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Need some serious advice and input (video links inside)

I’ve been suffering since March 2018 after feeling really heavy at work and then going into a seizure like episode where my limbs shake uncontrollably. I’ve had multiple issues since, such as extreme bowel issues, random bursts of nausea and wrenching and vomiting. A random heart rate which fluctuates daily. I’ve had tests done for POTs and it is believed I suffer from it, there were also notes on my ultrasound , which my cardiologist brushed over, but I saw mild regurgitation on my mitral valve, apparently my heart MRI showed 0 issues. What I can’t get over though is every month to month and a half I used to get severe pain in my coxis and have an episode where I lose control of my body for 5 minutes, and occasionally throw up afterwards. As of this year though the episodes have been as long as 11 hours and commonly around 2 hours long. After a 10ish week break I’ve had 56 episodes since the early mornings of Saturday. I’ve had a nurse and multiple other non medical people mention it seems like it could be an MS relapse/tremor, especially with my visual issues that have not had a cause diagnosed.

From the research I’ve done These seizures and back pain does not seem to be something you would expect of POTs, and POTs suffers have said the same I was made redundant from a job I due to this illness, and would like to get to the bottom of it as soon as I can. I had an MRI for my heart and I felt my hands etc feel very swollen, but persevered, after struggling to getup due to a heavy head etc, after 5 minutes of the MRI being over, I was still shaking but tried to stand and fell. I ended up being in a wheelchair for over an hour waiting to ride the most of the episode out. The next day I had a health assessment for job seekers, I tried to get up to change chairs and my legs went on me.

Skip forward to 2019, After my 11 hour episode I got my neuro appointment brought forward. I had an episode during my appointment, the “Neurologist” instantly refused to do any brain scans or anything, asked me about CBT to which I told her I had a clean bill of mental health in an assessment, to which she replied well sometimes you need help above them, which of course holds 0 LOGIC. They said she would send me for an epilepsy test, but said she is 100% sure it is dissociative disorder on the grounds of nothing. She then put this in my record with are full of multiple lies and the complete opposite of what I’ve written down in the diary I gave her and what I verbally said to her and she’s put down DD as a diagnosis on my records without even waiting for me to get the epilepsy test. PALS refused any wrongdoing or factual inaccuracies and I have now had to go to an ombudsman.

In the meantime my GP just keeps on bringing up stress, saying my symptoms are not systematic and is dragging their feet in relation to sending me for a 2nd opinion. They asked me to try and come in even though I am currently physically incapable as I said to them due to my limbs being in so much pain the very heavy head etc that comes with these episodes. They have simply asked me to keep on chasing the neuro and they will too for the epilepsy results, even though they have them on their records and just need permission to open them. In the meantime I’m just left constantly suffering from these horrible episodes. I have put some links below. I’ve had to cancel a small bowel MRI again as I am in no fit state. The GPs are saying the episodes I am having are not systematic of anything but that does not seem to be the case at all.

What I’m looking for is feedback on these episodes are the likely hood of them being MS. Also I can cause my hands to shake and spread to my arm simply by having my fingers in certain positions, this has been a permanent thing for 4 months.

I’ve been suffering since March 2018 after feeling really heavy at work and then going into a seizure like episode where my limbs shake uncontrollably. I’ve had multiple issues since, such as extreme bowel issues, random bursts of nausea and wrenching and vomiting. A random heart rate which fluctuates daily. I’ve had tests done for POTs and it is believed I suffer from it, there were also notes on my ultrasound , which my cardiologist brushed over, but I saw mild regurgitation on my mitral valve, apparently my heart MRI showed 0 issues. What I can’t get over though is every month to month and a half I used to get severe pain in my coxis and have an episode where I lose control of my body for 5 minutes, and occasionally throw up afterwards. As of this year though the episodes have been as long as 11 hours and commonly around 2 hours long. After a 10ish week break I’ve had 56 episodes since the early mornings of Saturday. I’ve had a nurse and multiple other non medical people mention it seems like it could be an MS relapse/tremor, especially with my visual issues that have not had a cause diagnosed.

