He did his mumble bumble, gave me more blood tests to do, more urine tests to do, and then prescribed me….sunshine.

He even asked me if the wheelchair I was in, which I have a blue badge for, was necessary!

Im just so frustrated. I can’t walk properly. Literally stumble to the toilet and that’s it. I can’t do stairs. I can’t stand and cook. I have to rely on my husband as a carer.

I can’t be a mum to my kids because I’m having to be stuck in bed as it’s the only place where I get some form of comfort

I’m just stuck.

He asked me what I think it could be, and I mentioned MS and fibromyalgia.

Got told it’s extremely unlikely to be MS as no one else in my family has it, and there’s no point diagnosing fibro as the it’s a waste of my time and doesn’t benefit me.

I just want to cry now

What a horrible doctor. Have you tried accessing support privately?

I have MS, it’s not hereditary! See another dr urgently. I’ve had my diagnosis 16 years now and nobody in my family has it, not even any similar symptoms. You know, some drs need to go and bury their heads! Hope you get an answer soon xx

As somebody with Fibro, your GP sounds like an A*SE! However from experience since my diagnosis with Fibro 10yrs ago, a majority of GPs say it’s all in your head, nothing wrong with you blah blah blah…. I would book to see a different dr and if possible have your partner there to support you getting your point across.

Many people with a variety of ‘odd’ symptoms have autoimmune disease. The test for that is missing from that list- its called an ANA test and is the first stepnin identifying a wide range of autoimmune issues.

I agree. I have a friend with MS and another friend whose DH has it. No family history of it in either of those cases.

OP have you been tested for H Pylori? I can only comment on the chronic pain in your upper Abdomen. Absolutely disgraceful to be waiting for an appointment for this length of time. For any patient presenting symptoms which have a major impact on your day to day living, a GP a should be raising the roof with the hospital.
This hasn’t happened though, I’m disgusted on your behalf.
I’ve read your posts twice and would advise the following:-
Firstly order some Mastika 500mg (you can purchase it on line, it’s a natural product with anti bacterial properties, which will do you no harm even if you test negative for HP. It soothes your upper tract and stomach.
Secondly absolutely stop with immediate effect any food or fluids with acids or seeds (of any kind) within them. They act as an inflammatory agent.
Thirdly hit that phone asap to the hospital regarding that appointment, I cannot tell you how livid I am about this. This is not acceptable and no excuses, and I feel the excuse could be that the paperwork has been mislaid or “not on the system”.

I almost forgot another important point if to your knowledge you haven’t been tested for h pylori ring that GP up first thing on Monday and ask this to be added to the list for your bloods.

I apologise I’ve had a really long day if any more pointers come into my mind I’ll post up again, and don’t hesitate to ask for advice anything “tummy” related.

MS is NOT hereditary! So why does it matter if there is a family history? Also that and other things used to be frequently misdiagnosed in the past.

I am sorry to read of your struggles. Have you ever had your calcium and your parathyroid hormone levels checked? I see you are due to have a bone profile check so that should include calcium. Hyperparathyroidism can cause many unexplained symptoms, I belong to a facebook group where sufferers have a variety of symptoms including those you describe. Worth getting it checked out. See: https://www.hyperparathyroiduk.com/?fbclid=IwAR0hcfQGqniBy4rmoa47qHVK1sSbys98cjuM1GXhZUk73HIr5i4wEXYUNIo hope you get to the bottom of it!

This sounds like Fibromyalgia. I have it and if anyone presses on most parts of my body I shudder with pain. It’s all over the pain and has very similar symptoms to Lupus. I have migraines, neck, back pain and cannot dry my own hair as I can’t keep my arms up. I can’t bend over and like you my husband does so much in the house and for me. I recently stopped having caffeine and have decaf tea/coffee and am feeling a little better in as far as migraines.
i go to a pain clinic and have cortisone/pain relief injections, was referred by my GP but at moment waiting lists are horrendous. Stretching helps but you have to be careful. I have ibs and pains in my chest/ribs. I have to eat little and often and slowly. I have been told I have possibly Costocondritis (look up online nhs site) this affects all my upper body and around my back and is extremely painful at times. FM doesn’t show on scans. You need to see a Rhematologist who specialises in Fibromyalgia but only pain and lifestyle is addressed, as no cure. You may have Polymyalgia but I think that shows in your bloods.
I also suffer from great anxiety and depression. I believe mine was caused through the emotional stress of a bad marriage and divorce. Try upping your Pregabalin slowly to a level where you can manage your pain.

I have M.S, I’m the only one in the family. The lesions show up on an MRI, so if you’ve already had one of these they would have picked them up. You do need it of your head and body. I was misdiagnosed with M.E for 7 bloody years, and bugger all was done to help me. Once the M.S diagnosis was made everything changed.

Recently I’ve had to pay for my daughter to see a Rheumatologist and Neurologist. Her G.Ps tried to refer her but the staple answer they got was she didn’t fit the NHS criteria. I could see signs of neurological issues and she wasn’t well at all. The neurologist agreed and arranged for a full body MRI. Thank god I had the money for the consultations, it turned out she has a brain tumour, benign thank god, but does need removing as they can kill if left.

