MS...clean MRI....but I googled...

[Concerned-pa 17]

So as I posted, i have had tingling off and on in ny arms, legs, and feet for about a month. I also have a suspected bulging disc in my lower back, so we thought perhaps that was it. I've also experienced recent tension and spasming between my shoulders. Had a brain MRI that was clean last week, but then was reading on MS forums that it actually can take a long time after symptoms to show lesions since it's scarring. So now I'm back to square 1 and fearful of MS. I noticed today (before I looked this up or had the fear) that I'm getting a prick feeling randomly in various spots on my body that feels like debri in your clothes.

What do I need to to do? Any legitimacy in my worry?

[bin_tenn 1252]

IMO, it sounds like you need to put more trust in your healthcare provider(s) and their many years of formal education and work. It's certainly possible that some people are unfortunately misdiagnosed, or not diagnosed at all, despite various tests. For example, some people who have very recently passed a number of cardiac tests - EKG, echo, stress test, etc - can, and sometimes do, experience a heart attack or other cardiac event that typically shows warning signs during those tests.

As far as I can tell, it sounds like you could greatly benefit from researching and practicing techniques common to treat anxiety, things that are key (IMO) to overcoming such irrational thoughts and fears. Namely acceptance and mindfulness. We must accept that in life there are no guarantees. There are no promises. Not even in medicine.

A close friend of mine probably does have MS, though we're still not entirely sure. She's waiting for further testing. She had next to no symptoms a couple years ago, aside from some seemingly non-specific stuff. A brain MRI revealed a lot of "lesions." I believe she's waiting on more MRIs coming up soon in order to work toward a more formal evaluation and potential diagnosis.

MS isn't a life or death thing anyhow. It can negatively affect quality of life, but it's not terrible. I know two others who were diagnosed several years ago. They have their bad days, but more good days.

I hope you feel well soon. Please do look into and practice research and mindfulness. Meditation is great as well. YouTube and Google are both good sources for those things.

[lofwyr 215]

Folks have got to stay away from forums associated with diseases you haven't been diagnosed with. I see it all the time on the aortic aneurysm forums I am on. People come in freaked out because they have a symptom, and get more information than they need, but rarely have a symptom that even aligns with the disease. They leave in much worse shape than they arrived, everytime. And often times they manage to irritate people on the forum who have the disease, but at the same time don't understand health anxiety. I try to be compassionate with them, having both HA and an aneurysm, but most patients get really upset because they just don't get it. 

I really feel going to a support group for something you don't have or haven't been diagnosed with is more destructive to HA than straight up googling. 

And finally, you have not mentioned any symptoms I haven't had from anxiety even when not feeling anxious. I think we operate at a higher level of anxiety than most, even if we don't consciously feel it.

[Concerned-pa 17]

3 hours ago, lofwyr said:

Folks have got to stay away from forums associated with diseases you haven't been diagnosed with. I see it all the time on the aortic aneurysm forums I am on. People come in freaked out because they have a symptom, and get more information than they need, but rarely have a symptom that even aligns with the disease. They leave in much worse shape than they arrived, everytime. And often times they manage to irritate people on the forum who have the disease, but at the same time don't understand health anxiety. I try to be compassionate with them, having both HA and an aneurysm, but most patients get really upset because they just don't get it. 

I really feel going to a support group for something you don't have or haven't been diagnosed with is more destructive to HA than straight up googling. 

And finally, you have not mentioned any symptoms I haven't had from anxiety even when not feeling anxious. I think we operate at a higher level of anxiety than most, even if we don't consciously feel it.

Thanks. I wasn't posting anywhere. I just googled "Clean MRI clears diagnosis of MS" and it took me to several forums where people said they were diagnosed after years of clean MRIs.

[jonathan123 2365]

There's no problem with Google if you just use it to look up medications and side effects, etc. (Even that can be frightening!!). But we have to ask ourselves if we are any better off knowing all about some imaginary disease? Self diagnosis is very dangerous in anxiety. Let the doctors do the diagnosing. I am never surprised when someone comes up with some obscure medical term that has obviously come from Dr. Google. I ceased long ago to label myself. I take it as it comes and if any specific problem crops up I go to my GP. They are the only ones who know. I have not been to medical school for five years and done an internship so I don't dabble in things I don't understand.

