PLEASE CAN SOME ONE HELP ME😥😥😥😥X: Hi all. I... - LUPUS UK

LUPUS UK

26,733 members22,738 posts

PLEASE CAN SOME ONE HELP ME😥😥😥😥X

Angela71
Angela71

Hi all. I really need some advice before I throw myself off a bridge!!!!!!

It all started about a year ago. I was in bed and woke up with a wierd feeling in my head and a buzzing noise in my ears. And flashing lights. It frightened me to death. I Google and brain zaps came up.

Then a few days after that I woke up with stiff fingers solid like numb pins and needles. Very strange.

I'd had a bad shoulder for months. Stuff and very painful but could still use it

Then I started with a weird sensation in my groin area which lasted for 3 weeks felt numb. And also stiffness in my left leg.

Went to doctors told him he ordered mri of brain came back clear. Then lock down came and I started to get calf muscle twitching it was horrendous 24/7 never stopped.

Rang the doctors and told him he had me in and did my reflexes push-pull and when he did my knee reflexes do a brisk overactive and he said it was a cause for concern. Which when I asked why??? He said it could be m.n.d.

Which freak me out totally I didn't know what to do I walked around some months with this in my mind I have motor neurones disease my husband was going mad. I rang the doctors and told him he'd have to do something it I've left to admit me to hospital or else I'm gonna do something to myself it was that bad. So you sent me to A&E to be admitted and when they did my blood pressure it was high they didn't ECG and I ended up having a heart attack. Due to all the worry about it caused by him telling me might have motor neurone disease. Was in hospital had a stent fitted all ok now with that he ordered me to go and see you neurologist. Which I did do he ordered emg ncs. All clear.. and then the neurologist diagnose me with fnd functional neurological disorder. Which by no means least I have I know I don't have that. I've asked for second opinion which I go next month on the 15th of October. My symptoms are strange. I have fasciculations in most of my body but not had now. I have numb feelings in my fingers on and off my wrist feel weak. I have numb tongue. Burning pain in my shin. Eye floaters. Never off the loo for a pee. Head aches. The most worrying symptom for me as I feel like I'm being crushed my body feels heavy my arms my legs it's weird I can explain it I feel Weakness In My Arms. My husband is going crazy with it all. I don't know what to do. Do you think this could be lupus??? Please help where do i go my doctor is rubbish 😥😥😥xx

27 Replies
oldestnewest

Also dry eyes and mouth and diaphragm spasms x

Hi sorry you are suffering so much.first of all get a handle on everything and keep it all in perspective.illnesses are manageable. i dont think it would be fair for any of us to say its lupus as we are not qualified to do so and there is alot of overlap between different AI illness so symptoms can be similar. My advice to you would be to request a full bloods panel if you can get DS-DNA, ANA, compliments,immungloblins,thyroid and urine done then they may helps shed light on what's going on.try to stop stressing it only makes things worse.if you have got an AI illness then it's a very long journey and stress must be kept in check.i get what I call lead legs when they feel so heavy I do not think I'll make it up the stairs .in my arms I get muscle fatigue which I put down to chronic fatigue associated with AI.

If you are unhappy with your gp the try another in the practise. as it can very long journey to diagnosis (years in many cases 5yrs for me) you need a gp you can talk to and will refer you on to the relevant consultant.best of luck stay calm keep smiling you will get there x

Hi,

I have just had a phone appointment with neurologist as I have severe fibromyalgia, raynaulds (excuse my spelling, not my high point), me,thyroide disorder, ptsd, arthritis, sleep Apthnea, chronical depression and on and on.....loads more but cant be bothered to list them all. My meds were perfectly balanced, but then 6 mths ago Dr decided to screw around with my meds.

I have forced myself to work full time, but then came home n died each day just crashed in bed then next day same routine for years. This obviously used to keep my muscle strength up although still weak next to normal peeps.

Then came lockdown...normally busy catering mgr, to nothing.

Sitting around like a slob, like 99% of population.

