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Offline Pan

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A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« on: August 16, 2008, 09:11:12 AM »
I have devised this thread as some guidance for those people who have visited this forum and are concerned about specific symptoms that are effecting them and, in particular, those who are worried that these symptoms are an indication of neurological conditions such as Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS) & Motor Neurone Disease (MND).

The first thing that must be realised is that NOBODY on an internet forum can ever diagnose you or truly give you any reassurance that you do not have these conditions.  Should anybody experience any signs or symptoms that are new to them they should ALWAYS approach their doctor in the first instance in order for these to be examined.  In the vast majority of cases a GP will be able to advise you that these symptoms are benign but some doctors will often refer you to a neurologist for their opinion, if this should happen it is not value laden as regarding a possible diagnosis but rather would be the standard format for how you present to the doctor.

This thread is good news, it is good news because it has had to be written, it is good news because hundreds, maybe thousands of people have logged onto this board and countless other anxiety forums totally convinced that they are suffering from a neurological condition despite being told by health care profesionals that this is not the case.  All these people ask the same questions and all these people have the exact same worries as you are having now.  If this is you, if you have been to the doctor, maybe even a neuro, maybe even two neuro’s, maybe even had an MRI, maybe even two MRI’s, well, you get the picture, if you have been told by your health care profesional that you are healthy but you are struggling to believe this you may find some help from this thread.

So, you have come to an anxiety board.  I guess that is because your doctor has told you that you are suffering from anxiety.  Actually, my guess would be that your doctor has told you that you are suffering from ‘just’ anxiety and, if you are lucky, you may have been given some leaflets, you may have had some books recommended and you may even have been given some medication.

So, what took you to the doctor?   Was it the tingling? The pins & needles? That damned annoying twitching eyelid that just won’t let up?  Was it that weird thing when you keep seeing the flashing in your periphiral vision?  The strange sensation in your throat where you just can’t swallow?  The constant muscle aches and cramps?  The constant small joint aches and cramps?  Do you have that weird internal vibrating feeling?  Was it the percieved weakness in all your major limbs?  What about the foot drop you have been noticing, the clumsiness, finding the car keys in the fridge?  Was it the chronic constant fatigue, that feeling when you wake in the morning like you haven’t actually gone to bed?  What about the myclonic jerking, that bizarre moment when your whole body jerks like you have had an electric shock?  Was it that constant twitching in your calf muscles that looks like you have a bag of worms under your skin?  It could have been the parathesia, the feeling on your skin where one moment it feels sunburnt and the next minute it feels soaking wet?  Maybe it was the atrophy, you know, the muscle loss in your bicep, your thigh that is so obvious to you but what frustratingly nobody else can see?  What about………are you bored?  I’m bored!

So, you have had some of those right?  Maybe like me you are unlucky enough to have had every one of them…not much fun is it!  When you first started getting these weird and wonderful symptoms cropping up I bet one of the first things you did was run off to the all powerful internet and consult that all knowing oracle, the good lord GOOGLE.  If you did this, if you searched for your symptoms on a search engine on the internet, congratualtions, you have taken the first step on developing this weird and wonderful anxiety disorder known as Health Anxiety.  The reason we Google is because of a basic human need at a time of stress, we are scared and we want reassurance, the problem is nothing you ever read on the internet will give you the reassurance you need, you will unwittingly discard the plethora of evidence that tells you that you do not have a neurological illness and instead will latch onto and inflate those things which seem ambigous, why would you do this?  I suggest that at this point it may be adavantagous for you to look in the Genaralized Anxiety Disorder folder on this forum and see the negative thought processes and over generalization and catastrophising that defines GAD, it just may ring some bells for you.

So, by the time you have gone to the doctor you are pretty much resigned to the fact that it is MS or if you are really unlucky ALS.  You picture yourself in a wheelchair, the kids looking at you with pity as you can’t play sports in the park with them anymore, you picture your partner standing by you and caring for you but all the while you feel the resentment, they never signed up for this, you picture the scene in four years time, confined to a hospital bed with your family and friends round you with the fruit and flowers…..BUT WAIT!!