From the research I’ve done These seizures and back pain does not seem to be something you would expect of POTs, and POTs suffers have said the same I was made redundant from a job I due to this illness, and would like to get to the bottom of it as soon as I can. I had an MRI for my heart and I felt my hands etc feel very swollen, but persevered, after struggling to getup due to a heavy head etc, after 5 minutes of the MRI being over, I was still shaking but tried to stand and fell. I ended up being in a wheelchair for over an hour waiting to ride the most of the episode out. The next day I had a health assessment for job seekers, I tried to get up to change chairs and my legs went on me.

Skip forward to 2019, After my 11 hour episode I got my neuro appointment brought forward. I had an episode during my appointment, the “Neurologist” instantly refused to do any brain scans or anything, asked me about CBT to which I told her I had a clean bill of mental health in an assessment, to which she replied well sometimes you need help above them, which of course holds 0 LOGIC. They said she would send me for an epilepsy test, but said she is 100% sure it is dissociative disorder on the grounds of nothing. She then put this in my record with are full of multiple lies and the complete opposite of what I’ve written down in the diary I gave her and what I verbally said to her and she’s put down DD as a diagnosis on my records without even waiting for me to get the epilepsy test. PALS refused any wrongdoing or factual inaccuracies and I have now had to go to an ombudsman.

In the meantime my GP just keeps on bringing up stress, saying my symptoms are not systematic and is dragging their feet in relation to sending me for a 2nd opinion. They asked me to try and come in even though I am currently physically incapable as I said to them due to my limbs being in so much pain the very heavy head etc that comes with these episodes. They have simply asked me to keep on chasing the neuro and they will too for the epilepsy results, even though they have them on their records and just need permission to open them. In the meantime I’m just left constantly suffering from these horrible episodes. I have put some links below. I’ve had to cancel a small bowel MRI again as I am in no fit state. The GPs are saying the episodes I am having are not systematic of anything but that does not seem to be the case at all.

What I’m looking for is feedback on these episodes are the likely hood of them being MS. Also I can cause my hands to shake and spread to my arm simply by having my fingers in certain positions, this has been a permanent thing for 4 months. I’m fully conscious during these episodes and can recall everything and talk.

I missed a typo, I’ve had 6 episodes since Midnight Saturday to 10am Monday.

1 Like

For someone reason this post has come out entirely wrong and is repeating itself… Below is what I intended to post. Really sorry, not sure what happened here

I’ve been suffering since March 2018 after feeling really heavy at work and then going into a seizure like episode where my limbs shake uncontrollably. I’ve had multiple issues since, such as extreme bowel issues, random bursts of nausea and wrenching and vomiting. A random heart rate which fluctuates daily. I’ve had tests done for POTs and it is believed I suffer from it, there were also notes on my ultrasound , which my cardiologist brushed over, but I saw mild regurgitation on my mitral valve, apparently my heart MRI showed 0 issues. What I can’t get over though is every month to month and a half I used to get severe pain in my coxis and have an episode where I lose control of my body for 5 minutes, and occasionally throw up afterwards. As of this year though the episodes have been as long as 11 hours and commonly around 2 hours long. After a 10ish week break I’ve had 6 episodes since the early mornings of Saturday. I’ve had a nurse and multiple other non medical people mention it seems like it could be an MS relapse/tremor, especially with my visual issues that have not had a cause diagnosed.

From the research I’ve done These seizures and back pain does not seem to be something you would expect of POTs, and POTs suffers have said the same I was made redundant from a job I due to this illness, and would like to get to the bottom of it as soon as I can. I had an MRI for my heart and I felt my hands etc feel very swollen, but persevered, after struggling to getup due to a heavy head etc, after 5 minutes of the MRI being over, I was still shaking but tried to stand and fell. I ended up being in a wheelchair for over an hour waiting to ride the most of the episode out. The next day I had a health assessment for job seekers, I tried to get up to change chairs and my legs went on me.