There is a story about a man who went to his doctor with, as he thought, some awful disease. The doctor examined him and said Hmmmmm!!!! with a long face. He gave the man a prescription. The man was worried sick and fearful. When he got to the pharmacy the chemist smiled and said, "Sorry, I cant fill this". "Why not", said the man. "Because", said the chemist, "It says, in Latin. 'Get on with your work and your life and stop worrying about things you don't understand' "

[Concerned-pa 17]

50 minutes ago, jonathan123 said:

There's no problem with Google if you just use it to look up medications and side effects, etc. (Even that can be frightening!!). But we have to ask ourselves if we are any better off knowing all about some imaginary disease? Self diagnosis is very dangerous in anxiety. Let the doctors do the diagnosing. I am never surprised when someone comes up with some obscure medical term that has obviously come from Dr. Google. I ceased long ago to label myself. I take it as it comes and if any specific problem crops up I go to my GP. They are the only ones who know. I have not been to medical school for five years and done an internship so I don't dabble in things I don't understand.

There is a story about a man who went to his doctor with, as he thought, some awful disease. The doctor examined him and said Hmmmmm!!!! with a long face. He gave the man a prescription. The man was worried sick and fearful. When he got to the pharmacy the chemist smiled and said, "Sorry, I cant fill this". "Why not", said the man. "Because", said the chemist, "It says, in Latin. 'Get on with your work and your life and stop worrying about things you don't understand' "

I agree. I just worry about what would be causing these sensations. 

[jonathan123 2365]

But you know what's causing them. I do appreciate that its very difficult to believe that anxiety can do all these things to your mind and body, BUT IT CAN! The body is a mass of nerve endings. It has to be to regulate our temperature and  our functions in all departments. Is it surprising that the nerves begin to play up and send all the wrong signals to the various organs? The electrical impulses to the heart are affected so we get palpitations. They are harmless, but the reaction on our part is tremendous. Take it from me, and I know from bitter experience, that anxiety can play more tricks on you than you could ever imagine possible. We are fooled and bluffed into false beliefs. Once you have been checked out and told it's 'nerves' believe them. They do know, and any good doctor will know the difference between anxiety and a serious illness.

[Concerned-pa 17]

1 hour ago, jonathan123 said:

But you know what's causing them. I do appreciate that its very difficult to believe that anxiety can do all these things to your mind and body, BUT IT CAN! The body is a mass of nerve endings. It has to be to regulate our temperature and  our functions in all departments. Is it surprising that the nerves begin to play up and send all the wrong signals to the various organs? The electrical impulses to the heart are affected so we get palpitations. They are harmless, but the reaction on our part is tremendous. Take it from me, and I know from bitter experience, that anxiety can play more tricks on you than you could ever imagine possible. We are fooled and bluffed into false beliefs. Once you have been checked out and told it's 'nerves' believe them. They do know, and any good doctor will know the difference between anxiety and a serious illness.

I hope so.

[bin_tenn 1252]

It seems this feeling that we "need to know" is a large part of what ultimately gets most of us with anxiety in trouble. We always feel the need to know. We want answers, and we want them now. This is essentially useless, however, because even when we get the answers we're often found doubting, and wondering "what if these answers are wrong?"

[jonathan123 2365]

I agree bin. But what can you do? We know deep down that the medics are right, but it seems as if some want to feel anxious and upset. There is a theory, which I don't necessarily agree with, that there's some kind of safety in feeling afraid all the time. It sounds strange, but psychologically it has some merit. What happens when we get well again? Dorothy Rowe in her books talks about the 'prison of depression'. I think it may apply to anxiety also. The door is always open and the jailor is a nice old guy that helps whatever our wants. But we are afraid to go out into the world. Why? Because out there are responsibilities. Work to be done, families to be looked after and people to meet, bills to be paid. It's a dangerous place out there!!           No, better off in prison. No responsibilities there.   I wonder if this is the cause of a lot of unconscious agoraphobia.

[Concerned-pa 17]

I think for me, I have a strong feeling these are really physical and tied to something since I wasn't an anxious person up until these symptoms started.

