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Unusual debilitating neurological symptoms

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warsameu
Posts: 10
Joined: Tue May 18, 2021 6:33 pm

Unusual debilitating neurological symptoms

Post by warsameu »

I’m a female, 31 , and I’ve had symptoms since I was a teen ( I came from and family have visited a third world country where it is rampant ) but doctors didn’t take me seriously - I’ve had Helicobacter infections in my family for even longer than my symptoms started and we mentioned this and I still was not given any tests for it - I didn’t even know there was a breath test, although I’ve been going to the doctor complaining about the same symptoms as everyone else’s for over a decade. H pylori was found by chance in March 2021 when my symptoms became so bad I was finally referred to endoscopy to look for chrohns.


Starting 2021 January/March, I had the same issues as most, which were severe stomach pain, constipation, haemorrhoids dizziness, nausea , brainfog, aches, unable to get out of bed most mornings, I started feeling internal tremors with the pain which progressed more and more over the years, by February 2021 I would feel fatigue that comes on full on that I would need to sleep, flakey dryness, my ankles and feet became swollen I could barely walk and flakey dryness in my extremities, diarrhoea and this is when I was taken seriously to be referred to an endoscopy.

I went in for the endoscopy March 2021 and after a few days I started to feel full blown debilitating attacks which I didn’t have before and it comes on every single day just at random times or exactly when I’ve had something to eat - each time it starts with the same stomach pain, the first few times my family rushed me to the hospital but now I just live through it as my doctor basically called me a hypochondriac because the symptoms aren’t there when I finally scheduled an appt .. although I’ve never complained about anything before except stomach issues - it starts with upset stomach and nausea but won’t vomit, heart palpitations, my scalp starts to feel tingly and painful and hot and electricity shooting pains over my head and sometimes boulder or arms , Ear pressure starts in both ears and sometimes it’s just one, the heat from my head spreads around my scalp and pressure all around my head spreads in waves and I get severely itchy in my head and all the way down my neck, and extremities every single time - my legs buzz and my extremities feel numb and swollen to the touch, and the pins and needles all over my body is so unsettling as if there’s insects crawling all over me and into my ears - all I can do is lay down and cry for hour until it subsides Which is usually me falling asleep from exhaustion and palpitations. When it ends my whole body is buzzing and my feet are numb and burning - Recently, the swell on my feet has mostly gone but it comes back when I feel a stomach upset and gurgle, and it’s painful to walk since the attacks began, I find it difficult to walk to the kitchen or the toilet, It seems in the last few days the numbness has progressed to my throat and my tongue is starting to tremor, the main symptoms is just pressure in my head, that comes with ear pain, electrics shoots in head and pain and unrelenting itch spreading down to my neck and torso, it isn’t particularly painful but it’s debilitating and I lose track of time as all I can do is close my eyes and wait for it to end - and it keeps coming back again and again for weeks now, the ear pain and ringing it leaves it’s literally driving me mad - I’ve had the gp’s do the usual blood works and tests, and some ultrasound sod my kidneys and bladder all came out perfect - after I was told its in my head by my extremely busy doctor who would only give me five or so minutes to discuss it - also i found my palpitations and internal feelings and h pylori symptoms hard to describe on the spot I’m not sure what to do - I am finally well enough now to finally take my antiobiotics which were prescribed weeks ago. I definitely know the neuro symptoms came on after the endoscopy so I’m wondering can it be an issue of the endoscopy irritating my the h pylori - the last few weeks I was able to do nothing but sit in bed from the debilitation so I was able to pay attention to my symptoms and it seems to strongly correlate with pain and tenderness in my stomach or when I eat; my skin on my hands, feet have dried and my nails become so brittle and the burning in my hands and legs is unrelenting.

As I write this my abdomen is on fire, my entire body is trembling, itchy, and buzzing, and my belly, chest and throat is burning but surprisingly I’ve had no reflux since mid 2020 ( I changed my diet ). I just recovered from a 2 hr attack tonight. I don’t think I can continue with this, and I have been two gps who are reluctant to do anything; they won’t even discuss my h pylori diagnosis and the possibility it can be from that or refer me anywhere, it seems they don’t even know that it may cause neuropathy they have a blank face when I ask anything h pylori related in desperation - through the many visits the only time b pylori is brought up is by me, I also had to chase up my own medication kit from the hospital that diagnosed me. I feel totally helpless - does anyone face any debilitating neurological symptoms, neuropathy or progressing tremors from h pylori - at this point I don’t know how to even cross it out as something unrelated as I have no gp willing to listen or investigate or even refer me to a private specialist, I’m at a dead end - so I just sit in bed and ride out the attacks, and hope the antibiotics treatment for the h pylori relieves it all - the closest I found to my symptoms was a study done on h pylori toxicosis, or how h pylori contributes to Parkinson’s.


