Unsure how to tackle discussion

New diagnosis and before diagnosis
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Hi, this is my first post on the site.

I guess I’m posting because I’m nervous about going to my GP. I’ve struggled with significant on/off depression since 2016, and have found when I attend the GP for medical problems, like ongoing lower back pain, I often feel my symptoms are not taken seriously, and there is a hint or suggestion that it could have a psychological basis.

I have multiple symptoms, many that started over 7 years ago, that come and go to a lesser or greater degree, many of which I have never spoken to my GP about, and I’ve even begun to question my own sanity, but the last year, I have noticed certain symptoms getting worse and new symptoms developing, and am not sure whether or not to book a GP appointment, as I really do not like going.

The history is quite complex, but I will attempt to give you a brief outline of my symptoms: around 7 years ago, I started noticing I was from time to time beginning to feel a deep ache around my lower chest in the area of the diaphragm, when lying in bed for several hours. This was uncomfortable enough to wake me at times. I still get this from time to time, but can go for extended periods not feeling this. I do also regularly experience sharp stabbing pains in the sides of my ribs sometimes when stretching and twisting my body. I have also gone on to notice I regularly take big intake of breathes that are not part of the normal breathing pattern, and sometimes feel I struggle to get enough oxygen into my lungs. I also sometimes struggle to swallow certain things, and go to the toilet.

I then started to develop discomfort around my right piriformis area, when sometimes lying and sitting. This also often wakes me.

Around 5-6 years ago I began noticing a considerable deterioration in my close up vision, and I also experienced a droopy left eyelid, which was noticeable when we were going on holiday, to the extent that I was pushed through the airport in a wheelchair because of its impact on my sight, but also my mobility was not great, as I felt quite unbalanced. I did see my GP who referred me to a neurologist, but when I eventually saw them, the symptoms had virtually resolved, although my left eyelid still feels a little heavy to this day, and I find gets worse at different times, and particularly if I am tired or trying to read for extended periods. I also have achey eyes and see double when looking towards the side.

I have gradually begun to notice I feel a little unbalanced, and a little weak in my arms. My writing is deteriorating and particularly after writing for a few minutes.

Around 2021, I began to notice I was experiencing regular lower back pain, which is often worse when standing for any length of time, and then began to notice restless legs when resting with my legs up. I also started to develop leg cramps more regularly and a feeling of tightness and difficulty walking after resting or sleeping. This also tied in with pain in my feet, which was bad enough to prevent me from continuing to walk regular long walks. I noticed this get worse around 15 months ago, when I was having to walk my dogs more frequently. I had also begun to notice tingling and numb sensation in my toes around two years ago.

Around three years ago, I experienced a serious headache across one of my eyes towards the side of my head, which resulted in me being taken to hospital. I had an ultrasound scan which showed nothing, and then a lumbar puncture, and was told I had a slightly elevated level of protein, but the headache was diagnosed as a migraine. I had another three over a two week period, which were excruciating and each lasted about 6 hours, but have completely resolved with no further issues currently. I do from time to time have normal type headaches.

Throughout the last 3-4 years, I have struggled with episodes of fatigue, to the point I struggle hugely at times to stay awake driving home from work, and have to pull over. I’ve even felt like this sometimes driving to work. I’ve also fallen asleep in the cinema and theatre, watching something I was really enjoying.

This year I have begun to notice the pins and needles in my feet, worse on the right, are increasing, and a couple of months ago I began to notice I was having pins and needles in my right arm, hand and fingers. I have also begun to notice about 6 months ago that I had a ridge on the inside of my right cheek where I was obviously gnawing whilst sleeping, and I’ve also noticed on a couple of occasions, some muscle twitching in my right let, and a tremor in my right thumb when it was held in one position. My hands have also begun to feel uncomfortable holding onto a steering wheel, with a slight burning sensation.

I’ve also noticed that I am catching the front of my right shoe on the floor from time to time as I’m walking, and when out one evening a few months ago, I caught my foot on a step in a car park, and fell forwards. Fortunately I was only slightly bruised.

Around a week ago, I arrived home feeling mentally very low, extremely fatigued and just not feeling right. I woke up the next morning with a wound inside my right cheek from biting it in my sleep and a very uncomfortable band like pain across my chest, which I had not experienced for several months. I have had several episodes of twitching since, and have been struggling more with back pain, pins and needles, stiff legs after rest and fatigue. My left eye has also felt heavier and more tired. These symptoms are gradually improving, but I guess the fatigue and low mood has made me feel I should speak with my GP.

Apologies for my long post, but I worry that all of these symptoms might make me sound neurotic, and not be taken seriously. I am questioning myself over and over, and don’t want to waste the time of a busy Gp or Neuro team.

Can anyone advise what they would do in my position, and what they might say to the GP? This has been going on for so many years, and I’ve not been recording relapses and a timeline, so I am finding it hard to remember times when I could be experiencing a relapse. I am unsure what I may be experiencing, and it may sound to many, nothing like MS symptoms, but the impact it is having is becoming a challenge. I am 60 this year, so have questioned if this is just part of my aging.

Many thanks in advance

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Oh dear, you’ve been having a difficult time. It can be hard to advocate for yourself when you fear being fobbed off for some pre-existing condition.

In your shoes I would start a headline symptom diary in three columns - symptom, approx date and frequency/severity. Then back-fit what you’ve told us into similar format as best you can. You’re looking for something that a busy doctor can scan down in a flash. Just the bare headlines are what you’re after, I would say, given that it’s a long list.

Something else I would do if you haven’t done it already is go to your optician and get my eye health thoroughly checked, explaining to them that you’re worried that something neurological might be is going on.

As for the GP, well I think you need to book a long appointment, take a deep breath and go in armed with your list.

For what it’s worth, your experiences do not sound much like mine - my MS tends to have relapses that are fewer but more defined and with clear trajectories and timescales developing and resolving (or not) over weeks or months. But my narrow personal experience is all I have to go on and I have no broader expertise at all.

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Hi Alison.

Thanks for your response. It has put my mind at rest somewhat. It might be I need my bloods taken, to see if I have a vitamin deficiency.

I will write out a list of my symptoms and dates/timeline etc, and go through it quickly with my GP. It might be that I am having issues with my sleep that are increasing my fatigue. You have given me confidence it is probably not MS now, which makes me feel a bit better.

Kind regards,

Ali

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It sounds like you’ve been carrying a lot of uncertainty for a long time, and I can understand why you would be nervous about going back to your GP. Having multiple symptoms that come and go can make it difficult to explain everything, especially when you’re worried about not being taken seriously.

If I were in your position, I would make an appointment and take a written summary with you rather than trying to remember everything during the consultation. Your timeline is actually very useful because it shows which symptoms are longstanding and which ones have changed or appeared more recently.

I’d also mention the symptoms that are affecting your day-to-day safety, particularly the episodes of extreme fatigue while driving, changes in walking, falls, increasing pins and needles, weakness, vision changes and the newer symptoms affecting your arm and hand. You don’t need to decide yourself whether these are MS, another neurological condition, or something else. That is what the GP and, if appropriate, neurology team are there to investigate.

It may also help to keep a simple symptom diary from now on, noting the date, symptom, how long it lasted, and whether anything seemed to make it better or worse. That could make future appointments much easier.

Most importantly, I wouldn’t dismiss everything as simply getting older or assume you’re being neurotic. There are many possible explanations for neurological-type symptoms, and getting properly assessed is worthwhile.

I hope you get a GP appointment where you feel listened to and can go through the history properly. If mobility and maintaining independence are becoming more difficult, you may also find practical information about Mobility Support from Serene Soul Care useful.