I feel your pain, you know your own body. At times as a woman I do feel we’re not believed, and it’s bloody frustrating. Many times we are gas lighted, I’ve had it and my daughter has. I had a flippant Dr when 18 minutes months after having a broken arm I was still in significant pain, he wasn’t fully on board and didn’t believe my explanation of just how painful it was. I was kicked by a horse and helped on a yard and I’m quite a tough cookie. He reluctantly agreed to another x-ray, it was still broken. He phoned me the day after my X-ray and apologised profusely. Hopefully he’s learned his lesson.

Don’t give up and keep on knocking down doors. I agree with some of the others that Rheumatology could be the department that’s required. I know it’s exhausting pushing and battling all the time, but you have to, you know something isn’t right and someone will know what it is, you will get there, DONT GIVE UP HOPE!

I was told by a surgeon everybody in the UK should be taking Vitamin D

I believe it can certainly be brought on by trauma. Two women I know got it after they were widowed at quite a young age and my friend who has it was told hers was probably brought on by the birth of her first child. She was advised not to have any more children and she didn't.

One of my DDs has a friend who was recently diagnosed with a condition where nerves are trapped in abdominal muscles, causing severe pain. I can't remember the name of the condition. It's a rare one.

Maybe polymialgia? Agonizing pain. When I had it, it took me half an hour to crawl from the bed to the toilet. The GP prescribed prednisolone which eventually cured the pain.

Pancreatic cancer. All these symptoms fit and it’s hard to spot.

Another one voting for vitamin d, I take it regularly and have been for months and my eyebrows have actually grown back after being hairless for years.
Also apparently it helps your immune system so might be worth a try.
It's good to take a look at your diet and make sure you're not deficient in anything else.
Sadly some autoimmune or neural conditions are hard to find, I had mystery pain a while ago that affected my whole upper body including my neck and shoulder blade, it flares up from time to time. I now believe it was a trapped nerve, it was bloody miserable and doctors didn't have a clue.

I see you are being tested for celiac disease which is an auto immune disease that does not begin and end in the gut but attacks the whole body could possibly be celiac disease .

Not until after op has an endoscopy as the result won’t be accurate for gluten or celiac.

@Snippit how worrying for your family & hopefully your dd makes a good recovery.

You're unlikely to have MS because no one in your family has it. Well these conditions have to start somewhere, also has he never heard of exception to rule.
I'm with your DH I think you should complain more so about the comment about your wheel chair being necessary. We're not even talking about failure here so much. Even with the best determination effort and will in the word there can still be mistakes and failures. This is total ignorant and dismissive behavior.
Another problem with his solution. What when there is no sunshine. Assuming you're in the UK we're not exactly noted for our 100 degree weather are we.

Has anyone ever suggested endometriosis? It wouldn't explain your foot pain, although it can grow anywhere in the body or head except the spleen, but could explain the abdo and back pain. I had suggested it to my GP several decades before it was confirmed during an op to remove my ovaries. It was completely missed on Ultrasound, MRI and CT scans, despite my entire abdomen being glued together with a web of adhesions. Walking more than a few feet is agonising for me as it increases the abdominal burning/tearing feeling tenfold. The only way to confirm or rule it out is via a laparoscopy. Good luck and don't take no for an answer.

Sounds like your GP is suggesting hypochondria - not that I think that! Seems uncaring. See someone else if you can. Good luck.

I have been diagnosed with fibro. A lot of people tell me it's made up because they don't know what's wrong with you etc... I fully believed it until I was seeing a Neuro Surgeon in Manchester about my TN and mentioned I had recently been diagnosed and before he could scoff at fibro, I said I understand there is nothing can be done as you 'as in the NHS' can't do anything about it as you don't know what it is... he stopped me there and said we absolutely do know what it is, your nerve pathways are scrambled, your body gets the signals mixed up and doesn't know if you're OK or not, so it puts out an alert you're in pain. A simple knock or poke can cause a deep extreme pain, where as to others it wouldn't affect. Or you might simply just be led down relaxed and boom, you're body thinks you're in pain. It is a valid problem, they just don't know the best course of treatment yet. I would recommend you ask your doctor for amatryptaline. I believe the pregab and garba medications are not the way forward anymore as was told to me by the pain management clinic. Also get a new Dr. Took me years and many Dr's. But I finally found one who is helping me.

Fibromyalgia can’t be diagnosed and is the resulting diagnosis once every thing else is eliminated or

Hi @Soubriquet
I'm the only person in my (enormous) family to have MS. I'd never even heard of it before I was diagnosed so tell ya Dr to not speak of what they don't know.
It's not hereditary. It can be caused from an accident/trauma.
I had various 'viruses' before the Dr at the eye hospital suggested it due to optic neuritis. I then had a lumbar puncture and mri scans to confirm.
If you'd like to talk about anything please send me a message.
I'm sorry if I've repeated anything already said but just did a quick speed read.

Could be perimenopause