I’m wondering if anyone else has ever felt these symptoms after an endoscopy or in general :(

Helico_expert
Site Admin
Posts: 4600
Joined: Wed Mar 02, 2011 7:20 am

Re: Unusual debilitating neurological symptoms

Post by Helico_expert »

H. pylori causes inflammation in the stomach. It is possible that the inflammation has lead to other problems outside stomach. However, the evidence is not strong at the moment.

You had done a treatment. What antibiotics did you take? what are the doses? Have you done a follow up test to see if your treatment worked?

Sham37
Posts: 10
Joined: Fri Mar 19, 2021 7:23 pm

Re: Unusual debilitating neurological symptoms

Post by Sham37 »

Omg when I read this I could not believe it is almost exactly the same experience I went through.

I also suffered brain fog and tremors, inflammation to the point where my whole body felt like it was burning from the inside. I saw many gps/consultants had all scans/endoscopy/mri/ct/6 lots of bloods tests all of which came back clear.

I took my first round of antibiotics in March abs since then the sun Symtoms subsided but a couple of weeks ago some have come back. I have now been prescribed my second round of antibiotics and also have another test booked in 6 weeks time.

I thought I was going mad in the head but I do believe there is a very close connection with our stomachs and brains and the h pylori must cause these neurological symptoms.
I do hope someone can help you soon

warsameu
Posts: 10
Joined: Tue May 18, 2021 6:33 pm

Re: Unusual debilitating neurological symptoms

Post by warsameu »

I started the antibiotic on the day I made the post - as I was too ill to before hand.

So far, the symptoms which I would get daily/nightly has fully subsided - I only feel a little tingly or itchy or slight ear pressure some would say placebo but I don’t know how that could be as I went from crying every evening for a few months to calm. I’m worried it will all come back full swing after the course of treatment has ended. *sigh I’m so happy to hear someone here is experiencing the same I really felt like I was going mad too.


I have one question for the helico expert 🙃 I am taking biomedical bioactivated magnesium for a deficiency 1 tablet two times a day. Should I stop during the course of antibiotics, as I read that magnesium can interfere? so far go has stated she has no idea and I’ve given up bothering to ask anything hp pylori related

Helico_expert
Site Admin
Posts: 4600
Joined: Wed Mar 02, 2011 7:20 am

Re: Unusual debilitating neurological symptoms

Post by Helico_expert »

Magnesium would be fine. Nevertheless, what antibiotics are you taking at the moment? How are you feeling now? any side effects from the antibiotics?

warsameu
Posts: 10
Joined: Tue May 18, 2021 6:33 pm

Re: Unusual debilitating neurological symptoms

Post by warsameu »

Hi

I am in Australia, Perth,( actually planning to study at UWA next semester if everything goes well, I dropped out of UWA years ago due to my health ) so I’m taking the standard Australian nexium hp7 treatment


Day #4 and no crazy side effects gastroenterology related or otherwise.

I also came on to write how my before neuro /ear symptoms quite possibly subsided in space of three days on the antibioticsI haven’t had an attack since the antibiotics started, the only thing I feel from my previous attacks is just a lingering pain on my scalp behind my head that goes right to the top of my head - and a little ear pressure And I get the occasional hourly screeching machine noise in my head ( years of undiagnosed tinnitus as my doctors don’t take me seriously to ever investigate further ). Interestingly, I had 3 doctors tell me I don’t have an ear infection plus the scalp tenderness everytime in different parts of my scalp when attacks comes just didn’t fit ear infection so I’m so surprised at how on earth the antibiotics is stopping this but I’m really happy. My family and I are all surprised and I hope it isn’t just a lucky side effect that will resume back when I’m finished with the course of antibiotics *sigh. I’m not sure what specialist to see though, to check out the ear/scalp/ tinnitus issue.

So far I’ve only had what I would think should be normally expected side effects - I wake up on the morning feeling brilliant - but as soon as I take the meds I get tingles, spacey feeling, feel bad for about 15 minutes that goes away and then just a lingering meh feeling for the day .... and by night time body aches abit, achy joints a tiny stomach pang here and there but nothing relaxing on my bed doesn’t alleviate, again I’m taking it as to be expected and couldn’t be happier :) thank you for responding.

I did get a rather big swollen rash on the bottom of my back just above my buttocks yesterday on day #3 that feels like it has a hard lump when I push down but again I’m taking it in strides and not overthinking it, and it’s considerably less swollen now but still has hard lump but I’m chalking it down to swollen fat cells as I’m quiet chubby.

Aside from that no diarrhoea or outside of the usual constipation, I honestly feel greater than I have in the past months and hope it lasts . Thank you for asking.

Sham37
Posts: 10
Joined: Fri Mar 19, 2021 7:23 pm

Re: Unusual debilitating neurological symptoms

Post by Sham37 »

Hi could you continue to keep us updated on your progress. As my symptoms are similar to yours I just want to know how you are doing. Hopefully after the treatment all will be good.

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