Do I need a new GP? All the symptoms but he doesn't want to listen.

Everyday living
1

Hi
I’m a 30 year old female and have been suffering undiagnosed for years. I would like to share my medical history over the last 7-10 years in the hope of getting some opinions about what’s going on. I’ve had various problems during my 20’s which I have listed below. My GP doesn’t seem concerned but I would like to know what people with MS have to say about the matter in the hope of finding out what I should do next. Any help would be appreciated.
Thanks in advance for any help you are able to give me.
Symptom Tracker
Symptoms I have experienced and consultants I have seen:
• Note that my blood tests have consistently confirmed elevated CRP and white blood cell count over the last couple of years.

Physiotherapist
Symptoms:
• Left knee pain, constant burning sensation in joint and sharp pain when going up and down stairs.
• Knee felt unstable and was prone to giving way.

GP sent me to a physiotherapist. Physiotherapist said my knee caps were very small and could be putting pressure on my joint. This problem appeared to subside but has come back on occasion over the years.

Urologist

Symptoms:

• Lower back and abdominal pain/numbness.
• Urinary frequency.
• Bladder never felt fully emptied.

A couple of years ago I suddenly started getting what appeared to be recurring urine infections. I had back and abdominal pain/numbness and it felt like my bladder was not emptying properly. Urine tests came back negative but my GP initially didn’t investigate it further, he just gave me anti-biotics and told me to drink lots of water. These ‘infections’ tended to come back every few months and still do on occasion. I was sent to a Urologist who had a 5 minute discussion with me about my symptoms, he did not test the urine sample that I was told to take with me and said he didn’t think he could help me. I no longer visit my GP when this happens as it was shrugged off as just being ‘one of those things’. I resigned myself to just having to live with it.

Neurologist
Symptoms:
• Back, shoulder and neck pain. Tense muscles, spine becomes compressed between shoulder blades which increases the pain. Back muscles around shoulder blades spasm. Pain radiates up the neck causing pressure headache.
• Daily headaches of varying severity. Often pressure headaches accompanied by shooting pains in the head. Shooting pains normally experienced when moving.
• Eye pain – eyes feel bruised to move and heavy. Pain behind left eye is worse.
• Migraines – can keep me in bed for days. Left eye pain becomes worse during these attacks and vision can become blurred and sensitive to light. These tend to begin during the night or I notice the eye pain and blurring first thing in the morning and the migraine progresses throughout the day.
• Tingling in pinky, ring and middle fingers and down the outer side of the palm on left hand. Left hand/arm feels weak – once lifted a full dinner plate to hand it to my partner and it suddenly felt so heavy that I almost dropped it. The strength in my arm just seemed to disappear.

GP thought I might have a trapped nerve and referred me to a Neurologist. The first visit to the Neurologist at Ninewells in Dundee consisted of discussing my symptoms and a basic reflex test. The consultant I spoke with was in his training period and was not the consultant named on my appointment card. When he tested the reflexes in my arms (inside the elbow) he was concerned that my left arm reflex was ‘excessive’. He requested a cervical spine MRI without contrast to check for compression or herniated discs. Following the MRI I returned to Ninewells and spoke with the main consultant who said he had looked at the scan and could see no spinal alignment issues which could be causing my symptoms and could therefore not assist me further and referred me back to my GP. My GP just told me to try to manage the pain using painkillers. No further investigation was done and I again resigned myself to being prone to headaches and dismissed this as a possible symptom of anything more serious.

Gastroenterologist

Symptoms:

• Lower left abdominal burning, radiates into left hip and sometimes down left leg.
• Sudden diarrhoea, normally begins during the night.
• Cold sweats.
• Increased heart rate.
• Oesophageal Spasms.
• Felt faint, lightheaded and weak. Legs were shaky and unstable. Balance was off and I fell and banged my head off bathroom wall.
• Tightness in chest/upper abdominal area – was taken to hospital A&E for this on one occasion as my heart rate had increased. A&E consultant monitored my heart rate which had slowed down but could not explain why I had this tight feeling. She was happy to send me home and told me just to keep an eye on things and return if I felt I had to. The tightness lasted for over two weeks before subsiding.

