Forum

Symptoms - someone to talk to

Hi, new to this sort of thing so forgive me if I ramble! Just wanted to explain my symptoms and get any advice as I have a neuro appointment coming up soon and am very nervous and just want an answer now really.

2009 – Extreme fatigue, investigated for sleep apnoea as also snoring – all clear as are blood tests. Lose weight as suggested by ENT and feel a bit better.

2009-2010 suffering from bouts of sleep paralysis, go to the doctors but nothing they can do. This then eases off.

2010 – suffer the most painful and debilitating leg spasm in the top of my right thigh, almost takes my leg out from under me, go to the doctors and get Diclofenac, it twinges for a few days then dissipates. Start to get very tired and physically exhausted, randomly lose hearing in my left ear when I’m eating or have just eaten, go to the docs, more blood tests and ear checks come back fine.

2010 – 2014 – notice pain and discomfort in my legs when standing and get the occasional twinge in the same leg. Go to the doctors and diagnosed with sciatica, given more diclofenac and told to come back in 2 weeks. During the 2 weeks I suffer another huge spasm and go back. Have an x-ray which comes back as very early signs of arthritis, slight curve of the spine and Spina BiffidaOocculta, given co-codamol and more diclofenac, although the is no pain isn’t in my back?

I then started getting twitches in my arms, vibrations between my shoulder blades, legs and buttocks, twitching and cramping in my legs, pins and needles in my hands, bad headaches and auras in my eye (optician also found a spot at the back of my eye), hearing noises and smelling food in my sleep as well as further sleep paralysis episodes. I also get a weird feeling/tightness right deep in my chest and jabbing pains in the sides of my ribs.

I get these symptoms almost every day, not all day, and I don’t have any back pain. Been getting very confused and making silly mistakes at work, I drop things daily and have been feeling very tearful at the slightest thing. I have a neuro appointment in a couple of weeks and although my family know of some of my symptoms I haven’t told them of my suspicions, as I don’t want to worry them if it isn’t diagnosed, this post has been a bit of a relief to this to get it off my chest! I am just exhausted and every day is a struggle.

Thanks for taking time to read my tale, Any advice or other possible diagnosis welcome!

Thanks

Hello and welcome

It is good to share your problems, glad writing them down has helped you a little.

Regarding a diagnosis though. I am afraid you will have to be patient and wait for neuro appointment

It is worrying and stressful I do appreciate that but your symptoms could relate to several causes.

Good luck with the appointment and keep sharing your worries with us. We are great at listening and offering support…no diagnosis though

X

Take a list with you just like you’ve written above. Sounds like you have a lot going on! It might help to prioritise the three most troublesome symptoms as well. Best of luck!

Thanks for listening, and your great advice, going to take my notes with me to the appointment so i don’t forget anything, just hope the consultant is sympathetic!! thanks again x x

Thanks for sharing your journey. I myself am also in similar predicament. Please share how it goes with your appointment, hope all goes well. :slight_smile:

The past two weeks, the internal tremors, shaky hands, tingly/pins and needles feeling on my feet been recurring more frequently. But the past two days, I’ve started to have muscle spasms on my calves, and today it’s been really hard to walk – after brief research on google i came across MS and it brought me to this site. Like you I have been experiencing symptoms since 2009, they seem all disconnected at the time but in retrospect, it seems to fit MS, but also there is a possibility it could be related to something else.

2009 - I had a flu, on my second day right after eating breakfast I started to feel pins and needles on my feet, gets heavier and heavier (since I thought it was caused by poor blood flow) I decided to go back to bed, stretched my legs and continue to rest. However, it just kept worse and the tingly feeling and numbness crawled to my hands and feet upwards, it reached my stomach and I can’t breathe 'cause I’m paralyzed, I can’t move my tongue, I tried to scream for help but all that came out was a murmur… fought real hard to get air into my lungs, thankfully it got better. When I arrived at the ER, i was feeling better and the GP told me it was probably caused by stress.

Thereafter, I had trouble concentrating at work. I became moody and far more pessimistic. I attributed to it to being fed up at my work at the time. My bosses were supportive and I decided to transfer to one position to another, they even promoted me, however the circumstances are the same, even though my work is more interesting enough I still had trouble concentrating, also developed stomach pains which were attributed to acid reflux caused by stress(no concrete evidence, but that’s what the doctors went to), my complete disregard of my diet and health at the time might’ve come to play as well.

2010 - had an accident and may hit the back of my neck, can’t be sure cause I passed out. stomach pain worsens.

2011 - stomach problems continues to worsen. started to get tremors when going to work. freaked me out, company nurse said i was making it up 'cause all the tests I went through came normal. They checked the heart (bradycardia - but they dismissed it, docs said it’s normal for my age). Stomach (acid reflux due to stress). Chest pains (stress). many checkups with different specialists but no concrete answer.

