Handhold please - A&E after sudden numbness

[OliveRanch]

I’m really sorry, shamelessly posting for traffic. My other thread is here www.mumsnet.com/talk/autoimmune_disease/4602352-should-i-give-up-pursuing-a-diagnosis?page=1

I’m waiting for an ambulance. I suddenly felt very peculiar this evening and both my legs went numb, although in hindsight I haven’t been quite right all day. I now can’t walk properly. Both legs as well as my arms are burning, my hands, arms and back of my neck are tingling. The soles of my feet feel numb. I’ve felt unwell for a while but never had anything like this before, it’s escalated so quickly. They are talking about a CT scan and MRI although I think the actual problem is b12 and/or folate anaemia.

I’m on my own and don’t have anyone to go with me. I’m terrified of A&E after a very traumatic incident there a few years ago. I’m less worried about the scans, it’s just having to be back in that waiting room. Especially without support. I know I need to be brave though.

I just need a little bit of a handhold / distraction. I’m so anxious

Interesting, explains the fatigue and weakness but not the neurological symptoms.

It will take a while to get all the test data to build the big picture. When are you seeing the neurologist?

OP ,never mind hopefully the doctor will contact me at some point - please chase this if you've not heard in a couple of days.

@IrisVersicolor I’m hoping the doctor doesn’t do another ‘oh well it’s not that elevated, don’t worry about it’ it’s giving me some hope at least that some relief from this fatigue might be in sight. Since the legs episode it seems to have got worse… this morning I got all ready to go out but felt so overwhelmingly sleepy I ended up having to cancel my plans and fell into a deep sleep for two hours. I’d only been awake for four! I’m even past the point of being annoyed with myself now… I’m having to sit down just to brush my teeth.

I haven’t heard anything from the neurologist yet. It was supposed to be within days but that seems unlikely now. I also haven’t heard from my GP, I’m sure he said he would call me but maybe I got that wrong. On Sunday night my left arm was throbbing and went numb, then I got pins and needles in that hand. I went for a slow wander in the park yesterday and it became apparent my legs still felt a bit numb and my toes were curling under when I walked. I hadn’t realised just walking short distances in the flat. I’m not sure whether to chase them or leave it a bit longer, I know they’re very busy but I just want to know what’s happening.

Chase, for sure. It might come through by the end of the week.

If not, if you have the money you could still do a private appointment with a neurologist who also has an NHS practice.

Goodness OP you must chase .They are busy and regrettably this makes it necessary to chase ,they are fire fighting and I'm afraid you need to demonstrate that you are urgent/one of the fires that needs attending to .It will save resources in the long run if you are treated/investigated before you get worse .

Do you think it would be reasonable to chase in the form of booking another appointment then? It’s a good point that it will save resources in the long run.

Unfortunately I don’t have the money to see someone privately. I did have private insurance until recently but I could no longer afford it. I’m still in the grace period where I could reinstate it but I’m not sure if this would now be treated as a pre-existing condition due to it occurring while my policy was paused.

Yes ,I would make another appointment .You honestly can't go on like this .

I would chase up the existing referral first. It may be sufficient to ask the admin team if the referral has been written and whether they can see a response from the doctor’s admin.

If you can afford it I’d reinstate the health insurance now. Afaik pre-existing conditions generally mean ones for which you have received medication, treatment or advice. You don’t actually have any diagnosed condition yet - at worst you have raised iron which, for all anyone knows, could be temporary.

But some policies have a moratorium so that a condition that occurred some years prior to the start of the policy will be excluded for the first couple of years your policy is in force. Check that.

However as this would be a reinstatement of an existing policy, you may get away with not having to answer detailed health questions.

If it looks as if there’s no appointment in the offing by Friday, I would look for a private neurologist.

You mention iron overload . . . My dad has a condition called haemochromatosis which means his body stores too much iron. I’m sorry, I haven’t RTFT so I’m not sure whether or not you’ve been through the menopause or what age you are (my auntie also has it and her symptoms became apparent after she’d experienced menopause)

I don’t see my dad much but I remember his saying he was having to have a lot of scans and tests to rule out MS. He was experiencing joint pain, muscle pain, weakness, numbness etc. Perhaps worth a mention?

@IrisVersicolor I’ll speak to the health insurers tomorrow and see what they say. They’ve always been very reasonable previously. I can’t afford really afford the excess right now but I know this is important and the sooner I’m scanned the better.

