Please help...symptoms all in my head?

New diagnosis and before diagnosis
1

Hi everyone, I’m new to this forum and I’m in need of advice. (Apologies if language is bad, I’m finding it difficult to form words-thank God for autocorrect!)

I’m a 19 year old female, working and attending university. I have been experiencing symptoms since October 2017.

My symptoms are:

  • Headache
  • Severe arm/leg weakness
  • Tremors
  • Misty vision
  • Urination incontinence
  • Language problems
  • Pins and needles (sometimes feels like cold burning sensation)
  • Severe fatigue
  • Balance/spatial awareness problems
  • Nerve pain all over body

I have been back and forth to GPs, which all suggested my symptoms were migraines; shutting me up with tablets (which didn’t work). In November 2017, I went to A&E due to weakness and severe muscle jerks/pain. Again, they did no tests and said it was migraines. When my symptoms seemed to have decreased in severity, my GP sent me to a neuro. He thought was migraines but wanted to rule out anything with a brain MRI in December. My symptoms flared up again 3 weeks ago and I rang the secretary and she told me today that my neuro doesn’t need to see me again.

I called in sick at work today because my symptoms are so severe (I haven’t had a day off sick in 2 years). I called for an emergency doctors appointment, to which they said it was all in my head and anxiety! She even said my tremors were “intention jerks”. I couldn’t believe it. She made presumptions with my pre existing mental health condition (I’m doing really well with it) and kept asking if I abused alcohol or drugs. She took one look at me and thought I was a teenager with mental health problems and substance abuse issues. I asked if there was anything I could do but she said nothing because there isn’t anything physical causing my symptoms, its all anxiety. Sending me for blood tests in 3 weeks, probably just to shut me up. The most mortifying and humiliating thing that I’ve ever experienced.

I feel so hopeless and I don’t know what to do. I cannot function properly. I can barely walk due to the severe weakness in my legs, and my tremors/jerks are driving me crazy. The nerve pain is never ending and I can’t seem to get rid of the pins and needles. I have been battling for 5 months, but no-one wants anything to do with me. I know it’s not in my head, this is real and I’m experiencing it. I feel like I’ve hit a dead end.

Can anyone suggest anything? I feel like I’m running out of options.

(Sorry for the long winded post)

Thank you

S x

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Hi

I can’t think of anything to help at the moment but I want to get your post up the list. I think you have some genuine concerns and I hope that someone else will come along and give you some advice.

Best wishes,

Anthony

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Hi Anthony, Thanks for your reply. I hope someone can help shed some light on it. Best wishes, S

4

Hey

Sorry to hear you are having a rough time. Sounds like you’re in a terrible pickle.

I noticed that you didn’t mention MS in your post. Although it is obviously on your mind as you have landed in this place, and are obviously concerned enough to post here. To reassure you a bit about MS. It is a mimic, virtually any symptom could be MS, but the reality is that MS is rare and the chances of you having it are slim in comparison with other conditions. What led you here? Did the neuro mention it? Has anyone said anything to reassure you that it isn’t MS? What did the MRI say?

Secondly, don’t worry about the “intention” thing. It doesn’t mean that they think you are “faking” symptoms. It just means that it is a conscious thing. I have MS and have previously had “intention” tremor, this means that I don’t get tremor when Im just sat still but if I reach for something (ie make an intentional movement) my hand shakes.

Thirdly – You’re a student. Me too. I was diagnosed as an undergraduate, completed a masters, and have decided to go back 5 years later do a PHD part time. I have never claimed extenuating circumstances at any stage. This isn’t bragging, but just to highlight that MS can be OK. My MS is relapsing and I have near full recovery in between so for me it’s never affected my work capacity. It’s a spectrum condition if you try to acknowledge that, the context might help. As for the future, carpe diem.