GP suspected possible IBS or UC and referred me to Gastro. Gastro requested a colonoscopy which came back clear. Gastro consultant suggested possible Endometriosis affecting the bowel and referred me back to my GP. GP took me off my contraceptive pill and referred me to Gynae.

Gynaecologist

Symptoms:

• Lower left abdominal burning, radiates into left hip and sometimes down left leg.
• Sudden diarrhoea, normally began during the night.
• Cold sweats.
• Increased heart rate.
• Felt faint, lightheaded and weak. Legs were shaky and unstable. Balance was off and I fell and banged my head off bathroom wall.
• Tightness in chest/upper abdominal area.
• Extremely heavy and painful periods.

Gynae was unconvinced I had Endometriosis as he noted that I had been on various contraceptive pills and the injection and had not had a period over the last 10+ years. He advised the heavy/painful periods were most likely due to me coming off my contraception and the length of time which had passed since I last had a period. He requested an internal ultra-sound which came back clear. He advised me he did not think Gynae could help me any further. I became quite distressed at this point as I felt that yet again I was going to be back at square one. He noticed my distress and after discussing all of the symptoms I had experienced he was concerned that they could be as a result of one illness rather than several different ailments. When I asked what he was suggesting he mentioned the possibility of Multiple Sclerosis or a syndrome which mirrors the symptoms of MS. He strongly highlighted that this was not his area of expertise and was careful not to alarm me with this suggestion but encouraged me to discuss this possibility further with my GP.

I spoke with my GP that afternoon and he immediately dismissed the possibility of MS as he said my symptoms do reflect the normal MS pattern. He said MS does not cause bladder or bowel issues and that I have already had an MRI which came back clear. He felt the Gynae was irresponsible for telling me this. He requested that I have more blood tests done and an eye test at my local optician but he does not feel that taking the MS route of diagnosis would be required in this case. He feels it would be better to refer me to a pain clinic to learn how to manage my pain.

Other symptoms experienced alongside the above:

Fatigue – comes and goes. Have noticed that a hot bath makes it worse and I regularly fall asleep in the bath. I have no energy immediately after taking a hot bath or shower. Some days I find it unbearable to lift my head off the pillow. I have noticed that when I am this exhausted I find it difficult to function and have decreased concentration. Mentally drained. Can stare into space for long periods of time before it registers and I give myself a shake. I can also feel dizzy which I put down to tiredness.
Eye twitching – I have recently noticed that the area around my left eye twitches frequently for days on end and then disappears.
Itching – I have noticed on several occasions over the last 6 months that my skin suddenly becomes itchy for no reason. This can affect my entire body. I will have just finished scratching my leg when my scalp becomes itchy, then my arm, body etc. This tends to happen later in the evening, at bedtime or during the night.

2

Welcome to this forum,

Many of the symptoms you have/had do relate to ms but other illnesses have similar symptoms as well. If I were you I would load yourself up with the list you have put on here and get yourself booked in for a second opinion from another GP. Is there another GP at your practice you could see? You have every right to change your registered doctor and you don’t have to give a reason for dong so (just incase you’re worried of offending your GP) It’s not safe to self diagnose by other people’s symptoms, you need a professional opinion for your healths sake.

Good luck,

Sue

3

Hi there,

I had similiar problems with my GP, he was not taking me seriously, he did not believe that I had problems. I spoke to him and said that I would change my GP unless I was taken seriously. He then referred me to physio, and and sent me for x-rays. When the x-rays came back ok…he basically sent me away and said come back again in a few Months, there is nothing I can do for you.

I then changed my GP, I asked to be sent to a neurologist, which I was, I’ve had tests, and have to see him again in Nov. but I still get the impression that this new GP doesn’t believe me either.

The only person that shows any interest in my symptoms is my consultant for UC, who is referring me back to rheum. I feel like I’m being passed around all over the place!

I do feel that GP’s tend to think that ‘its all in our head’ as my GP has said to me that he has dozens of patients that come in every day with symptoms the same as me…and?.. I just want to be believed.

I wish you luck.

Wendy.

