To think I’m dying? Any doctors around? 🙏

[Garret]

Got worse over a couple of weeks. Tiredness. Squishy tummy and no appetite. Aches and pains. Buzzing sensations all over. Back and neck pain. Joints hurting and clicking. Muscles twitching and hurting. Feeling wobbly. Now struggling to walk because of muscle burning pains. Anxiety and panic.

GP is totally unconcerned. Checked me over and said I haven’t lost muscle strength, range of movement, tone or sensation. Took some blood to test for vitamin deficiencies (I often have these but never felt like this before). Told me to address my anxiety and referred me to the psychiatric nurse.

I’m hysterical. Imagining I have some awful disease. How can the GP not be worried when I have such severe symptoms? Please help me if you can.

For those saying ‘don’t Google’, I actually think that’s bad advice. I and people I know have been let down so many times by medical professionals, and it’s often only by doing my own research that I’ve found out what’s wrong and what will help.

For example, GPs often say blood tests are ‘within normal range’ when a quick google shows that they are in fact borderline. You simply cannot rely on GPs to do a good job unfortunately, and arming yourself with knowledge is a good thing when you are fighting being fobbed off.

You do need to make sure you use reputable sources though.

Namddf - I think you're right.

My GP actually told me to google my own stuff and when he does blood tests he always asks if I have found any others that I would like done. He's got like 3500 patients and doesn't have time to figure out what's wrong with me, but he's really happy for me to ask about possible things and to have private referrals for investigations.

Garret - well done for getting your appointment brought forward.

One of the problems of looking after yourself carefully at home is that you can be stuck in this limbo state for a long time. I eventually got fed up and went back to "normal" living. That really rapidly precipitated a crisis and then my blood tests stopped being normal, my potassium level went through the floor, and the problem became clear really quickly.

GP unconcerned
You're hysterical
Please see the connection
You're not accepting of the fact this is your anxiety

I’m not trying to freak you out or anything, but I experienced some of those same symptoms a couple of years ago (buzzing sensations, joint pain, numbness, burning pain and dizziness) I went to see a neurologist and like you, my muscle strength was normal as well as my bloodwork but he suggested I get an MRI anyway just to be sure. (And I didn’t listen cause I figured what I was experience was just probably due to stress/anxiety which I also do suffer from.)

Then, about a month later those symptoms cleared up and for a about six months I felt great until I suddenly lost vision in my left eye which finally prompted me to go to the ER and get an MRI. Well … turns out it wasn’t just stress and I was diagnosed with MS.

now statistically you probably DON’T have MS and what you’re experiencing probably IS just stress (or something else) but based on my experience I wouldn’t suggest that you just let this go!

Hi Garret,

I think the reason people mention B12 deficiency and MS at the same time is because B12 is needed for nerve function, and MS causes loss of nerve function so they can look a bit similar.

It's probably not a good idea to freak out though, worrying about MS.

If you are struggling with anxiety, which anybody would be in your position, then googling MS will probably not help super much.

It just means that when you see the GP it's good to say "can you reassure me that this is not MS?" and you will get a really clear answer on that.

If you do want to google anything about MS, then googling the Romberg test is a good idea. You can do that easily at home and will probably pass with flying colours.

Sorry to hear you’re in such a bad place, @Garret.

I had similar symptoms in my early 40s which I now wonder whether were related to peri. Who knows. Anyway, I heard the stuff about pain and inflammation so I wanted to pass on two things that worked an absolute treat for me.

Everyone is different so you obviously need to find what works for you, so ignore if this doesn’t sound up your street.

1. Food intolerance tests and infections tests by a lab to see if I had anything underlying (I didn’t)
2. Followed the MS diet on a hunch - it’s in this book - New Developments for MS Sufferers (By Appointment Only) https://amzn.eu/d/ekR84Y8. I’m not saying you have MS (neither do I) but the diet has worked for me.
3. Read this book by Dr Gabor Maté - When the Body Says No: The Cost of Hidden Stress https://amzn.eu/d/iKDRa4O

I felt better once I took my health into my own hands because like you, the doctors drew a blank.

A note on the books - I have coeliac disease, you have psoriasis. Both of these are auto immune diseases and both books I mentioned talk about autoimmune disease. The MS one says it was designed for people with MS initially (another autoimmune disease) but he found that people with other autoimmune diseases responded to the diet too.

I hope you feel better soon.