My muscles got weak, now because of this at least i think thats the answer, with not working. I will get to my point bare with me.....my symptoms at min:

Stiff body everywhere from head to toes to finger tips. Extreamly stiff. Headaches, skin itching so much so i could scratch off my skin. Burning skin, sweating prefusly over nothing, freezing cold but sweating like i said, cant hardly move as the pain is so severe everywhere & I mean everywhere( example as bad as siatica), sore throat like strep throat, septic marks, but tests came back negative. Swollen hands, heel displacia so got crutches. The pain is so bad i want to die to releave pain...and so weak.

I have had this fibro for over 30 years n have never been like this. My hair is filling brush full hair loss daily, started getting terrible bad facial skin .

Is this because i have finished work because of lock down, so muscles have not been used so now showing that the true weakness is so bad & pain uncontrolable levels. Is it because dr reduced my opiots with no advice or help to come down... my vision has also been effected. The last 4 weeks have been as if I have flu but i havent.

They think I have Lupus too, specialist is gonna get menin to hosp for further checks as all my sympoms point to it they said. They also said my auto amune levels point to this...they said finally going to sort me out., just took them 30 years to come to this.

Allot of what you are having is what I am suffering..I did the questionaire for Lupus online & I ticked every box. So brought this to my Dr attention. I feel my normal dr are no point at all. They can not help me. So bypassed them & went to specialist.

I think u need to do same...xxx

Hi Carollynn.i think your message was meant for angela as I have a diagnosis of lupus.gps dont know who to deal with our complex issues so rheumatology etc are the best place to go. X

Hi,

From what you have said this seems neurological and some but not all of your symptoms can be attributed to different types of auto immune disease.

There is a charity based in the UK that sign posts you to what it may be for you then to follow up with your own medics. They were really good with my wife who had many neuro symptoms.

I am not a medic but from my investigations with my wife a few questions :

1. Have you been tested for epilepsy or MS ?

2. What do your blood tests look like

3. What are patterns of the symptoms do they come and go etc

4. What are the peripheral symptoms if any rashes, ulcers, pains, discomfort - quite often these insignificant things can signpost the cause.

I suggest the neuro charity phone line would be a good first call - you can google it or I can look it up for you.

Either way please stay in touch with this blog - you will get through this and you have a lot of people on your side here.

Hi Jimbo.

Yes been tested for m.s and epilepsy ruled out. My symptoms wax and wane. It's mainly this heavy feeling through my body shoulders arms and legs I feel like I've got a lead suit on. I would be really grateful if you could send me the contact number or an email address I will be grateful thank you

jimbo1605
jimbo1605 in reply to Angela71

Angela,

Try Brain and spine foundation

0808 808 1000 open from 9-4 m-th ask to speak to a specialist neuro nurse

helpline@brainandspine.org.uk

we found them to be excellent

There are others as back up

Please keep in touch with the forum

If you do not agree with the diagnosis then I’d push further for answers, for another opinion .the charity mentioned to you sounds like a good shout I wish I’d known of it. I was told by gp it’s fnd after diagnosed fibro, I feel like you , it’s not and symptoms not matching do on the long journey for answers. It’s a scarey time especially when diagnosis and symptoms don’t add up (that’s a whole thing on its own) and I was at my wits end and worse when I found this forum and support and help. Easier said than done but try to get a clear head, take a deep breathe and know you’re not alone. If it helps I’m on the journey myself, I can relate to you and symptoms and it shouldn’t be but a fight to get to bottom of things but you need a starting point so try to get calm and things will get clearer and you will be able to push for answers with clarity. Come back here you will receive much support and understanding

All best wishes 🤗🙏

Stiff19 God bless you. I know what you mean. It's driving me crazy. Nearly 7 months of muscle twitching funny feelings. Numbness heavy body like am on concrete. Having heart attack. I feel like I want to end it all. My poor husband is at his wits end. Neurologist told me I had arua migraine at first then write to my doctor and said it's f.n.d