4

Hi brycepudding You have had excellent advice from Sue and Wendy so I do not think I can add too much to that. I was concerned that you may have untreated UTIs though. It is really not a good idea to leave a urine infection as you could end up in hospital with a nasty kidney infection and be very poorly. Please make sure you see someone about it if you think you have one. I have had numerous UTIs and they make me feel dreadful! Teresa xx

5

Hi Brycepudding,

I think one thing that can go wrong on the NHS is that every visit to the doctor is treated as a separate, self-contained incident, with no-one looking at the big picture.

Thus, before being diagnosed with MS, I’d had knee and foot ultrasounds, pelvic ultrasound, rheumatology screening, to name just a few!

All of these investigations were probably appropriate, for each symptom taken alone. But what failed to happen was for anyone to look at the totality of symptoms, going back years, and spot that there was a pattern of unexplained incidents, that could have a common cause, rather than a random collection of one-offs.

And I’m guessing this is what’s happened to you too. Every time you go to the doctor’s about something, you get a response that is appropriate, in context, FOR THAT THING, but nobody’s joining the dots. I don’t think doctors have time to read the notes to see what else you’ve been in about for the past X number of years, and they see so many patients, they’re not going to remember, either. So each time is like you’ve never been before, and they just look at what the problem is NOW.

I’m sure it’s not intentional: most patients won’t have a chronic undiagnosed condition, that manifests itself in a lot of different ways, so it would be a complete waste of time to go through their whole file, on every single visit. But for a few of us, linking those seemingly random incidents might have been the clue to an earlier diagnosis.

So I think seeing a different doctor is certainly something to consider. But maybe all it needs is to consolidate your symptom history with your present doctor. Without necessarily raising the spectre of MS again, since that didn’t go down too well, it may be worth pointing out that you feel you’ve had a history of unexplained, or only partially explained symptoms, going back some years, and you wonder if this is sheer coincidence, or might suggest something.

You do seem to have had a lot of odd happenings, for just one person, and to have been passed from pillar to post, but of course, none of this means it IS MS. You may have been unlucky, and really did have a number of unconnected things wrong.

Elevated CRP is NOT usually a sig of MS, by the way. It’s an inflammatory marker, and does mean “something” is going on, but it’s a pretty non-specific test, so the “something” could range from the trivial to the serious. CNS inflammation (as with MS) does not typically cause raised inflammatory markers in the blood, which is one way of distinguishing it from more generalised inflammatory conditions - e.g. rheumatology spectrum.

Tina

6

Hi

Teresa gave you some good advice about untreated UTI’s so that is something you need to get sorted even before anything else. Please don’t ignore this advice.Tina was quite right in saying that a few of your symptoms dont necessarily relate to ms so maybe something else is going on. I agree with Tina about consolidating your history, as you have written it on this forum and going back to you GP and saying ‘does this history bring up any red flags?’ Then, if he chooses to ignore it, seek a second opinion. Many people have lived in limboland on this forum, myself included until I was diagnosed, its a fact of life unfortunately but if your symptoms relate to something else then the sooner it’s sorted the better whatever it may be.

Good luck

Suex

7

I have to say that I think your GP is right in that what you’ve described doesn’t sound typical of MS. This doesn’t mean that it couldn’t be MS, but it does sound pretty unlikely from what you’ve said. So, just a suggestion, but if I were you, I would first ask to see a specialist about my headaches and migraine. Migraine can cause loads of neurological symptoms (even in the absence of headache) and could explain many of your problems. The added benefit is that because migraine is a neurological condition, the person you would see about it is a neurologist - who should be able to recognise the signs of any other neurological thing that might be going on too. Getting your headaches and migraine under control will also allow you to properly assess what symptoms are extra, and therefore possibly related to a second condition. [Btw, it’s ridiculous to be managing frequent migraine with painkillers. You should almost certainly be on a preventative med.]

It would also be worthwhile seeing an ophthalmologist about your eye pain. Eye pain is very common in migraine, but any sign of optic neuritis (for example) would make a difference to your GP’s attitude for sure.

Ultimately, we need to have faith in our GPs. If you don’t, then you should find a new one.

Good luck with it all. I hope you get some answers soon.

Karen x