Partner on the verge of a breakdown, not sure what to do...

New diagnosis and before diagnosis
1

My partner had a hepatitis a injection 2 months ago now before our holiday to Egypt.

Two days after the injection she experienced pressure headaches along with dizziness. It was hit and miss whether we were going to go on holiday but after the doctor finally prescribed her some anti-vertigo tablets the symptoms subsided and we flew to Egypt for 10 nights. Whilst away she experienced what appeared to be some kind of allergic reaction, her lips swelled up like you wouldn’t believe for a couple of days. It went after about 6 days of rubbing some zovirax cream in three to four times a day.

When we got back from holiday, about a week after and up until and including now, she has had pressure headaches, blurred vision in the left eye (not as profound as some of the other symptoms), loss of appetite leading to losing over a stone in weight (now just over 8 stone), feeling sick in mornings to the point where she doesnt want breakfast (not like her at all), diarrhea, what seems to her like a very fast and very profound heartbeat, small twitches in certain parts of the body. The main symptoms that have been there everyday since we returned from holiday are tingliness & shakiness feeling (inside the body rather than out - strange).

Since we’ve been back from holiday she has been to the doctors and had blood tests for thyroid checks, amongst other things and the only thing come back that has concerned the doctor is her vitamin b12 levels are a bit low.

She has been in hospital twice (the first time they sent her home after 1 night even though she had numbness down the one side - same side as the blurred vision, only to go back in the next day for 4 nights). She has had a CT and MRI scan that have both come back clear.

She was discharged and referred to a neurologist as an outpatient where she went for an evoked potential test last Friday. We are now awaiting an appointment with the neurologist herself where we will receive the results.

The whole 2 months has been an absolute nightmare. From waking up in the night to find her shaking physically, to unbelievable emotional outbursts almost every single morning and night from the day we returned from holiday, she is very fatigued, unable to focus at work, and near enough every single worknight is taken up by her browsing the internet trying to find whats wrong with her. She genuinely seems like shes on the verge of a nervous breakdown and I feel helpless.

The worst part is she won’t stop looking on the internet and therefore has attributed every single symptom shes had is down to MS, she is 110% sure she has had it even without a diagnosis. To make matters worse, tonight she read that vaginal dryness is a symptom of MS along with lack of sexual drive which shes suffered with for the past 2 years.

She has never been anxious before, not even depressed, she has always been the happiest person i’ve known, it is so hard to see her the way she is and I don’t know what else I can do other than try to assure her it will all be fine. She is adamant she has MS and will end up in a wheelchair at some stage in the future, it seems like her mind is on overdrive and she can’t see any positives going forward.

I’m not looking for answers, I just need someone to talk to about it, especially anyone going through the same thing whether it is MS or not.

2

Forgot to mention, she also believes the hepatitis a injection has brought the virus out which she says is a common cause for an “episode” of MS to appear.

3

She really must stop trying to self-diagnose. Her MRI was clear so showed no lesions, and you have not said that she has had any previous possible symptoms of MS apart from the lack of sexual drive, so whatever this is seems to be linked primarily to the injection/virus itself. You need to wait until your neuro appointment and get some actual facts. I’m no expert but it doesn’t read as though it’s obviously MS tbh, although it sounds like it will be hard to convince her of that.

On top of which, MS is not the end of the world either.

I hope she improves soon and gets some answers.

4

Hi,

I too am not an expert but I have low vitamin B12 levels [158] and was advised by people on here that this can cause many of the symptoms you describe. They were right. Long term low levels can cause neuro problems such as numbness, tingling, heart palpatations, diarrhea and unbelievable fatigue.

Has she been prescribed vitamin B12 injections as these are the best way of restoring the levels as unless she is a vegan [B12 comes from protien] it would be likely that she is not absorbing enough of this. Also what were her heamoglobin levels? Very often B12 deficency is related to pernicious anemia [although not in my case] It is also very important to get these levels back to normal as the longer this is left the more damage is done and full recovery becomes less likely.

This is always worth ruling out whilst waiting for other tests and if this is the cause it is very easily treated.

Good luck with everything

Take care

Helen x

5

Thank you both for your replies.

Zedsee - You are right, it is very hard to convince her of that. It is very hard to convince her of anything at the moment. I have been trying to get her away from using the internet, but with her being in an office job and having a smart phone it’s difficult to stop her. I keep telling her she has to help herself by not looking things up before anyone else can help her as the anxiety will no doubt make things worse than they first appear, but it goes through one ear and out the other!

Helen - She has been taking vitamin supplements over the past 4 weeks but I understand it can take up to 8 weeks before you see any improvement, is this correct? She is due to see the GP tomorrow to try and get some more information, so I will ask about the injections then and see if they can do a b12 check again. She had a full blood count which came back normal so I presume the haemoglobin is normal on that basis?