@user1488481370 I did do a bit of reading on haemochromatosis and some of the symptoms do fit, but I couldn’t find anything about loss of feeling in the legs and suddenly not being able to walk, loss of reflexes etc. If I do have it I don’t believe it’s the cause of all of this but at least it’s been flagged up now so they can treat it if necessary.

I’m new to this thread but just caught up in the entire thing and honestly? You need about five things, and one of those five is going to give you the answer, either positively or by total elimination: the ANA, the RF test, a CT scan, an MRI, and a muscle biopsy (possibly just a single needle biopsy) in your weakest side.

You said your ANA didn’t flag anything in March but they were doing it again and the RF. If you saw that your transferrin level was elevated (I’m sorry, OP, but unfortunately no, this wouldn’t explain most of your symptoms - I’ve had about six -osises show up on my blood test when I was already ill with my primary diseases and they meant nothing except that I was badly inflamed), then I assume this means your ANA and RF are back too? I didn’t see you mention them? Were they both normal?

You mentioned about 40 symptoms and out of ALL of them, the only ones I can remember even 10 minutes later because they struck me as fitting together and important are: drooping eye (huge tell for myasthenia gravis), one-sided weakness (MS, ALS - myasthenia gravis causes general weakness), new numbness (MS, arthritis, Lyme), and new fatigue when you said you needed two hours sleep after awake for four (MS, myasthenia, every auto-immune disease known).

The biggest difference is that MS causes central fatigue - this means it can be part of the disease, but often caused by other parts of the disease like sleep disturbance or pain. With myasthenia, it’s peripheral fatigue - it’s caused by a very exact mechanism whereby your body can’t handle acetylcholine correctly, and as a result, your muscles are reaching failing state. Only you know whether your fatigue is coming out of the blue (myasthenia) OR if it comes after you have high levels of pain and sleep disturbance (MS),, iyswim?

That said, l really hope you can push and get the additional tests you need. I know that cold fear one gets of not knowing why these things are happening to you, if they’ll get any better ever, if this is your new normal for ever, or even the fear they may get worse.

You WILL get through this. But. YOU are not wasting the NHS’ time. If you ignored these symptoms now, it would be more and more expensive and difficult to treat. Please don’t feel guilty. You deserve care. You are allowed to be healthy. Good luck, OP.

If you have haemochromotisis, it’s likely your ELFT’s will be out of whack too. (Liver enzymes.)

@5YearsLeft you are right, I had 5 years of GPs not realising my drooping eye was a flag for myasthenia. Finally in process of being diagnosed after an optician spotted it. I have generalised MG but got so gradually used to the other symptoms (weak neck, slurred speech etc) that I never went to GP about them. I know ptosis can be involved in other neurological conditions too though

Op - its a neurologist you need to see for sure. Have you been given a date to see one on the NHS yet?

@5YearsLeft thank you for replying and taking the time to read the whole thread

RF, CRP and ESR were all normal. It looks like the doctor didn’t order another ANA after all which is a bit frustrating. The only other thing that was flagged up aside from the transferrin sat was MCH, but that was only 0.8 above range so has been marked as no further action.

The eye thing I had wasn’t ptosis, it was just that one eye suddenly became really puffy and wrinkled, with the under eye area dropping a bit. I was only 21 at the time. Maybe it wasn’t related and was some sort of allergic reaction.

The thing I experienced with my legs was definitely a numbness rather than muscle weakness, it was almost like I’d had local anaesthetic injected into my hips, backs of legs and ankles. I feel tired weak rather than muscle weak if that makes sense, so my feeling is it’s not MG.

I do have sleep disturbances which is why I’ve been referred for a sleep study. At the moment it feels like I’m sleeping better although numbness in my arm wakes me up, as well as endo pain. Previously it’s been very disturbed by night sweats, bolting upright gasping for air, crying out in my sleep and myoclonic jerking. These things have been ongoing issues for a long time so it may be that my body is just exhausted, i.e. secondary rather than primary fatigue. And of course if it turns out I have haemochromatosis that’s not going to help.

I do fear this will never improve or get worse, but perhaps ridiculously a worse fear is coming across as a hypochondriac and ultimately being told it’s all in my head. I think I mentioned in a previous post how this happened when I was having symptoms of a heart condition, and again later in life with endometriosis. My parents weren’t the best caregivers and used to ridicule me when I felt poorly. I remember having horrible ear pain, muffled hearing and a crackling every time I swallowed but my parents told me to stop being ridiculous and that I was a hypochondriac. Of course, when they eventually took me to the GP they found I had an ear infection but I felt so humiliated and ashamed. Sorry, bit of a cathartic tangent there.