Oh joyous news, the doctor has said you don’t have MS, you don’t have ALS, what you have is anxiety, well, just anxiety….oh believe me there is a BIG difference.  You have got out of jail free!  The doctor has examind you thoroughly, he has taken your history, he knows the patterns, he has seen people with MS and ALS and you are not one of those.  With a skip and a step you are on your way, same time next year doctor, yep, no worries…so with a happy heart and an increased vigour you are off out of the surgery door to continue with your life that had been on hold up to then.  MS, ALS how could you be so silly eh?

…and then it begins!  Right, the doctor said this is anxiety, I’m not anxious though, why do I still have these symptoms if I’m not anxious….something just isn’t right here.  The more you think about it the more it seems obvious, hold on, I saw the doctor on Friday afternoon, I bet he was just thinking about the weekend and wanted to get rid of me.  I’m sure that the doctor should have done more tests than he did you know, crikey, I’m sure when I told him the numbness was down just the one side he didn’t listen to that, that bit is crucial and he never heard it.  Hold on, this freakin eye twitch is getting even worse and I’m not even anxious, where is the telephone?  What is that doctors number?……welcome to the loop!!

If any of the above seems familier to you, believe me, you are not alone…as strange as it may seem the fixation on being convinced you have a neurological condition after being told that you are in actual fact suffering from anxiety in very common.

Firstly, you need to realise that both MS and ALS are rare disease’s.  Not only are they both rare disease’s but they also tend to effect spefic groups based on ethnicity, age and sex so we are talking about rare disease with partial excluding factors.  In contrast, anxiety is an incredibly common and debilitating condtion that effects people both physically and mentally. 

Anxiety is generally percieved to be a mental condition, when we are anxious we are anxious in our head and this can kick in the flight or fight syndrome which in turn causes the physical reactions.  These reactions are generally thought to be a racing heart and palpitations, sweating, increased adrenaline etc etc.  Now, this is all well and good but how does this fit in with those symptoms that mirror MS etc so effectivly.

I personally believe that the reason most people fail to be believe that their symptoms are being genrated by anxiety is because the concept of anxiety is never actually expalined sufficently.  A large number of doctors will often expalin to you that you are suffering from ‘just’ anxety and this usage of the term ‘just’ is supposed to make us somehow feel reassured.  The problem is that this has the opposite effect, how can a ‘just’ something cause all these real physical symptoms.  If anxiety is effecting me mentally how can it make me twitch, buzz and go numb?

For some people anxiety will surface in the tradional panic attack, much seems to be written on this side of anxiety and this is not what we are concerned with here.  For a sizable group of people when anxiety starts to manifest itself physically it is through physical sesnations that effect various aspects of our nervous system.  This is why the sensations of this physical anxiety so closely mirror the symptoms of a condition such as MS, they actually effect the same part of the body, now, here is the crucial and all important difference, the symptoms of MS are caused by an organic condition which whilst treatable is irreversable and the physical sensations of anxiety are caused by the mind and are of course reversable. In short,  you have to understand and accept that the mind can actually generate these physical sensations.

Whilst for many people physical anxiety can strike out of the blue, I am of the opinion that for the vast majority of people anxiety starts to become physical after whay could be many years of bad stress and anxiety management.  You may not have even noticed this.  We all have an anxiety threshold and the majority of people will probably never approach the blow off point, yes, a sudden and severe stressor could take someone right over the point from the baseline (think Post Traumatic Stress Disorder & Conversion Disorder etc) but most of us operate at an anxiety level that our bodies can handle.  The problem is that if we stress ourselves constantly over a period of time, we do not allow our thermostat to reset and one sunny day something will happen, some stressor which can be a bad or even a good event and which we may not even realise the significance of will push us over the limit and it is at this point that our anxiety will effect us physically and more often than not impact on our nervous system.

This also happens to bring us to another crucial factor and what for many is the paradox that holds us back form accepting the anxiety diagniosis, how the hell can this be anxiety when I am not anxious?  It makes no sense to me!
What we need to realise is that once we have crossed the anxiety threshold no matter what we do we have to surrender ourselves to our mind and body and accept that we are now operating to a timescale that WE CANNOT CONTROL!  We can think we are being as cool as Fonzie but we need to accept that the damage whilst reversible  has been done and it is just a case of closing the stable door after the horse has bolted.  Our body is now in control of us and the physical sensations will only stop when our body and mind are sufficently recovered.

