Forum

Symptomatic but no-one wants to help

Slightly nervous about posting and I know no-one can give me any answers but I’d appreciate some advice.

Had a range of symptoms which started in June - tingling all over, fatigue, headaches, muscle aches, balance issues (feel like I’m on a boat constantly) burning pain in feet and back occasionally. I’ve had 2 thorough Neuro exams with no abnormal findings and an MRI which I was told was normal but I’ve since learnt that there was an abnormal shaped lesion however,nothing on the radiology report to state that it was MS related. Being completely honest, it’s only me who has thought MS. No doctor has mentioned it. My symptoms apparently have happened too quickly and are too global to be MS - I don’t know if that makes sense.Obviously, I don’t want a diagnosis of MS, but I just want to know what’s wrong with me :0(

I still have all these symptoms and just feel like no-one wants to help :0( My Neuro has discharged me and my GP thinks I’m a pest and there’s nothing wrong with me. Prior to this bout of symptoms my last visit to my GP was in 2008 so I’m hardly a hypochondriac. I just know I’m not ‘right’ - has anyone got any ideas of what to do next??

Keep pestering your GP. Mine has spent the last 2 years telling me my symptoms were all in my mind. Got dx this morning - PPMS. Part of me wants to ring her up and say, “Told you”!!! Good luck.

I’m not an expert but it’s usually uncommon to get so many different symptoms and so many different areas of the body affected at once (unless you’ve had MS for many years and the areas affected have built up). This is probably why the neuro has discharged you specially with a relatively clear MRI. I doesn’t mean you don’t have symptoms or they’re make believe, but there are many other things that could give rise to your symptoms such as vitamin deficiencies, thyroid, lupus, arthritis etc etc.

I would be going back to your GP and ensuring they have ruled all these other things out. It would be a shame to be worried about having MS if your condition was treatable. Take a list of your symptoms and express your worry that they haven’t gone. Don’t suggest a diagnosis as the GP hate people self diagnosing. The other thing that’s at the back of mind, and please remember I’m not a medical professional so only going by instinct, but the fact you have headaches does also make me query whether it’s migraine related. Migraine’s can occur with or without pain and can cause neurological symptoms. It’s also possible for them to last a long duration or occur back to back. Migraine’s can also cause non-specific lesions on your MRI scan.

All I’m saying is keep an open mind on diagnosis, but don’t give up trying to find an answer. If your current GP is unwilling to listen change GP’s.

Good luck. Hope you manage to get some answers.

Reemz

X

Thank you so much for replying. It really is appreciated.

I think a change of GP is definitely necessary. I just feel like my current GP feels like I’m a stressed out neurotic and has mentioned anxiety. I’m anxious now because of the symptoms I have, which is probably not helping but I don’t believe the anxiety has caused the symptoms.

I will go back and take a list of everything - I suggested having my B12 tested and my Thyroid retested to my doctor as my bloods were last done in August but I was told this was unnecessary. I was also told that doctors don’t have all the answers which was really helpful!!! Sometimes the medical profession have a really poor bedside manner - it can be pretty soul destroying!!! :0(

Hello and welcome :slight_smile:

I’ve just a couple of things to add to Reemz’s reply. The first one is that, if you can post a copy of the radiologist’s report, I can tell you what it means (it might put your mind at rest). Secondly, if you had your vit B12 tested after the symptoms began and it was at least mid-high normal, then it’s unlikely to be that. However, it could be any number of other things, so getting as many vitamin and minerals as the GP can think of(!) tested will help to rule out something that you can fix relatively easily.

Do get the migraine thing checked out, and insist on some help with your symptoms, e.g. you do not need a diagnosis to get help with balance (neurophysio is excellent for some people) and meds for sensory problems (e.g. amitriptyline). Neuropathic painkillers, like amitriptyline, can be used as migraine preventatives too - so it might help with your headaches too.

