Forum

Undiagnosed...keep coming back to MS

36, female

It’s hard to say when it started but in the past year I have spent a lot of time feeling like a hypochondriac.
When I was pregnant with my second baby I experienced my first migraine with an aura (twinkly lights) which was obviously quite worrying as I’d never had one before. Had another during pregnancy but didn’t think much of it.

When my son was about 13 months I got a headache/migraine that was coupled with tingling in various locations, dizziness, clumsiness, and a spaced out/brain fog feeling. I went to the GP who eventually sent me for an MRI which came back ‘normal’ and nothing more was said about it and the symptoms seemed to resolve. I breastfed until my son was 15 months so I kind of put those symptoms down to my body readjusting hormonally and also getting new glasses.

Since June-July I then started getting bloating, pelvic pain and diarrhoea. The bloating is infrequent but the pelvic pain has been chronic since then with the odd few days or weeks of easing. I am awaiting a second pelvic ultrasound (first one came back with a slightly enlarged right ovary) and abdominal ultrasound. I also recently had the CA125 blood test which came back normal. Obviously those symptoms have got me thinking ovarian or bowel cancer.

In between June and nowI had what I can only describe as heart attack like symptoms; chest pain, palpitations. But the ecg showed nothing. I actually had something very similar in Dec 2014 and went to hospital with the same result of no explanation or further investigation.

In the last few days though I have been having the brain fog feeling with the tingling (mainly in the legs when sitting) which has brought my mind back to MS. Strangely the pelvic pain has eased. It seems to be one thing or another which I why I feel like a hypochondriac!!

I have obviously retaken to Googling possible causes of tingling and I came across restless leg syndrome and thought, okay, I could live with that, but then some more googling told me that people with MS are 5 times more likely to have restless leg syndrome.

Obviously no one wants to be diagnosed with a lifelong disease but I’m really starting to not trust my body, or rather the sensations I think I’m feeling. From what I’ve read about MS it’s very difficult to diagnose and can take many years. As none of my symptoms (pain, tingling, brain fog) present themselves physically for people to see I do end up feeling like I’m just making them up.

I have recently restarted taking the mini-pill as I’ve noticed an association with my periods and headaches. Hoping it’s a miracle pill and solves the other issues too. Also taking a multivitamin since some vitamin deficiencies can lead to tingling and I am a vegetarian so probably don’t get enough of some vitamins and minerals.

I don’t really know what kind of responses I’m hoping for…I guess someone who has gone or is going through something similar. Also, is the pelvic pain, diarrhoea, chest pain, a sign of MS?

I don’t really feel like I can talk to my husband about these things anymore. I don’t want to worry him, but also he has been through many different things with me that have resulted in no explanation which makes him very sceptical. I have a second ultrasound for the pelvic pain next week and an appointment with a gastroenterologist in March but I’m starting to think maybe I should be seeing a neurologist instead. I hate going to the GP though as I’m sure they think I’m crazy.

Being trapped in your own thoughts is a very lonely place.

Well it sounds like your GP is very through with follow up investigations, so I guess you will eventually get to the bottom of things. I’ve suffered with migraines for 20 years, in my case they cause the spaced out and tingling feelings you describe, the bad one sided headache and when particularly severe vomiting.I have only recently been diagnosed with ms and the trigger for the ms investigations was optic neuritis, which coincidently lead me to have my first brain mri. No one on here can diagnosis whatever you may or may not have, but as I said earlier it sounds like your GP is very through. Good luck with all the investigations.

For what it’s worth, there is almost nothing in your description that chimes with my personal experience of having had MS for 18 years. Tingling, sure, but that is such a common symptom of so many other things that it seems barely worth considering serious causes when there are so many non-serious alternatives to choose from.

Almost all symptoms make Dr Google think automatically of MS, as you know. But things like palpitations and pelvic pain are among the very few symptoms that probably don’t! These are my uneducated personal opinions, you’ll understand.

It is good that your GP is clearly as keen as you to get to the bottom of your health troubles. I hope that things improve for you soon.

Alison

Thank you very much for your replies. I honestly appreciate them.

1 Like

As it’s been awhile and things haven’t resolved I thought I would post an update…

Since restarting the mini pill my pelvic pain seems to have resolved. I saw a gastroenterologist who said it was most likely ibs which can be hormonally linked so yay for that.

However, the tingling, twitching, odd sensations etc have carried on more days than it hasn’t. I went back to the GP with the headache, tingling, brain fog issues and she said it was down to migraines and prescribed amytriptyline. After reading up on the drug though I decided against taking it as it apparently makes you very drowsy and I have a 2 year old who wakes up at 5am. I had a lovely few weeks with very little tingling but last week I got the chest pain again. Went to A&E and subsequently for further tests (ECG, bloods and x-ray) and none have showed any heart related issues. Waiting on an appointment for an echocardiogram to further assess those symptoms.

The tingling and twitching have also returned so I’m wondering if it’s related. My left hand has also felt a bit odd the last month or so, like less dexterous than usual.

Still feel crazy. Don’t know how much to pester the Dr’s. Feel like I’m wasting their time :frowning:

Hello

To start with, if you have new or resumed symptoms, then seeing your GP isn’t wasting their time. It’s a worrying time for you, having these varied symptoms and assorted tests which in themselves are stressful.

And having a small child is itself worrying because you think about what happens if you have X,Y or Z.

