I am new to the site and looking for a bit of advice… apologies in advance for the length of this post/novella but I have been in a kind of limboland for the past 8 years.
At 19 I had what my GP describes as my ‘1st incident’ - incident of what I’m not sure. My legs became very painful, stiff and my movement was restricted; so much so that I was housebound for 3 months and told by one ‘charming’ university GP that I should “just deal with the fact that you will never walk again”. In addition to the joint stiffness and pain I had extreme fatigue (sleeping up to 18 hours a day), weakness, mental foginess and poor balance. At this time I was referred to a consutant rheumatologist. He did numerous blood tests focussing in particular on Ankylosing Spondylitis (which my father and many of his family have) and Rheumatoid Arthritis (which my maternal uncle and great-aunt both have) My test for HLA-B27, the genetic marker for AS, came back negative as did the test for Rheumatoid factor but my C-reactive protein levels were very high. I was told that there was no condition that could be diagnosed and instead I had ‘acute infammatory arthritis’ as a result of a virus. I was prescribed a collection of painkillers, NSAIDS and pills to protect my stomach, given physio and accupuncture for pain management and to retrain my left hip to function and sent on my way.
At 21 I had another of what my GP calls ‘weird incidents’ where just before my university finals I became even more unsteady than usual (I’ve always been clumsy and prone to falling over) and developed a severe stutter, shaky hands and a weakend grip in my left hand. I was told that it was stress and an overhang from the virus at 19 and sent on my way.
Since then I have had between 1 & 4 ‘flare ups’ a year. Mostly, they result in me having more agonising pain than usual in my left leg, extra weakness in my left arm and fatigue. Each time they do blood tests my CRP is elevated. Currently I am having another ‘incident’ that has lasted about a month (so far) it started with:
pins and needles in my hand and feet
an inability to grip things properly (lots of dropping stuff)
fatigue (again sleeping 14+ hours a day)
difficulty finding words - I know what I want to say but for the life of me I can’t get it out!
mental foggines and extreme forgetfulness
feeling of bugs crawling over my skin and scalp, especially at night
pain - oh gosh pain! Particularly down my left side.
desparate desire to urinate (up to 5 times a night and more often in the day. In fact I’ve had to go twice while typing this!) and
lack of balance.
In between these ‘incident’ I am generally well, although I do get daily joint pain, am unsteady on my feet (seem to trip over my right toes reguarly) and have a ‘nervous’ tummy. This latest flare up has resulted in me being signed off work for 2 weeks - again with ‘acute inflammatory arthritis’ given as the reason and another referral to the rheumatologist. I feel like I’m going round in circles and at 27 I move like an old woman
I guess why I am writing this, is because I was wondering if anyone has any advice? Should I be asking to see a neurologist, rather than a rheumatologist? Should I be asking for a CT or an MRI seeing as in the past ultrasounds, x-rays and blood tests have ruled many other auto-immune conditions out? Does it sound like MS? I know it could be many other things too but any advice would be greatly welcomed.
Finally, apologies for the length of this but I am getting desparate after 8 years of this!
Hi I think once you have something in your head, you will not rest until it is proved right or otherwise. So, personally, I would be discussing your thoughts with your GP and asking for a neuro referral. Catherine
Thank you for your advice. It’s not that I think it is MS, it’s just that I’m fed up of 8 years of having the same kind of invesitgations off and on: blood test, xrays, utrasound of hip and being given the same answer: ‘we can’t find anything to give an official diagnosis’ but the symptoms still coming and going. I am starting to feel like some people (particularly colleagues) think I am a hyperchondriac but I know that there is something wrong; I just don’t know what! My mum - bless her - is worried to death and struggles to talk about my health without crying and my husband is so stressed with it all that I worry about him. I’m booked in at the doctors again on Thurs, so I may mention it then but the problem is at our surgery its always a different GP.
It’s awful … you know your mind and body better than anyone else so it must be so frustrating to have had eight years of unresolved issues. Your symptoms sound very similar to mine but I’m no expert and what I see on this forum, is how many other health issues mimic MS. But only a neuro can determine what is going on if it is neurological…and it sounds like you’ve had every other investigation. So tell your GP your concerns and try to be pleasantly assertive in asking for a neuro referral. Keep us up-dated and good luck.
I’m rather astonished that you haven’t been referred to a neurologist already! I guess everyone got hung up on the arthritis family history and didn’t think beyond that, but given that rheumatology have come up blank, surely neurology is the obvious next step??
The fact that you’re peeing for Britain may mean that you’ve got a urinary tract infection - they don’t always cause the obvious symptoms but can make neurological symptoms go nuts so please get tested when you’re at the GPs on Thursday, just in case.
I hope you don’t have to use it, but be prepared with an assertive argument to get the neurology referral. It’s long overdue by the looks of things.
Thank you for the reply and for the kind welcome I think you are right. Come Thurs morning I will ask the GP to check if I have a UTI, though I have no pain, I just need to go LOTS. I will also prepare an argument re a neurology appointment. I don’t know what is wrong with me; I just know that there is something wrong and, after 8 years, I’d like to find out what. Hopefully the GP will be receptive to this.
Just to give you an update - my symptoms are still the same I went to the GP’s today and they have signed me off from work for a further 3 weeks . The GP tested me for a UTI with a dipstick and it came up negative (which is good I suppose) but she said that she would send it off anyway to test for infections. She disagreed that the need to go to the toilet all the time was linked to my other symptoms and instead told me I have an overactive bladder and that I need to:
drink less
cut caffine from my diet completely
not drink anything for at least 2 hours before bed and
look online for a ‘train your bladder’ programme to follow
Apparently I need to ‘treat my bladder like a small child!’ Not quite sure what she meant by that but there we go. She told me not to go everytime I think I need to go; when I asked about possible ‘accidents’ (which have happened in the past - oh the Glamour!) she shrugged and told me to either not wait that long or buy some Tena Lady just in case!
She sent me for some additional blood tests to check my B12 and folate levels, test my tsh levels in case of thyroid issues (my mum, maternal grandmother and maternal great-grandmother all have/had underactive thyroids) and test my glucose levels (for diabetes) but she refuted the need for me to see a neurologist. She feels that due to the family history it is far more likely to be rheumatic than neurological. In one way I am frustrated, but in another I understand that if there is a strong history of rheumatic autoimmune conditions (which there are on both sides) then there is a natural tendency for a Dr to want to go down that route. I just hope that the blood tests show something and I start getting some answers! Sorry to rant but I am so frustrated; this flare up has been going on for a month now and I am really concerned that my body might be doing itself lasting damage. I’m only 27 and this has been going on for 8 years; I can’t contemplate it being like this for the rest of my life without any answers.