It is at this point where we commit the ultimate folly, do we do as the experts suggest and sit back and realx and float through this stage?  Of course not, we do the total opposite, we monitor our body for every twitch and interpret this as a sign of a misdiagnosis, we become hypervigilant, paranoid, self absorbed…this behaviour just creates more and more anxiety and we do not allow our body and mind the time necessary to recover….we are, in effect, pouring gasoline on the fire and expecting it to go out.

If you read this forum you will find a variety of posts that will offer you suggestions as to why you are suffering from the physical sensations of anxiety.  Some people will advocate medication, some Cognitive Behaviour Therapy etc etc but what you will realise is that there is no one right way.  I am truly of the belief that recovery is all about acceptance and learning to respond to fear correctly but how we do this is very much an indvidual thing.  It could well be that you have issues with GAD and you can see how patterns realting to that disorder resonate with how you currently feel about your health, for example, note how both MS and ALS are diseases with which we lose control of our bodies.  It could also be that you have issues with OCD, traits such as reassurance seeking and body and symptom monitoring could suggest this.  There may well be suggestions that you could be sufferring from elements of depression, there is as school of thought that believes that the mind will somatise physical sensations when there are aspects of your life that your unconcious is unhappy with etc.

I hope this has helped if you have just visited here convinced you have MS etc and you are feeling scared and confused.  You may have noticed I have not mentioned anything specific about MS or ALS and that is because there is no reason to...you do not have those.  Your doctor has told you you are suffering from anxiety and therefore you are in the right place.  Refrain from researching about diseases you do not have and instead concentrate on dealing with what you have today.  Of course, what you have today doesn’t guarantee you won’t have MS or ALS tomorrow and if that thought fills you with fear use your time here wisely and believe me, it becomes a lot more bearable.
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Offline Xalatimo

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #1 on: August 16, 2008, 10:12:57 AM »
"Of course not, we do the total opposite, we monitor our body for every twitch and interpret this as a sign of a misdiagnosis, we become hypervigilant, paranoid, self absorbed…this behaviour just creates more and more anxiety and we do not allow our body and mind the time necessary to recover….we are, in effect, pouring gasoline on the fire and expecting it to go out."

Well put.  I think this thread is going to help a lot of people.

"Of course, what you have today doesn’t guarantee you won’t have MS or ALS tomorrow and if that thought fills you with fear use your time here wisely and believe me, it becomes a lot more bearable."

Much of anxiety has to do with fear of the unknown and inability to focus on the present.  You really do have to have the mindset that you were healthy yesterday, you're healthy today, and you're probably going to be healthy tomorrow.  You can't be sure of what tomorrow brings -- but if you're content either way and just focus on what you do have in the present, it becomes much easier.  "Yesterday I didn't have MS.  Today I don't.  And tomorrow -- well, I probably won't.  But if I did, I'd deal with it."  That's my mindset -- not only with MS, but with all disorders.  The people who just simply don't care are often times the happiest people.  Like pan mentioned, you don't have MS.  You have a condition that makes you think you have MS, and that condition is what need to be worked on.  In reality, could you have MS?  Yes.  Could you also get hit by a bus?  Yes.  Is it helpful to worry about these things?  No.  Life should be about living not worrying about dying. 

People with MS seem to understand this concept.  Montel Williams has MS and seems to be doing just fine.  I met an old lady who had MS and was in a wheelchair.  She was one of the happiest ladies I have ever met, despite her infliction.  I couldn't help but think how inspirational she was.  I'd be willing to bet that this lady, who actually has MS, is in better shape than the majority of people who only worry about possibly having MS.  So assume you don't have MS, but realize that if you did, you'd still be able to live a meaningful life.  And who knows, a cure may be on the horizon.  In the end, it's not worth the worry.  Spending an entire lifetime worrying about having something like MS or ALS, to me, is just the same as being dead.
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-X-

Offline wannabfree

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #2 on: August 16, 2008, 12:55:13 PM »
Pan, this was wonderful. Thank you for taking the time to write this for everyone. It's incredibly giving of you and I know it will be extremely helpful.

P.S. Like the new signature. I think that I will adopt a similar outlook! 
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...a work in progress...

Offline allyboo2

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #3 on: August 16, 2008, 01:13:50 PM »

The first thing that must be realised is that NOBODY on an internet forum can ever diagnose you or truly give you any reassurance that you do not have these conditions.  Should anybody experience any signs or symptoms that are new to them they should ALWAYS approach their doctor in the first instance in order for these to be examined. 