[Jlavoie 14]

@Concerned-pa I have been through the same thing!!! And struggling to believe it’s anxiety but I’m seeing a therapist to work on such things. I had a clean mri and they say the tingling and burning sensations are idiopathic. They’ve questions fibro but I’m only 23 and don’t have all the signs of fibro so they don’t want to label me with that yet. But I still struggle every day to tell myself I’ve had a clean mri and need to move on and that sometimes people just have weird sensations or pains that mean nothing. I don’t know if this helps, but I know it always makes me feel better knowing that others are going through the same thing! Doxie moxie is an expert on this stuff and could help calm you down!  

[Concerned-pa 17]

59 minutes ago, Jlavoie said:

@Concerned-pa I have been through the same thing!!! And struggling to believe it’s anxiety but I’m seeing a therapist to work on such things. I had a clean mri and they say the tingling and burning sensations are idiopathic. They’ve questions fibro but I’m only 23 and don’t have all the signs of fibro so they don’t want to label me with that yet. But I still struggle every day to tell myself I’ve had a clean mri and need to move on and that sometimes people just have weird sensations or pains that mean nothing. I don’t know if this helps, but I know it always makes me feel better knowing that others are going through the same thing! Doxie moxie is an expert on this stuff and could help calm you down!  

Thanks! I try to tell myself to move on as well, but I never had these symptoms before. I often wonder if other people without anxiety get these sensations and think nothing if them.

[Jlavoie 14]

@Concerned-pa I think the same thing and I I really do think most people just ignore things! My boyfriend of 7 years always tells me to just stop hyper focusing and move on! He also says so many people have weird things and pains (he does all the time) he just never says anything cause he ignores it and moves on with his day. Really working on that currently but it’s hard when you always second guess! I wish you the best of luck I know how crappy it feels to go through that! 

[BrightPhoenix 78]

If you can I suggest talking to your neurologist and asking him or her if there's any types of medications you can take to calm you down.  Normally these are prescribed by a therapist, but I personally find Klonopin to help control your anxiety - if you can get your anxiety under control a lot of what you're experiencing tends to calm down with it.  I too am having MS scares myself and I know how you feel.  My neurologist is booked and I'm going to see him on the 3rd (closest date) but the "randomness" of my symptoms (some days I don't have it and other days it won't stop) makes me think anxiety myself.

Just be rest assured you're not alone.  There's another good site - nomorepanic.co.uk you can also ask there for help.  Work with your doctors to rule out "obvious" symptoms too and consider seeing a therapist in the meantime.  They can help talk it through you with CBT (cognitive behavioral therapy).

[Concerned-pa 17]

On 3/21/2019 at 2:12 AM, BrightPhoenix said:

If you can I suggest talking to your neurologist and asking him or her if there's any types of medications you can take to calm you down.  Normally these are prescribed by a therapist, but I personally find Klonopin to help control your anxiety - if you can get your anxiety under control a lot of what you're experiencing tends to calm down with it.  I too am having MS scares myself and I know how you feel.  My neurologist is booked and I'm going to see him on the 3rd (closest date) but the "randomness" of my symptoms (some days I don't have it and other days it won't stop) makes me think anxiety myself.

Just be rest assured you're not alone.  There's another good site - nomorepanic.co.uk you can also ask there for help.  Work with your doctors to rule out "obvious" symptoms too and consider seeing a therapist in the meantime.  They can help talk it through you with CBT (cognitive behavioral therapy).

Do signs of MS often stay? I know mine come and go. Here is a breakdown of the last month when this all started:

've been battling a bulging disc in my lower back since 2007 that gets irritated a few times a year. Flash back to middle of February and ai aggravated it again, but then again went to pick up my oldest one night and it put me on my knees. It felt like I really messed it up. I couldn't sit very easily for the next day. Eventually, a few days passed and all was good.


Then a few days later, I woke up with tingling in my right leg and foot. Thought nothing of it only to have it return again the next day. It was never debilitating level tingling, just subtle tingles. Then a few nights later, it started in my arms. 
That always happened when lying down and would get better after being upright.