I mention the student thing as ane thing that helped me massively through diagnosis was the university itself. Contact disability support, they will help you. My initial path was similar to yours. I saw my GP, was told I probably had anxiety. I argued for a referral but it took about 9 months to get a neuro appointment, so in the interim I went to disability support. DS gave me counselling (for my anxiety) and I felt loads better just because someone listened and because I also knew they would have my back if it got worse. Similarly when I saw the neuro (my MRI lit up like a Christmas tree, so the rest of my diagnosis process was elementary), I went back to the service and they supported me through it. I didn’t actually need them after that, as my symptoms remitted and I didn’t have another episode until last year (5 years later). I will never forget how much their support meant and I still volunteer with DS at my current uni. There are loads of people who are undiagnosed (with all sorts of things) and very distressed, theyre good at dealing with it.

In terms of what you need to do with your healthcare… I think the question is – do you trust your GP? If you do, go back to them and ask what your diagnosis is – migraine or anxiety, and expect them to give you an answer and treatment, (try to be open minded about treatment). If you don’t trust your GP get a new one (one in a different practise if necessary) and get them to talk you through everything – your neuro report, your diagnosis, your concerns around MS, your recovery, your need for a further referral…. Etc.

Does this help? Not sure it does. Nonetheless, feel free to sound board on here. Most of us have been where you are now.

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5

Trisarahtops, I’m actually quite peeved off on your behalf. Yes you should definitely try and see another doctor if your gp won’t listen to you. It absolutely might not be MS. In fact what it is at this stage is not really the issue. The issue is you are having horrible crappy symptoms and deserve to be feel like you are being listened too. What’s the deal with the neuro saying he doesn’t want to see you again without having a follow appointment. Your mri may have well been normal but you should have been told. Have you received a letter through the post from your neurologist yet? You have my every sympathy and good wishes. I think many of us have been where you are now and it sucks. If you’ve still got some fight in you and I hope you do, fight your very hardest to be heard!! Good luck x

1 Like
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Hi there, Thank you for your response. MS is a concern as a good friend of mine has the illness and she mentioned it in passing. I haven’t researched the illness thoroughly as I don’t want to scare myself or self diagnose. Finding this forum was the only was I could express my concern to other people who experience similar symptoms. As for the MRI, I don’t have a clue what it says. People have told me different things. My neuro’s secretary told me that they were sending out an appointment post scan results a couple of weeks ago…today a different woman told me my neuro doesn’t need to see me again and that they’re sending out a letter (assuming it says it’s all normal). I feel so messed around and not taken seriously. As in the brain MRI was the be all and end all of investigating symptoms and because it’s okay then I’m a hypochondriac. My biggest concern is that, since the severe return of my symptoms (I had the scan 2 months ago) that something could have appeared in this time. I seem to be going round in circles, driving myself crazy. I have seen 4 doctors/nurses who assume migraines. I wish a health professional would take me seriously. Going to try and get an appointment on Monday and speak to a different GP…maybe if I’m persistent they’ll take me seriously. It’s saddening to think I have to convince doctors I’m not well for appropriate investigation. Thanks again for you reply.

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Thanks for your response Cherry Tree. I’m going to try and get another appointment on Monday to see another GP. The doctor I saw today was a Practice Nurse. I’m not sure about the neuro. His secretary told me 2 weeks ago they were sending out an appointment but today another woman from his practice told me that he didn’t need to see me again. So much miscommunication I don’t know what’s going on. Thank you for your response and concern. I’ll post updates if I have any. -S x

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You certainly are getting mixed signals, with being told you were getting an appointment and then that the neuro doesn’t need to see you again. This is not good enough. But you’ll have to wait until you get the neuro’s letter (they are notoriously slow). If you need help understanding its contents I’m sure we can help. If that doesn’t clarify your position then you take other steps. Anthony

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Hey. Hope you are feeling better.

it certainly sounds like good news if you don’t need to see the neuro again. The letter can take forever, particularly if it’s good news so I wouldn’t wait for that. Ask the secretary to get a neurologist to phone you. That’s what I did after both my brain and spine mri scans (I don’t have MS) and I got a call-back the same day. No mention of lesions or demyelination is what you want. Neil x