PS - I posted without RTFT and I can now see there has been some comments about MS. To all those posters - mine isn’t meant to be antagonistic in saying OP doesn’t have MS, I was just assuming she didn’t as she had t mentioned in her posts (I only read hers since there were so many pages of comments).

Thanks for those book recommendations @MoorlandWanderer . I have bought the Dr Gabor Maté to read now myself.

Ah you’re more than welcome. While you’re waiting for it to arrive, check him out on you tube and podcasts. I tend to just type his name into the search on both apps and you can find him giving talks and interviews. He’s a very wise and fascinating man. If you’re interested in a specific thing, type his name and then the thing eg ‘Gabor Maté autoimmune’. But I’m sure I don’t need to tell you how to search 😂😂

Thanks @MoorlandWanderer, that sounds great.

I had loads of similar symptoms GP not interested. Turns out I have coeliac disease.

I am off wheat too. I never had a coeliac test when I was eating wheat, and now it would be madness to start eating it again just to have the test. I had to give up a lot of different foods and ended up with malnutrition, so it's a bit of a double-edged sword.

Romberg test didn’t go well. Fine with eyes open but I’m wobbly with eyes closed. Terrified now because that’s a MS symptom right? GP insisted bloods are clear and examination normal therefore no MS, but pinck said their tests and exams were clear and they still had MS. GP wants to give me meds for anxiety and that’s all.

Currently I’m finding that I feel incredibly weak after a little exercise. I walked round the supermarket and by the end I was struggling with leg pain and arm weakness and shaking. A week ago I was fine. I’m scared. I know the GP said there’s nothing wrong but something must be causing this.

Hi @Garret,

When you do the romberg test do you just sort of waver from side to side? That's normal.

I think the romberg test is only positive if you flip right over and land on your back with your legs in the air.

You said that you thought this could be a virus still, which implies that it came on quite suddenly, quite recently. Is that right?

MS wouldn't come on whole-body, really suddenly, like that, as far as I know. MS causes trouble because it causes demyelination of the nerves. Your nerves are like electric cables, but instead of having plastic insulation on the outside, they have a layer of fat which does the same insulating job. MS is the name for an autoimmune condition in which the person's immune system attacks that fatty layer and strips it off. The condition generally comes on quite slowly, really because it's not possible for your immune system to strip all your nerves at once like that. Usually the first symptom would be slight fuzziness in one eye or slight weakness in one leg, but little else, as far as I know.

Here is another thing that you can try:

Can you lie flat down and count how many breaths you take per minute? You could do that ten times and tell us the ten numbers.

Then also try holding your breath and see how long you can comfortably hold your breath for, in seconds. (Can you hold your breath for 20 seconds, for example).

If you are comfortable doing that, you could do it ten times, with 1 minute of normal breathing in between.

Irrespective of what is wrong is wrong, if you are really really stressing, as I'm sure you probably are, then this should help you to feel calm.

Tell us what you find.

Yes I waver. I have to really concentrate to stand still. I feel a bit wobbly all the time, like a weird headache at the front and my head feels heavy. It’s hard to concentrate.

Yes it was quite sudden. I felt achy and tingly for a week, but functional and could still walk miles. Then in the second week I became super achy and could hardly move my hands, severe leg pains so I struggled to walk (pain worse the longer I walk), felt like I’m shaky and weak (debilitating after moving around a while), no appetite, fuzzy headed and confused, sinuses and ears feeling funny. GP saying results indicate not neurological, probs viral and anxiety making it worse.

Yes I can hold my breath. 28 breaths per minute.

Really good idea to do the count 10 times as @CyclingLegs suggested. Whatever stress your body is under right now will absolutely affect your breathing rate. 10 times gives you the chance to relax

@Garret

That's great that you are just wobbly on the romberg test. That is a good pass and you don't need to worry about MS, (as far as I know obv, I'm just a mum, not a GP).

If you are taking 28 breaths per minute, then that really really sounds like a bad attack of acute hyperventilation. Ideally, if you are nice and calm, you would be breathing at a rate of 12 breaths per minute. It's really great that you have identified that, because acute hyperventilation is something that you can treat yourself at home. Nice work!

In hyperventilation, the person is breathing with their chest rather than their diaphragm, and that makes the concentration of gasses in the blood go all wrong . It makes the person feel rubbish, and triggers more panic and more hyperventilation.

