I came across this forum from googling my symptoms…I am a 32year old Scottish female. I started to feel unwell around September last year. My symptoms started with a stabbing pain lower left abdomen inside my hip bone, and very painful periods and ovulation. my pain increased and I started to feel very tired. My symptoms include pain when my bladder is full, pain and urgency when need to open my bowels, the pelvic pain is like a big belt being pulled really tight round my back and pelvic area. The GP suggested IBS, and started me on mebeverine but this didn’t help. I was fitted with a coil, this didn’t help. I’ve now been referred to gynaecology for suspected endometriosis but my symptoms have changed again and I don’t see how they can be a gynae issue.
My fatigue is totally overwhelming exhaustion. I start the day not too bad. But my lunchtime I’m so exhausted, it’s a struggle to keep my eyes open. I’ve also been feeling dizzy and spaced out. I feel like I’m drunk when I’m not. I feel off balance. I keep getting blurred vision, like I’m struggling to focus. I’ve been getting pins and needles in my legs and feet and now in my hand. Sometimes it feels like my leg has gone to sleep the same way it feels if you have been sitting awkwardly. All these symptoms are worse when the weather is hot (I work as a gardener) they can come on so suddenly.
I went for an eye test and optician said he couldn’t see any problems with my eyes, I got new glasses but these don’t seem to have helped my trouble dividing. This is particularly bad when driving. Im also at uni and really struggled this term, I can’t concentrate, reading is very difficult and leaves me exhausted?? My grades dropped from straight As to Bs and Cs.
Im worried about going back to the GP as they have already decided this is s gynae problem and I’ve been told there is little they can do until I wait for my appointment. I don’t want them to think I’m a hypochondriac but i really want to be getting on with my life, I’m struggling to do anything at the moment
can anyone help? Does this sound typical of ms or more likely to be gynaecology problem? All my bloods tests and pelvic ultrasound have been normal
thank you for any replies xx
More than one thing can be the matter at once. You might have gynae troubles but with other, quite unrelated, things going on too, for instance.
I understand your worry about keeping beating a path to your GP’s door, but when people aren’t well that is sometimes the only sensible thing to do. I think you should consult your GP again.
Alison
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Back to the and put your concerns across, assertivley, then ask to be referred for an mri. If you can afford it, pay for one privately. It will cut out the wait and might provide some answers to your poor health. Good luck.
A gynaecology element sounds likely, there may or may not be something else wrong as well. bodies are complicated things. May be helpful to split symptoms into gynaecological and other when talking to your GP to keep things simple for them. If they are already sending you for a lap to investigate the endo, then you don’t need to confuse that potential diagnosis and you are allowed to have more than one thing wrong with you (not saying there is, but you shouldn’t feel like you are bothering the GP and saying you have something else wrong with you as well as the gynae stuff, let them sort out what’s what)
FWIW I had Stage 4 endo and, as it turns out, adenomyosis. I had weird vision on a monthly basis, extreme tiredness chronic pain, particularly in my legs, unbearable periods, etc. Eventually diagnosed with endo and had a lot removed and at the same time had the mirena inserted. The mirena made my actual periods much better, but I felt generally not right and continued to have the chronic pain. I Felt peculiar the whole time I had the mirena, and my period vision thing was there a lot more, but you’ll find the medical profession are quite hostile to any suggestion that the mirena can make you feel ill. Anyway, I went on to have a total hysterectomy and felt much better. Interestingly, the weird vision thing did resolve immediately with the hysterectomy.
Endo can literally grow anywhere in the body and it is exhausting. It is commonly found on pelvic ligaments for example. Pelvic ultrasound cannot diagnose endo, although in my case it did show that my womb lining was several times thicker than it should have been but that was the adenomyosis, blood tests don’t show anything either. You have to actually have a lap. Took 18 years before anyone took me seriously…
Having said all that, definitely go back and mention the other symptoms, but keep going with the endo investigation too and look after yourself.
Best of luck, it’s no fun when you feel so exhausted.
(As I don’t know if I have ms yet, I’ll leave it to others to comment on that bit.)
Thank you for the replies. I’m not convinced it is a gynae issue. I saw my GP last week and she did a neurological assessment, apparently I failed the test where they run a sharp object down the sole of your foot (my toes stretched up) and I was wobbly with my eyes closed and feet together. All my reflexes and everything we’re fine. GP suggested chronic fatigue syndrome/ME. i read up on this and it explains many of my symptoms but not everything.