By nut job doctor to me I possible got m.n.d. I can't believe am still here with all this. I wish you well keep us posted about yourself best wishes

Angela 😘x

stiff19
stiff19 in reply to Angela71

It’s so hard I feel for you I really do, but don’t let them beat you, the symptoms are awful, the disregard is too, gps shouldn’t in my eyes be making these presumptions they should be referring you, if u you aren’t happy I’d ask for a second opinion. Did they offer any help for your symptoms? You’re worth more than ending it all that’s for sure so don’t think like that, think of getting help, try some relaxation techniques and if you can do this you will feel calmer and clearer head ready to face your appointment. Keep a diary of your symptoms and write any questions down you will want to ask at appointment. Try not to google , there’s too much with similar symptoms to try to work it out yourself, and don’t listen to doc or anyone it could be this or that it could or could not be but you shouldn’t worry about things that may or may not be. I see a team of docs and as they talk aloud discussing a few things were mentioned but until I know what’s wrong I can’t add worrying to the symptoms and stress would make me feel worse and will you. This is not the end for you angela71 , this is a new phase, a beginning to find some answers. Try not to stress but prepare for your appointment, I hope it will bring you some answers, you’ve just hit a hurdle but you can get over it and move on, put all that behind , and move forward , , it’s all great advice I received here, it will Help keep your sanity and you will feel better for it, I don’t know why it’s such a battle it just is but stay strong to battle through it, best of luck with your appointment, stay strong stay safe and take care 🙏x

Hi Angela, people here are right, we can all empathise and identify with misdiagnosis and frustration and it can take years to finally find out what you actually have going on. I am in year eleven and I have had diagnoses ranging from Lupus to hysteria and most things in between. In 2011 I was told I had Low Grade Lymphoma and told I had approximately four years to live, I was devastated and did not tell my husband, we only have one another so I wanted to spare him the pain. I buried myself for months making a will, writing out recipes that he liked, lists of direct debits, schedules of when bills needed paying, contact numbers etc. Then I thought this just does not feel right. I asked my GP who thankfully was inexperienced but wonderfully supportive if she would refer me to the Lupus Unit. They confirmed Lupus and after a further CT scan I was discharged from Haematology and Oncology. Since then my Lupus diagnosis has been challenged and I have been told that I have Bechets? Fibromyalgia? UCTD?I know right now you will be feeling desperate, distressed and unsure where to turn but there are things that you can do to help the doctors make a diagnosis. Firstly keep a symptom diary. Anything that feels uncomfortable, strange or painful. Next get your husband to photograph any rashes,blisters, hair loss, swellings. It will help him too having something concrete to do to help you. I think we underestimate how much our illness impacts the people who love us. Their lives change completely too. This is a wonderful, welcoming place and you can learn so much from people here, I certainly have. I wish you so much luck xx

This sounds like it could be at least asking the neurologist about a differential diagnosis ( if the NMD is negative) of Antiphospholipid Syndrome.

It’s often mistaken for MS.

It can cause almost every symptom you have described due to sludge blood having trouble enervating nerves.

Dr Tan ( colleague of a Prof Paul Holmes, neurologist in London) is the specialist who does highly specialized nerve conduction studies to rule in or our neuro muscular diseases. They will also show low blood flow.

Dr Paul Holmes is an APS specialty neurologist.

Sorry the other thought and following kellyintexas if you are not getting anywhere with neuro is to look at vascular / blood. So bechets, APS and vascular disease etc.