Although she is only normally around 9 and a half stone, she eats very very well, and we also eat very very healthily. Every day we have plenty of veg and also one meat, whether it is (mainly) chicken, or lamb mince, or salmon.

Last night was the worse she’s been, and again this morning she was awake from 4am onwards with a pounding heart and the shakiness. Each day at work lately I seem to be more exhausted than the last. Hope we get the results from the evoked potential test soon. What are everyones thoughts on those? All I can see on the internet is that they are used to diagnose MS, surely they’re used for other things too?

1 Like
6

Poor her, and poor you! All I can say is, hang on in there and try to be kind and encourage her to pace herself emotionally - it might take a while to get to the bottom of what ails. No use saying leave dr google alone: you know already that such advice is futile! Just try not to let yourself get too wound up by your partner’s fears, however extravagant and premature they might seem to you. You are not going to talk her out of them with sweet reason, or with not-so-sweet good sense. These sort of fears are not usually amenable to rational argument, however eloquently expressed! Just be there and hold her hand. Sometimes just being there and being calm and supportive is absolutely the thing to do, and the only thing you can do. Good luck to you both. I hope the fears melt away like April snow when the doctors find out what is going on. Alison

1 Like
7

Hi

Don’t know a lot about evoked potential tests except they test the nerves so could I suppose be useful for diagnosing or ruling out all types of neurological illness, think it is all part of one giant jigsaw that you have to be patient with

Just on the subject of B12 if her body has stopped absorbing this for whatever reason [ quite common] it is pointless taking supplements or eating the right food [though healthy eating is obviously good] as it will be flushed out of her system. The injections, which are potentially for life, are injections straight into a muscle so there is no need for absorption. A B12 defiency is not uncommon in individuals with MS but needs to be dealt with to see what other sypmtoms remain after treatment. Again that jigsaw sorry.

There are a lot of people on this site who understand the frustration and fear that goes with waiting for a diagnosis could you persuade her to talk on this forum or at least read some of the posts so she knows that she is not alone. I know this doesn’t help but good old anxiety can be responsible for some of the symptoms which is a vicious circle I know. So having a good old moan or sharing fear can help.

Let us know how you are both getting on

Take care

Helen x

8

Hi Alison & Helen,

Thank you for your kind messages.

An update:

Only received a call from the Specialist today to say the evoked potential test results are fine, and she asked my partner whether she still wants to book an appointment. My partner still has all the original symptoms and some are worse than they were to begin with (e.g. originally pins and needles in the arms/legs, developed into numbness - ‘feels like someones sat on my arm all night’ were her words), so she has said yes and we will receive a follow up appointment through the post - perhaps we may even get to speak to the specialist in person this time!

In the meantime, in the past 4 weeks we’ve been to the doctor three times, the first time we explained our fears and expressed concern that all this waiting around for the specialist to get back to us (we were told 7-10 days only for the results to be explained over the phone today - near 5 weeks after it was done!) may be causing permanent damage. The doctor stated that Neurology appointments are like gold dust and can take up to three months before you hear anything!!! He didn’t at all seem concerned, he said that he thinks she’s had a virus, and whilst some viruses start and end within a week or two, this one is the opposite, and could last up to 6 months to feel right. Of course, this suggestion comes after multiple blood tests, stool sample, MRI, CT scans etc, and everything bar the vitamin b12 blood test result has come back fine, so I find myself wondering why he would suggest it to be a virus, would this not show in the different blood tests shes had or stool samples? We suggested b12 injections and he maintained that a count of 85 is not too low (the internet says it should be above 200, so who’s right!?) and so felt there was no need for them.

Anyhow, feeling like we’re not getting any serious help from that doctor, we tried another, who was much more compassionate/concerned, and he suggested vitamin b12 injections as her count was slightly low at 85. He wants her to have three lots, two weeks apart and then another blood test to ensure her levels have gone up as they should, to rule out some other problem where her body isn’t absorbing it correctly. She’s now had two lots so far, after the first, she was feeling more energised for a few days, then quickly went downhill again with the emotional outbursts, and generally feeling quite ill. The second time (this Monday gone) she has been much more focused, less negative, and generally seems a bit better than before, although she’s got a rash on the chest - putting this down to the higher than normal temperatures we’ve been getting recently!

Anyhow, to conclude, we don’t feel like we’re getting enough help, quick enough. As I say, we are concerned that all this waiting around could be causing permanent damage. We will express this to the other doctor when she goes back to have her third and final b12 injection in 2 weeks.

On a more positive note, weekends do seem to be much better than weekdays, and i’ve been trying to keep her more occupied - went down to Borth beach a couple weeks back, best day we’ve had in ages in terms of happiness! It’s her birthday next week and i’ve bought her a new bike, so will maybe try and get out for a ride then. Also been trying to keep her focused on the positive things, future prospects like new house, holiday (first trip down to Cornwall in September).

If she starts to go downhill again, I will suggest she comes on these forums.

1 Like