I had a really bad ‘attack’ of pins and needles at the weekend, it felt like electric shocks through my legs, and on my face?? Never experienced this on my face before and it was horrible. I also get numbness on a hand and sometimes my leg/foot ‘goes to sleep’ I’m not sure if these symptoms relate to CFS but they are not a big problem just annoying
my GP does not think it is MS and she said normally it presents as one focal point problem rather than lots of different problems of different body symptoms ie I now have pins and needles, blurred vision, fatigue, dizzy spells, off balance, floaters in my eyes, jelly/numb leg, strange sensation on my face, and feels like an ice pole on my right forearm.
I have another appointment on Friday with my GP and I am meant to have read the things on CFS and tell her if I think that applies to me. But it would be good to hear from anyone who can tell me if it is worth pushing to get checked for ms just in case.
Thank you xx
I am new to this forum and was hoping for some advise or opinions please.
I was hospitalised in may 2013 when my whole body went into spasm and I could not do anything. In April 2015 I woke up and could not stand and the whole of my right side was pins and needles and numb. Doctors thought it was a stroke but ruled that out but referred me to a neurologist as mri scan was not normal and showed lesions. I have had another mri with contrast but something went wrong so it has to be repeated. Lumbar puncture negative! Hospitalised again in April this year with severe pins and needles in right leg again. I was put on intravenous steroids for three days which stopped it getting worse as i it travelled up my arm. I have weakness in my right arm and leg now! I am on 20,000 units of vitamin d replacement therapy as it was very low. my Neurologist thinks its ms but mri is not typical of this although it is abnormal. I have just received a letter saying I am in the spectrum for Cis and ms but its not ms. I am totally confused. My brother has Tubular Sclerosis and my sister had Guillan Barre Syndrome four years ago. not sure if this is even relevant. What does anyone think??
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Glad you are getting support and your GP is listening.
I am learning that a diagnosis of ms is not given easily. There isn’t a test as such for it, it’s just a question of collecting evidence, and there are other conditions which present similarly, especially given that everyone’s ms presents differently anyway.
Neurological symptoms can be caused by so many things, and my recent, very painful, experience tells me that GPs aren’t really equipped to tell what is and what isn’t important. And neither are people on the Internet 
so I am definitely not giving you an opinion on what is causing your symptoms, for that you need to see a neurologist because the whole thing is so complicated - I thought I had heard of every neurological condition possible, but today learned about Fredrick’s Ataxia, so there are probably loads more possibilities out there that would explain your symptoms.
I don’t know much about CFS/ME but there isn’t a definitive test for that, either, so in your position, and with the benefit of hindsight gained from my own health over the years, I would push her to refer you for a head and neck MRI as well.
GPs don’t like doing this because almost everyone has something that shows on their brain scan and so people panic, but as long as you understand that it is unlikely to give any definitive answers, and you can cope with the inevitable stress and uncertainty of it and of knowing that there is something on your brain (not sure how old you are, but apparently it is unusual for anyone over 30 not to have something, and the radiologist reports on everything they can see, so then the report comes back to your GP, who can’t really interpret it, so then they send you to a neurologist, by which time you are a trembling wreck!) I would politely, but assertively, push for further investigation of your neurological symptoms via MRI of head and neck if only to provide a baseline for later in life. That’s me though,
Take care xxx
Thank you so much for the reply. I have an appointment with GP on Friday so will ask for an mri. Ps I am 31, so will be prepared!
Thank you again, much appreciated xx
Just saying ‘Hi’ and ‘welcome’ really Donzi, as I don’t have anything useful to tell you.
I am in limbo land, like you, and also thoroughly confused by the whole diagnostic process. It’s very frustrating. Maybe someone more knowledgeable will be along in a minute.
hi, im also new to this site forum. i have been having lots of strange goings on too, pins and needles down legs and arms, im dizzy most of the time and very unsteady on my feet, i also have been getting back and pains in my sides. i have had a mri on my back,nec and head back in october but they where all clear. ive been back to a neurologist who has sent me back for a mri on neck and head but has already said i DONT have MS!!! hs as said if this mri comes back all clear then he can do no more, so i should go back to my gp and to be referred to a pain team( im al ready on lyrca,tramodol,baclofen,amitryptline and morphine) not sure what they can do for me. i also have urine incontinence and sometimes retention plus bowel problems. i feel im not getting anywhere near a diagnosis.Sorry for the ramblings on but this as been going on for 4 years now i im at the end of my tether.Any advice would be much appreciated. Matt.
Thanks for your welcome. I really hope to hear from someone soon and hopefully they will be able to shed some light for me.
I have had a call from the hospital today asking me to go in next Wednesday, Thursday and Friday mornings for intravenous infusion to help with my symptoms. Hopefully this will help me.