Catch 22

Hello, I had my first neuro appointment this week after nearly a year of strange symptoms but no actual diagnosis. The reason I’m posting on here is because a friend recommended this site and reading previous posts has helped to find the willpower to continue the battle. I was pretending it would all just go away and if I just stopped mentioning it, hid the pain and tried to carry on it would magically disappear. The doctor had no clue what was happening so felt like i got to a point where I was just going round and round in circles. I thought I was coping quite well until family, friends and work colleagues outed me. MS has never been suggested in fact they have never actually put a name to what is happening. It all started with a really bad chest infection that completely wiped the floor with me. I was struggling to get back on my feet and couldn’t understand why I was having problems walking and losing my balance.When I went back to the doctors he said I still possibly have an infection so gave me more antibiotics and told me to rest. Then the constipation started and has continued for nearly a year. Tried all types of medication and diets and found there is nothing physical blocking but still doesn’t want to work. I battle with what seems like daily stomach pain, lower back pain and horrible trapped wind. I get cramps about 40 minutes to an hour after eating. Horrible pain in my hip bones at the moment that just seems it wants to stay for a while. My periods stopped and I was told it might be due to medications and stress on body. After four months of this they eventually sent me for a blood test and found my female hormones were really low. So had three months of repeating bloods, taking me off stomach tablets , putting me back on them and then because it stayed really low they decided I am not allowed to take the contraceptive pill, have injection or implant. My hair started to fall out but not in clumps, in fact I don’t have bald patches just thinning. When I wash it, comb it, run my fingers through my hair , blow drying , in fact anything seems to make it fall out. I have to wait three months for pill to be out my system and then repeat b loods . Pins and needles, trouble with my speech seems to be the new symptoms plus a memory like a sieve. Plus I have continued to catch just about every cold, bug know to man. According to the doctor I have had gastroenteritis twice (sickness no upset stomach) , conjuntivitious , 3 virioises, 2 chest infections, dehydration when I was really struggling with dizzy spells and the basis like walking. This is someone that up until this year couldn’t remember the last time I went to the doctors for anything other than repeat prescription of asthma pumps and the pill. Sorry for ramblings but fast forward to neuro appointment and after the tests she didn’t say whether I passed or failed them. Just said she would send me for MRI and would I have electrode nerve testing. Sorry I can’t remember the name of it. No mention of when just that they would write to me and after I had the tests it would take a few weeks and she will discuss where we go from there. Then she said in the meantime I need to go back to gastro, back to doctors to see what the plan was for hormones and cut my workload by half. I need to stop getting frustrated with myself and speech and stop beating myself up for being Ill. That I am not 100% and I need to acknowledge that. My focus should be on my health not a career. Now here is the huge catch 22. I can’t afford to cut my hours as then it wouldn’t be worth the hour and half commute each way and cost. So I would have to leave a job I love. Then there is the uncertainty of finding another job and being employable with current health problems. I’m a nursery practitioner in an unusual setting so can’t even take it easy as physically demanding job which you are constantly on the go. I wouldn’t get any help as just have a list of symptoms and when people ask what exactly wrong with you i just don’t know what to say. I have put off telling work until MRI but that could be a lengthy wait. Right I’m going back to burying my head in the sand and wishing it would all just go away. Sorry for the very long and rambling post

Hello and welcome

To be honest, what you describe doesn’t sound like MS to me, but there is clearly something going on!

Before you cut back your work hours, I think you need to talk to someone who knows about employment law - you are having to cut back your hours because of medical advice (like an unusual type of sick note) which I’m pretty sure makes things different. Sorry that I don’t know enough to be able to say more than that :frowning: Hopefully someone will be along soon who does and can, however if no one does, then you could try posting in the Everyday Living forum - there are more people with experience on there.

The neuro was spot on btw, you really do need to go back to the gastro and back to your GP to see what the plan is for your hormone levels, but most of all you really MUST stop getting frustrated with yourself and stop beating yourself up for being ill. It is not your fault!

I really hope that the MRI and evoked potentials appointments come through very soon and that you get some answers pronto.

Hang in there!

Karen x