Excellent advice, but I will say that it can be embarrassing to go to the doctor for every strange little twitch, palpitation or ache.  In the case of having "new" symptoms, we can always find a NEW symptom.  I would suggest that symptoms that don't go away when you're distracted, that appear to worsen or that seem to stick around for more than a few weeks warrants a doctor visit.  

I say this as one who went to the doctor for every lump, exhaustion, twitch and dry mouth and got the proper diagnosis of anxiety.  

I also say that as one who suffered a brain stem stroke and was diagnosed by that same doctor as anxiety.  The difference was that I KNEW something was really, really wrong because I have EVERY symptom of having had a stroke, because my headache wasn't the average headache but was the worst of my life.  The numbness wasn't sort of a vague tingling, but a completely inability to feel.  The dizziness wasn't just sometimes, it made it impossible to stand.  The blurriness wasn't "sort of", I saw two of everything and had to close my eyes.

Here's what I've learned:

1)  I learned the difference between symptoms that are vague, that are related to anxiety and come and go vs. having a LOT OF DEFINITE NON-ANXIETY TYPE SYMPTOMS that can't be ignored.  If you're having vague symptoms like twitching and you Google it and THEN become convinced something is wrong, wait a week or so and see if the twitching is still there.  If you're having a group of new symptoms that you haven't had before, see your doc just to be safe.

2)  If you are having symptoms that AREN'T attributed to anxiety and they aren't going away or are worsening, see your doctor.  If the doctor says it's anxiety and the symptoms aren't the usual anxiety symptoms, it's ok to get a second opinion.

Quote
Much of anxiety has to do with fear of the unknown and inability to focus on the present.  You really do have to have the mindset that you were healthy yesterday, you're healthy today, and you're probably going to be healthy tomorrow.  You can't be sure of what tomorrow brings -- but if you're content either way and just focus on what you do have in the present, it becomes much easier.  "Yesterday I didn't have MS.  Today I don't.  And tomorrow -- well, I probably won't.  But if I did, I'd deal with it."  That's my mindset -- not only with MS, but with all disorders.  The people who just simply don't care are often times the happiest people.  Like pan mentioned, you don't have MS.  You have a condition that makes you think you have MS, and that condition is what need to be worked on.  In reality, could you have MS?  Yes.  Could you also get hit by a bus?  Yes.  Is it helpful to worry about these things?  No.  Life should be about living not worrying about dying.

Very well said.  No one is guaranteed perfect health and eventually, we'll all age.  But I don't want to waste my health worrying about WHEN I'll get older or sick.  That's worse than a serious diagnosis, in my opinion.   Xal's right.  Let's say you DO get sick.   Research shows that people who get a chronic illness learn to cope and are often just as happy as those who are completely healthy.  When I had the stroke and things were uncertain about my outcome, I was actually a lot calmer and more at peace than I was in my anxiety.  In fact, they're probably a lot happier than we are.  So who's really worse off ?  
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"Man. I went to the doctor the other day. All this guy did was suck blood out of my neck. Never go to see Dr. Acula." - Mitch Hedberg

Offline Pan

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #4 on: August 16, 2008, 01:41:36 PM »
Hi allyboo2

TBH, the reason I decided to knock this thread up was to offer a bit of advice to any newcomers who come here with a specific health anxiety concern, namely the fear of MS.  The thing is it quite a common concern for new members and I thought a thread like this could be used as good referal point instead of the same information being constantly reposted.

I take on board your point about the problem with constant doctor visits and I think I sort of address that this can be problematic a bit later in the post but as a starting point, for a newcomer,it is vital that in the first instance they get a doctors opinion on the sensations they are experiencing.  I was not writing this thread for long term health anxiety sufferers, I wanted it to strike a chord for those new visitors here who may have just started to get these specific sensations and be somewhat confused and fearful of them.  I feel it would be very irresponsible of me to state that I think somebodies sensations are anxiety based when they have not had this confirmed by their doctor.  To accept the anxiety diagnosis you have to believe it and the medical diagnosis is the first step.

With this in mind, I often see posts on here from newcomers who provide a list of symptoms/sensations and ask for advise and reassurance about specific diseases and yet many of these people have not actually sought any medical advise at all.  I would ALWAYS suggest to that person that the first port of call should be a doctor who can offer that person an accurate diagnosis, should that diagnosis be of an anxiety disorder I think it is then that we can then offer advise and guidance.