A final thought: if you haven’t already been checked for it and you have a history of blood clots and/or miscarriage/pregnancy problems then ask about Hughes Syndrome (aka antiphospholipid syndrome or sticky blood syndrome). It can cause symptoms very similar to MS, but always(?) with headaches.

Karen x

Thank you for the welcome and the reply Karen.

I don’t actually have a copy of the Radiologists report. I’m back at the doctors to see a new GP next Friday and so will ask for a copy then. All I remember is that it said there was an irregular shaped lesion but I can’t remember the location of it. It also said that the results were inconclusive. I don’t know whether this is correct but if the lesion had looked like it was to do with MS would the radiologist have reported this/ I know that it also said I had a small brain (I was gutted about that!) and there wasn’t any reason given for the lesion!

I had my B12 checked just after the symptoms began and they were 274. I’m not sure if this would be in the mid high normal range. I’ve read different things about B12 and it’s quite conflicting.I should also add that I’ve put on a stone and a half since the symptoms began - never had a problem with my weight so this has been pretty tough to deal with and it doesn’t seem to be shifting no matter how much I diet!

Any further information that you could give me would be greatly appreciated.

Have you had your thyroid checked? An under-active thyroid can cause weight gain.

I think 274 is OK for B12, but I’m not an expert. I understand that the lab test is not wholly reliable and that more in depth tests of B12 metabolites can show up deficits better, but you would have to ask your GP about it.

Don’t worry about the size of your brain - I’ve seen big ones on some really stupid people!!! It’s all about quality, not quantity :slight_smile:

Kx

Well, I’m a believer that great things come in small packages so I guess I have lots of info in my little brain!

I think my B12 is okay from what I’ve read, it’s at the lowish end of the normal range but I don’t think it’s causing all these issues…However, I may begin taking a supplement to see if there is any improvement.

I think I’m also going to insist on having my Thyroid checked as apart from the tingling, my symptoms fit that pattern well. I think they were checked back in the summer but no harm in seeing where they are now.

As soon as I get a copy of my Radiology report I will post it Karen. Thank you again for your advice.

Hi again everyone.

Well, a much more positive visit with my new GP yesterday - who actually listened and talked some sense.

He seemed to have a very thorough understanding of MS and said that it attacks your body like ‘paint splats’ - a bit here and a bit there, so for me to have pain all over and for there to be no real difference on either side of my body would be highly unusual.

He seems to think it sounds more like Fibromyalgia but some of my other symptoms sounded like Hypothydroidism - so he’s given me amitryptyline which I can take between 1 and 3 tablets of per day and I’m having a blood test for my Thyroid. I have to take the tablets for a month and then go back and see him. He said that there is other medication I can take if these tablets don’t work for me - but they are 4 times as expensive so wanted to try me on these first! (at least he’s honest!)

So all in all, feeling a little happier as I feel that I haven’t been fobbed off with the ‘you have stress, it’s all in your head’ nonsense. To anyone out there who is struggling with their current GP - change if you are not getting anywhere!!!

Don’t start taking too much amitriptyline straight off. It is usually best to start with a small dose in the evening and see how it goes. (Amitriptyline can make people very drowsy, so it’s usually better to take it in the evening.)

Most people are advised to build doses slowly (e.g. stay on one pill a day for a week then, if needed, go up to two a day for another week, etc.). This helps to minimise side effects.

I hope it works - and I’m glad you got a decent GP this time!

Karen x

Ugh!!! It’s not pleasant is it???

I thought I was tired before I began taking it but it’s basically knocked me out for 12 hours at a time over the weekend and I’m only taking 1 tablet - not sure that this is right for me as I need to be relatively alert for work - do I persevere? Does it get better?

Any help or advice would be appreciated as I’m new to this!!

x

Try half a pill instead and take it a bit earlier in the evening so it’s worn off by the morning?

Speak to your GP if you are having no joy.

Kx

Thanks Karen - Will try that tonight!! :0) X