One thing that I find really helps when I am struggling badly with hyperventilation is this: I breathe right out as far as I can, and tie the belt from my bathrobe tight round my rib cage, just below my bust, like a corset. That means that I then have to breathe with my diaphragm instead of my chest and it pretty much instantly stops the hyperventilation within minutes. You could try that and see if it helps. You can also listen to relaxing music like this:

and if you do something with your hands, like folding washing or whatever, then that will help your mind to calm down. There are a ton of things you can do to calm hyperventilation and it is good to google those.

If you have a long term problem with chornic hyperventilation, then I have found it really helps to have an Oura ring like this: https://ouraring.com/
because it measures my rate of breathing and my stress levels and tells me when I am stressing too much and need to relax. It is very encouraging and has helped me a lot.

You can also go to see a clinical psychologist to talk about what is stressing you and that will help a lot. I do that, and it really helps so much.

The other symptoms that you are describing (other than the breathing) sound really really like a bad flu virus. Do you have a high temperature at all? Viruses can be really weird, but if it came on fast like that, then it's very very likely that if you rest and drink plenty and keep nice and warm, then it will just go away. It might take three weeks or whatever, but it should just quietly buzz off.

Does that help any?

I'm sorry that you are having such a hard time. I think it's likely that your GP is planning to wait three weeks and see if the "virus" just goes away.

I'm just a Mum and trying to help over chat here, so if I'm talking total rubbish, please do ignore me. I only have a very patchy picture of what your symptoms are so I don't know for certain what it is.

Oh my god - that breathing tip is a game changer! I’ve just tried it (I had to amend the instructions because when I tied bathrobe under bust it was round my waist 😂😂😂).

Anyway - wow - I feel like you’ve taught me how to breathe. I don’t think I’ve ever breathed from down there before. It’s shifting things inside and making my heart beat in a very ‘awake’ (alert?) way. Can’t describe it, but just ‘wow’ and thank you.

Thank you Cyclinglegs for being supportive and helpful when I’m scared. I don’t have a temperature, no runny nose either (DH has a runny nose and so did DC a couple of weeks ago). GP thinks I do have a lurgy because of sinus pain and fuzzy head feeling, perhaps this has caused the other symptoms. I didn’t realise I was hyperventilating, I will work on this.

I personally don't put much stock in bloodwork being 'normal' ... I've had a lot of bloodwork done over the course of my life due to various issues (extreme sun sensitivity, sudden, rapid developing cataracts in my mid twenties and now MS to name a few) and my bloodwork has literally always come back within the 'normal' range (with the exception of low D-3)

Also, your GP doesn't sound great nor would (s)he even be able to diagnose you with MS if you actually did have it ... you'd need a neurologist to do that so maybe that should be your next step if you're still worried.

I'm really glad that helped you @MoorlandWanderer.

Chornic hyperventilation is such an interesting condition. I've had it for 40 years and it's a pain the bum, but the physiology is extremely interesting.

Good luck there @Garret.

I just dug around online for a really good description of acute and chronic hyperventilation. This one is good:

https://www.drweil.com/health-wellness/body-mind-spirit/disease-disorders/chronic-hyperventilation-breathing-too-fast/

Have you had a blood test to check your immune system? I kept going to my gp with pain, fatigue etc & kept having all the normal bloods done (thyroid, red/white cells etc) & every time they came back as normal. After a year when I went back to get my results my gp actually told me the pain was in my head. A month later I went back & seen a locum. Initially she shared my gps opinion & I ended up bursting into tears & told her I wasn't crazy I really was in shed loads of pain & completely exhausted all the time so she said she order a test to check my immune system (which I had never heard of)
The following week my original gp rang me to send me for xrays as my bloods came back & my rheumatoid factor was through the roof. I finally got referred to a rheumatologist who diagnosed me with progressive inflammatory rheumatoid arthritis. A year later I got told I had secondary fibromyalgia & chronic fatigue. Ask for this blood test & also ask about the possibility of fibromyalgia as you will get that diagnosis after everything else gets ruled out. Good luck & I hope you get answers x

@Shantayyoustaysashayaway what blood test was it that you had done?

It sounds like you may have pernicious anaemia. Your iron was/is low, your folate is low and your b12 is on the low normal range. Ask for a trial of b12 injections to see if you feel any better, alongside a daily prescription of 5mg folic acid. Look up the pernicious anaemia society for a list of symptoms. You need b12, ferritin and folate to replenish your red blood cells which carry oxygen around your body. This also protects your myelin sheath around your brain and spine which holds all your nerve endings.