Of course, we are well aware that Health Anxiety can quickly develop into frequent doctor visits in the hope of gaining reassurance and I am in total agreement with you that this needs to be addressed.   I would like to think that a thread like this would actually have the opposite effect for newcomers as it provides the information that this is a common worry and that once you have actually seen the doctor and had the anxiety diagnosis you should then accept this and concentrate on this rather than the disease that they fear.
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Offline allyboo2

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #5 on: August 16, 2008, 02:50:44 PM »
Quote
With this in mind, I often see posts on here from newcomers who provide a list of symptoms/sensations and ask for advise and reassurance about specific diseases and yet many of these people have not actually sought any medical advise at all.  I would ALWAYS suggest to that person that the first port of call should be a doctor who can offer that person an accurate diagnosis, should that diagnosis be of an anxiety disorder I think it is then that we can then offer advise and guidance.

Of course, we are well aware that Health Anxiety can quickly develop into frequent doctor visits in the hope of gaining reassurance and I am in total agreement with you that this needs to be addressed.   I would like to think that a thread like this would actually have the opposite effect for newcomers as it provides the information that this is a common worry and that once you have actually seen the doctor and had the anxiety diagnosis you should then accept this and concentrate on this rather than the disease that they fear.

Very well said.  Yes, I definitely agree that someone who's never been diagnosed with health anxiety should see a doctor.  The definition of Health Anxiety/Hypochondria is someone who still believes they're sick after being told by a doctor that they're healthy.  I see what you were saying and completely agree.   

I should probably rephrase my advice to this (and this is just my 2 cents...not a medical opinion.)

If you haven't seen a doctor about your symptoms, see a doctor.   

If you HAVE seen a doctor about the symptoms but are still convinced you have a disease, it's ok to get a second opinion. 

But if you have been diagnosed with health anxiety and have vague symptoms that point to anxiety, I believe (and it's ok to disagree) that you can wait a few days and see if you're still noticing the symptoms before you call.
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"Man. I went to the doctor the other day. All this guy did was suck blood out of my neck. Never go to see Dr. Acula." - Mitch Hedberg

Offline marc

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #6 on: August 16, 2008, 04:09:32 PM »
Pan,
  Another informative and excellent post.

Marc
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If you're going through hell, keep going.
Never, Never, Never, give up.

Offline Pan

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #7 on: August 19, 2008, 07:55:19 PM »
Bumped for jesshoo37660.
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Offline SuperJew26

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #8 on: August 20, 2008, 01:15:11 PM »
Great post!
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Offline Pan

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #9 on: August 24, 2008, 03:30:02 AM »
Bumped for Oceanminded et al.
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Offline Pan

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #10 on: August 26, 2008, 04:07:25 AM »
Bumped for rl7007 et al.
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Offline sda

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #11 on: August 28, 2008, 09:38:23 PM »
Well said Pan!  You told my story!  And the story of everyone here!  Sounds exactly right!  You have helped so much here...THANKS! 
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Offline bimmergal

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #12 on: September 03, 2008, 05:41:20 PM »
Wonderful first post..
but why is it,  we automatically think we have MS or ALS?   Are the symptoms of anxiety that closey related?    I know I get muscle twitches,  or pulsing feelings throughout my body and have now for 2 months...  and I startle easy..  feel tired,  weak etc.. but I also know I am very anxious and have numerous panic attacks..
BUT WHY do we always think of those ailments????

INFO??

hugs..
~L
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Offline worrywart85

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #13 on: September 06, 2008, 04:23:47 PM »
Very, very helpful post.  I wasn't worried as much about MS but autoimmune diseases.  Now I just have to wait until Friday to go back to the doctor and get my blood test results. 
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Offline anxious girly

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Re: A Thread for Newcomers Worried about Multiple Sclerosis (MS)
« Reply #14 on: October 06, 2008, 11:58:11 AM »
hello pan  :action-smiley-065: i am new here your post caught my eye well im not havin any of those symptoms now but i do get them once in a while .my doctor wont send me for an mri as he said it is only feeding my very obvious anxiety  :dazed: i am terrified of ms ,heart attack as those are my main symptoms neurological and heart related .i just wanna say a huge thank you for taking time out to post this as it has quelled my fears for now and i will use it as a calming tool when those symptoms come back ,love to you :sign0092:
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