Resigned, took a vacation. When I got another job, the symptoms manifested again worse than before.

2012 - diagnosed with anxiety disorder and depression (suicidal tendencies), tremors and shaky feeling got worse - thought it’s because of the meds side effects so the doc prescribed another to control it.

2013 - resigned on two jobs and declined on other job opportunities, cause everytime I get stressed the symptoms of being shaky and numb worsens - just feeds the anxiety

2014 - work from home, stopped taking anxiety meds. And opted for a more natural approach - healed my depression.

More than a year after, thought I’d get better but every time I get a relapse it gets worse.

Here are some of my symptoms

  • internal tremors, shaky and tingly feeling, happens frequently even in none stressful situations - worsens during stressful situations (could be anxiety disorder),

  • constipation/diarrhea (internal tremors worsens after)

  • lack of sexual drive (could be i’m asexual, idk all I know is I am straight most of my life)

  • loss of balance (mild)

  • recurring headaches (from back neck, ears to forehead (mostly right part))

  • stabbing pains on lower abdominal area (could be tummy problems)

  • trouble swallowing and articulating words (could be because of my teeth alignment)

  • post nasal drip

  • moody, trouble concentrating, memory problems

  • these past two days, muscle spasms on both calves, trouble walking

  • stomach problems/acid reflux

  • sudden red eyes, comes and goes, vision gets bit blurry thereafter (not painful but teary)

  • always cold

  • poor posture

Most of these symptoms are related to MIS, even though it can be attributed to other conditions, I can’t help but think that it’s too much of a coincidence that I experience all this. Could it be MS? Part of me is scared, another part of me is hoping MS could finally explain all the struggles I’ve been through th past years. Any advice would help.

Thanks for taking time to read.

Sorry for the long post,and forgive my English, it’s not my first language.

Hi Josyjo, welcome to the forum. As has already been said, keep a note of your symptoms & take it with you when you next see your neuro, try to keep it brief…for some reason neuros don’t like their patients to arrive with a massive list so treat them with care!

Sorry to say it’ll probably be a long wait for a diagnosis, your symptoms could fit any number of things& only a neuro will be able to work it out.

Keep popping on here, it really does help to chat & everyone has an idea of what you’re going through.

Rosina x

Hi bsquared, your symptoms certainly sound familiar, i hope you and i get some answers soon!! Thanks for the advice Rosina just fear being fobbed off or made to feel like a time waster, but will let you all know how it goes - thanks again everyone x x

Update

Finally had my first neuro appointment today (after 3 times it got canceled) had all good intentions, wrote everything down, but i got so stressed with trying to park and confused with the hospital layout, i just mumbled and fumbled my way through. There was a student present and he did all the reflex testing etc while the consultant sat with her back to it all. Long story short, she thinks i have fibromyalgia but is sending my for a brain scan to rule out anything else. Not sure how i feel, kind of relieved i have some kind of diagnosis but still a bit in limbo, just have wait and see. She gave me some anti depressants for my sleep paralysis but not sure if i want to take them.

josyjo x

hi josyjo

at least the brain scan may show lesions which will help towards a diagnosis.

it annoys me when i hear of a neuro sitting with her back turned - rude!!

meanwhile see your gp frequently to talk about your symptoms - they will then get onto your medical records.

good luck

carole x

Thanks Carole, i thought it was rude and felt like she wasn’t listening, for all i know she could’ve been writing her shopping list! Just a case of waiting, but I’m not so anxious now, and have something to tell my family now x

josy

Well - what a load of hassle! Had my MRI on 2nd April and told the results would be with me in a couple of weeks.

It’s now nearly 10 weeks and I thought I might ring (haven’t done so far as heard various tales of waiting 8 weeks etc.and didn’t want to be too pushy) Was told that the results had been sent to my GP on 13th April!!

Rang the GP ‘oh yes they’re here with a letter that should’ve gone out’ Anyway scan is normal and got a phone catch up with my GP tomorrow - symptoms not gone away and new ones are appearing everyday - I’m not a doctor, and having been told it’s probably fibro by the neuro, I did some research and spoken to a few people with fibro. I maybe wrong but from reading up and what I’ve been told, I’m not sure it is - I don’t have pain like most sufferers experience or been referred to a rheumatologist (which seems to be the procedure) so I am now at a loss!

Asked about the follow up appointment I should’ve heard about (handed a form into reception from the Neuro for this) ‘Oh you should’ve rung up to make the appointment’ wasn’t told that either - now got to wait until the end of August for that!

Back to square one - very frustrated and confused !

Josy