@SweetSakura I have booked a telephone appointment this morning with the GP who originally tried to arrange for me to see someone that day to tell him about the worsening episodes of arm numbness, and I’m hoping I might get a better idea of when the neurology appointment happen.

OP, if the leg weakness gets worse/you can't walk I'd suggest going to A&E to see if you will get seen sooner that way. IF this is MS, steroids will help.

It seems that you are having lots of tests, but that no-one is co-ordinating all this. Neurological conditions often seem like a random collection of bizarre symptoms until someone takes responsibility for collating all the tests and information. You really do need to be under the care of a neurologist to get a bit of joined up thinking.

Chase the neurology referral - ring his/her secretary - say you will take a cancellation. Plead your case. Do not be silent.

God, the state of the NHS now makes you want to weep.

@OliveRanch Based I’m what you’re saying then, I wouldn’t worry as much about rheumatology, and instead chase the neurologist as it does sound like you need to rule out something more in the sclerosis or myositis category, and you need scans for that (myositis might still require the biopsy), and you need someone coordinating them, and tbh, at the beginning of the disease, if I remember correctly, sometimes even scans aren’t reliable because your body may have symptoms before things appear on a scan. You have to scan, then scan again in six months and compare (Sorry, bit ill myself and just can’t Google it right now and can’t remember exactly, but I’m almost sure that’s right).

And I’m very sorry your parents, and by extension other adults influenced by them, left you with medical trauma. It’s the last thing you need you right now as obviously it’s complicating this issue a lot - you HAVE to know that most people who lose feeling in their legs are terrified and wouldn’t worry about wasting NHS time; they would just want to ensure they were stopping it from becoming permanent. The fact that what your parents did to you could make you question yourself that much is heartbreaking. I’d recommend counseling but the fact is, you’re going to have to deal with medical care before you can get through counseling or possibly even schedule counseling. So I recommend a small tip instead for self-kindness that’s very handy and if you can train yourself to do it every time you start to hear your parents in your head, it will help immensely: instead, ask yourself what you would want your very best friend in the world to do in this situation. What care would you want them to receive? What would you advise them to do? Would you ever tell them they were wasting NHS time? I do hope you have time for counseling, maybe in the near future, but until that day, the only possibility may be to just constantly train yourself to be as kind to yourself as you are to your friends; and you have to do it CONSTANTLY, until it becomes a reflex (“if it were my best friend, I would tell her to go to A&E and I would tell her to never feel guilty because it sounds so scary… so I should go to A&E and I shouldn’t feel guilty because this does sound scary”).

I sympathize op, I gave yo pushing GPs for a similar reason - lots of mocking from my ex H. Even when I was visibly ill (eg hyperemesis)

I second the imagine you were advising you best friend advice.

Also don't be too despondent about the future. The story of years of struggles before a diagnosis is common with this conditions, but once you have a diagnosis and treatment you will start to feel better.

I hope your GP is able to give you timescales. If not I agree with contacting the neurologist's secretary. When mine had my list of symptoms they bumped me right up the list. Hope you get similar

My SIL was diagnosed with something that I can't remember the name of. Her symptoms looked like and were initially diagnosed as Bell's Palsy I think? It typically causes one side of the face to droop. Fortunately, her husband is a doctor and in speaking with other doctors, was told to get her seen by a neurologist (he is in a different specialty). She was diagnosed then with something entirely different, which is actually an autoimmune condition, but I can't for the life of me recall the name of the diagnosis. I have sent her a message to find out. I'll let you know if she gets back to me.

This a link to what she was initially diagnosed with but she had additional symptoms so her husband didn't buy it. Bell's Palsy

I’ve now spoken to my GP who says they’ve already been in touch with haematology re my transferrin sat levels. They’ve asked me to come in for a repeat test and if that one’s also abnormal then they’ll monitor me and potentially send me for genetic screening for haemochromatosis. So that’s that sorted, hopefully.

He told me the referral to neurology is urgent and gave me the name of the consultant as he agreed it would be a good idea to speak to the secretary to put myself on a cancellation list. The consultant is an MS specialist in a city 150 miles away though so I’m really confused. There’s no mention of her working anywhere nearby. I even looked up all the neurology consultants in my region to check I hadn’t misheard the name but there’s no one with a name remotely like it. I phoned her secretary but it went to voicemail so I’ll try again after lunch. Is it usual to be referred out of area?

It might be or they may run clinics within a more local trust.

google polio