Skip forward to 2019, After my 11 hour episode I got my neuro appointment brought forward. I had an episode during my appointment, the “Neurologist” instantly refused to do any brain scans or anything, asked me about CBT to which I told her I had a clean bill of mental health in an assessment, to which she replied well sometimes you need help above them, which of course holds 0 LOGIC. They said she would send me for an epilepsy test, but said she is 100% sure it is dissociative disorder on the grounds of nothing. She then put this in my record with are full of multiple lies and the complete opposite of what I’ve written down in the diary I gave her and what I verbally said to her and she’s put down DD as a diagnosis on my records without even waiting for me to get the epilepsy test. PALS refused any wrongdoing or factual inaccuracies and I have now had to go to an ombudsman.

In the meantime my GP just keeps on bringing up stress, saying my symptoms are not systematic and is dragging their feet in relation to sending me for a 2nd opinion. They asked me to try and come in even though I am currently physically incapable as I said to them due to my limbs being in so much pain the very heavy head etc that comes with these episodes. They have simply asked me to keep on chasing the neuro and they will too for the epilepsy results, even though they have them on their records and just need permission to open them. In the meantime I’m just left constantly suffering from these horrible episodes. I have put some links below. I’ve had to cancel a small bowel MRI again as I am in no fit state. The GPs are saying the episodes I am having are not systematic of anything but that does not seem to be the case at all.

What I’m looking for is feedback on these episodes are the likely hood of them being MS. Also I can cause my hands to shake and spread to my arm simply by having my fingers in certain positions, this has been a permanent thing for 4 months.

Hello Anonymous

You have written a very detailed and long post. The upshot of which is to ask us, the unqualified members of this forum to comment on videos of what I assume are of you displaying symptoms of what you believe to be MS.

I’m sorry, but I’m not planning on watching your videos. I’m not capable of judging whether or not your symptoms demonstrate anything at all. And nor is anyone on this forum.

You clearly don’t trust or believe the medically qualified doctors who have seen you, know your history, have had tests done and have decided what they believe is, or is not, wrong with you.

Asking complete strangers with none of this history or qualifications to challenge your Doctors is nonsensical.

I hope you can find a reputable doctor with whom you can come to a diagnosis in which you believe.

Sue

2 Likes

Hello,

This is a very crass response. For starters I have not had any tests done, as doctors are refusing to any, I have been diagnosed with something of which there are 0 grounds for and in fact charities that deal with said diagnosis have completely ruled out my symptoms being caused by the diagnosis I have been given and strongly advised be to get a 2nd opinion. I have had a nurse who’s husband has MS said they are 1:1 of what he gets. However I do not feel it is a bad idea to ask MS sufferers on an MS forum whether the episodes I am having would be potentially indicative of MS, given that I have already seen videos form other sufferers that are a 1:1 of what I have.

It is not about trusting or believing, it is a complete and utter fact that when you look up what I have been given as a diagnosis and then look at symptoms they do not MEDICALLY MATCH UP AT ALL. In fact my friend has what i’ve been diagnosed with and 5 of her friends and none of them have the symptoms and know for a fact is is a false diagnosis. In fact my friend has put me in touch with a solicitor of hers as due to what i’ve already said I have a VERY VERY STRONG CASE.

Such a joke reply not even remotely recognising they have broke codes of conduct by diagnosing without waiting fo ra single test result and have not even done the relevant tests to rule out the many potential causes of said symptoms. Complete NHS damage control. I hope that your blind trust in the NHS does not ever threaten your or people close to you lives, I have a good few friends who would have DIED if they just listened to the first doctors they saw.

Best get in touch with their doctors then.

Are you Rubberduckzilla or Anonymous?

I’m having a problem making any sense of your posts… what do you want here?

Only a Neuro can diagnose MS

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Probably coming on here and demanding advice from MS sufferers who are not medically trained, just supporting posters in the best way they can is not the right way to go about things. You clearly have already addressed the issues you have with your diagnosis via PALS and have now to go to the ombudsman. I’d suggest you follow that course of action and ask for a second opinion when your case is heard. Alternatively if you can afford to, see a neurologist privately and ask for their opinion. Please don’t come on to this forum to attack others just because you are frustrated.

3 Likes

Best for people no to attack me then, ya know, that post was entirely otu of order.

Absolutely NOBODY has attacked you, whereas your replies seem quite aggressive.

You aren’t happy with what you’ve been told, by trained doctors, how on earth do you expect answers here?