If your tingling and twitching have come back, it’s worth giving the Amitriptyline a go. Yes a potential side effect is drowsiness the following day, but you can mitigate this by taking the Amitriptyline early enough in the evening. The usual advice is take it by 8pm. This is usually deemed to be early enough that the dopiness has done its job overnight and the drug has left your system by the time you get up. However, if you’re getting up at 5am, try taking it by 6pm and see if it helps. In general, people start of with a low dose of 10mg for neuropathic pain. As you get used to the drug, you can increase the dose.

But whatever you decide to do, bother your GPs again. Take a list of all your symptoms along with the rough dates when symptoms began and subsided. Ask again for a referral to a neurologist. Since you saw a neurologist before, there is a history behind you, which will be helpful to compare old with new test results.

Best of luck.

Sue

Thank you very much for your reply Sue.

I haven’t actually seen a neurologist. I had an MRI and was told by my GP it was okay and nothing more was said, although I’m guessing a neurologist looked at the MRI results?

Keep in your mind that a GP isn’t qualified to either diagnose nor not diagnose MS. Supposing you do have MS, you need to be referred to a neurologist. Not that your symptoms sound like they are or aren’t MS.

Just that if you have problems that seem to be related to the nerves, then being referred to a neurologist would be the most useful thing for you.

So, in your situation, I’d be seeing the GP, explaining all the neurological type symptoms and asking for a referral to a neurologist.

Sue

Thank you again Sue.

In regards to the amytriptyline in relation to MS - what is it used for? If I do have MS, would it potentially mask symptoms?

No problem.

In higher doses (150mg+) it’s an antidepressant. But one that I think would be really hard to function on.

In small doses, neuropathic pain (10mg to about 50ish or a bit more). The kind of neuropathic pain that includes burning, pin and needles, prickling, that sort of thing.

I take it at night (by 8pm) for burning and prickling type pain in my legs and feet. I’m on about 40mg per day (night). But I’ve come up to that dose over years. Initially I was taking it last thing at night and experienced ‘hangover’ type feelings in the morning. My rehab doctor (who is my guru when it comes to drugs) suggested I take it much earlier in the evening. He said it can take a while to work, so when you really need it (when I’m trying to sleep) you’ve taken it early enough for it to work. But that it takes a few hours to wear off, so by the morning it’s worn off. And would you believe it - he was absolutely right.

So if you were to take 10mg in the early evening, it would have several hours to start working before bed, then have worn off by the time your 2 year old is awake and demanding attention. This size of dose wouldn’t make you too dopey to wake up in the night if needed (by said 2 year old say).

Hope this helps.

Sue

Thank you again Sue.

Yes I was prescribed 10mg/day.

I was just thinking that if I do have MS and this drug masks some of the symptoms would that not be a counterproductive treatment insomuch as it takes longer to get diagnosed and delays other treatments?

Sorry, I missed that part of your question. No the drug won’t mask anything. In particular since you’d take the Amitriptyline at night and it would have left your system by the time you had an appointment. But even if the drug was in your system, it wouldn’t mask anything neurological.

The neurological exam would be looking at your reflexes, your reactions to stimuli, balance, and all the other tests to ascertain whether your reactions are ‘normal’ or have the characteristics of a neurological disorder. So it would have to be an elephant tranquilliser to mask all of your reactions!!

Sue

Thanks again Sue.

I’m now wondering why the GP prescribed it for migraines if it only works at night as I didn’t tell her it was affecting my sleep…?

It’s not that Amitriptyline only works at night, it’s just that it’s better to take it overnight because of feeling dopey when you (especially at first) take it during the day.

Maybe the GP thought she was prescribing it for your tingling, not for migraine?

Sue

Hi, I’m jumping into your question quite late. I haven’t been here for a few weeks. I am awaiting an MRI in a week. A friend came to me today in church and told me about her brother in law who has just been diagnosed with Coeliac disease after presenting with purely neurological symptoms including numbness and tingling. This caused me to go onto the Coeliac disease website for a look. It seems some people with gluten sensitivity do not experience the usual round of gastrointestinal symptoms but, instead, experience damage to the brain and nerves cause by gluten. You might want to have a look yourself especially since you have also had some gastrointestinal symptoms. Sometimes the damage done to the brain can show up on an MRI. I’m waiting to see what my results are but I will be talking to my neurologist about the possibility I have an issue with gluten especially considering I had severe iron anaemia (another coeliac disease marker) when my neurological symptoms began.

Neither my GP nor my neurologist mentioned the possibility of Coeliac disease. The neuro even commented on my rock botttom ferritin level when he looked back at my blood test results. It seems to be a little considered diagnosis by neurologists.

Might be worth you doing some research and having a word with your GP about it.

Helen

Just remember that if you suspect you may have coeliac disease, don’t stop eating gluten. It completely skews the diagnostic test if there’s no gluten to upset your digestion.

I’d also suggest that it’s extremely unusual to be coeliac and have absolutely no gastrointestinal discomfort. The problem with the gluten is that ones stomach cannot cope with it. Although as you’ve pointed out Helen, it can also lead to neurological and psychological effects.

Sue

Thanks Sue. I’m not sure it’s as rare as we might think.

Interesting interview here:

https://www.coeliac.org.uk/campaigns-and-research/current-research/a-study-of-cognitive-dysfunction-in-coeliac-disease-and-the/neurological-impairment-in-coeliac-disease-and-non-coeliac/

with a Professor of Neurology at Sheffield Teaching Hospitals.

Helen

Thank you very much Helen.

The Gastro actually ruled out coeliac disease as apparently they tested for it. And since I restarted the mini-pill I haven’t had any significant ongoing pelvic pain so I doubt it’s down to that. Very interesting though.

What is your status? If undiagnosed what symptoms have you had?