Hi all thankyou for you kind messages. I have spoken to my doctor this morning and he's arranged blood test for lupus nexted Wednesday. And also prescribed pregabalin. Let's see what happens. My fore arms feel tingly. It's weird all this. 😥😘😘xxx

I’m so sorry your going through this! I know I too have wanted to just end my life because because my symptoms that come and go , no explanation from doctors for 14 yrs! I thought I was literally going insane. I must be crazy if they say I’m fine! I have Lyme disease, it affected every system in my body, heart, had two blood clots, neurological, stiff neck, Bell’s palsy, flu symptoms that can last for weeks, RA, ( not sure if caused by Lyme) . Anyway you should be tested for Lyme to by a Lyme literate doctor. We feel your pain... but it doesn’t help your suffering. 😞 good luck I hope you feel better and find a doctor who can help you’

Nvrenfhorses2

Bless you. I've been tested for lyme back in May. I feel your pain. It's horrendous. Covid don't help either. I really want it over with get answers I've even looked into private but nobody seening anyone 😥😥xx

It’s so common with APS to have limbs go all tingly numb and weird. It happens to my lips also. That’s when I know to bridge with a heparin injection until my warfarin level comes back up... of course I confirm this with an INR blood draw first... my GP has an arrangement whereby I get tested as needed at local hospital and they ring me straight away with results ( within 2 hours) so I know if I need to inject with heparin/ and by how much , etc...

Heparin and warfarin are like magic!

Angela,

Sorry its me again trying to help - a number of questions :

how often does it get worse

what causes it to get worse

Does everything get worse or just some things

Are your kidneys working normally (Egfr/ blood protein in urine)

Hi Jimbo,

It never gets worse it stays the same am never rid of it.

I've too pregabalin this morning which neurologist prescribed.

I've not had that heavyness though my body today which is a plus side for me.

I've not had my urine checked.

But I can tell you am never off the loo. I can go about 30 times a day.

I rang the brain and spinal they were very nice but really didn't help me in any way just said see how I do with tablets and my second opinion but thanks anyway for the number was very grateful and you're not mithering it's fine I don't mind any time thanks for your reply

Best wishes to you and your wife 😘xx

Hi Angela.

Some of these symptoms sound like possible heavy metal toxicity. Have you been tested for heavy metals, like mercury, lead and aluminum?

Angela 71, have you seen a Rheumatologist? He knows what tests to do either to rule out or confirm why you are experiencing some of your symptoms. a Rheumatologist confirmed my rheumatoid arthritis and auto-immune disorder. My symptoms were similar to some of your symptoms. chronic tinnitus, vertigo, migraines, pain and numbness in joints of hands, chronic fatigue, depression. There's no definitive test for Lupus, my ANA was positive but it's just a tool used to help diagnose lupus along with a battery of other tests. Good luck with finding a good Rheumatologist. Let me also add that I had to make a complete diet change.

Angela71
Angela71 in reply to Nurse22

Nurse22

Thank you my doctor won't do nothing till bloods done. But thankyou for your support.

I'll will keep you posted hope you are well.😍😍xx

Has anyone talked to you about the auto immune disease called guillain-barre ?

Hi Jimbo,

No nobody I have googled it like we all do. But is that not progressive in like hours??, mine is been happening over the course of about 3 for months. I've just posted what happens to me. Its like a seizure or something I don't understand. Nobody seems to listen and the dust look at me blankly

Angela xx

jimbo1605
jimbo1605 in reply to Angela71

Angela, My understanding is that GB can come in bouts then go away and then come back again. In some it is progressive in others it just grumbles on.

If you think it fits then mention to your doctors.

Good luck

Oh Angela you poor thing. To be told you might have MND must have been the most frightening ever. At least you can reassured from the neurologist that you don’t that or MS, because however bad some drs are at identifying the more difficult symptoms they do know how to exclude those two.

It doesn’t sound like guillain barre. My son had this a few years ago. It can be more slowly progressive but tends to plateau after a few weeks then slowly improve and yours sounds like you have too big a range of other symptoms rather than the paralysis which tends to happen with that.

You need to see a rheumatologist and a decent neurologist to go through everything. I have neuro- lupus and share some of those symptoms but there can so many causes. It’s a case of keeping on pushing for answers as treatments can make you much better.

Good luck and we’re all here for you xx

Angela71
Angela71 in reply to Melba1

Thank you I will do God bless you 😘😘xx

You may also like...