I went to my GP who did bloodwork and an XRay and all was good except my Xray showed a straightening of my lumbar region. Then a few days later I started feeling cramping and tightness in my left bicep that would come and go. We were able to schedule a brain MRI but my insurance declined the back until I complete PT. My brain MRI back clean for everything (which can possibly rule out MS but still unsure).

In addition to all of this, I get off and on scratch or prick feelings randomly on my body like as if something is stuck to the inside of my clothes. It's nit daily, but comes and goes. Of course, I start panicking about nerves failing.

I've also noticed my right leg getting fatigued when out running around with my oldest. It never fails, but it's like it would feel after leg days when lifting and it's usually in my thiggt or just above my knee cap. This symptom plua the spasms my chiropractor notes on my back worries me about ALS. 

I do go in for an EMG on the 5th, but I can't take my mind off all of this. I know most here may say it's stress, but I honestly don't feel like this all started during a stressful time.

Any insight from people in my shoes would be great.

[DoxieMoxie 313]

Your brain MRI was clear, and thus almost certainly rules out MS.  The way you describe your symptoms (locations, patterns) just don't sound like MS either.

Your leg symptom and back spasms don't sound remotely like ALS, so please put that out of your mind.  Your sensory symptoms also totally point away from this.

Honestly sounds like some disc compression issues, very much magnified by anxiety.  

[Concerned-pa 17]

1 hour ago, DoxieMoxie said:

Your brain MRI was clear, and thus almost certainly rules out MS.  The way you describe your symptoms (locations, patterns) just don't sound like MS either.

Your leg symptom and back spasms don't sound remotely like ALS, so please put that out of your mind.  Your sensory symptoms also totally point away from this.

Honestly sounds like some disc compression issues, very much magnified by anxiety.  

Just left the chiropractor today.he had me do some strength tests and both legs and noticed that my right leg seems weaker than my left. I could do two leg squats pretty easily but when I did single-leg, it was very hard to do on my right leg. he said it was most likely due to a weakened glute muscle due to my back injury, but of course my mind simply went straight to ALS.

[DoxieMoxie 313]

24 minutes ago, Concerned-pa said:

Just left the chiropractor today.he had me do some strength tests and both legs and noticed that my right leg seems weaker than my left. I could do two leg squats pretty easily but when I did single-leg, it was very hard to do on my right leg. he said it was most likely due to a weakened glute muscle due to my back injury, but of course my mind simply went straight to ALS.

I completely understand that line of thinking, but it has everything to do with your HA and not reality.  For people with HA who fear ALS, if you mention the word weakness, they immediately jump to it.  But the reality is that weakness occurs in so so many medical conditions, such as e.g. a back injury.  On top of that, even without a medical condition, our bodies are not symmetrically strong.  You are really, really grasping at straws here  

[Concerned-pa 17]

8 minutes ago, DoxieMoxie said:

I completely understand that line of thinking, but it has everything to do with your HA and not reality.  For people with HA who fear ALS, if you mention the word weakness, they immediately jump to it.  But the reality is that weakness occurs in so so many medical conditions, such as e.g. a back injury.  On top of that, even without a medical condition, our bodies are not symmetrically strong.  You are really, really grasping at straws here  

I sure hope so. My right side is my strong side so it's odd to feel that much weakness. My only consolation is that the weakness was accompanied by burn and that I can still flex the muscles in question. Is that a good sign?

[DoxieMoxie 313]

20 minutes ago, Concerned-pa said:

I sure hope so. My right side is my strong side so it's odd to feel that much weakness. My only consolation is that the weakness was accompanied by burn and that I can still flex the muscles in question. Is that a good sign?

Yes.   

[Concerned-pa 17]

Of course I woke up this morning and lifted (lightly) and did a few one leg dips, and my right leg is clearly weak and it feels tired in the same spot (above my knee). It doesn’t go away right away which would be indicative of a true muscle injury. I googled weakness above knee, and why does MS come up as the first thing??!! I can’t stand this. I need to know why my right leg feels so much more tired all of a sudden these last few weeks. It just makes me stress so much more and think about all day. So now it’s just back and forth between MS and ALS until something gets better or a doctor can prove otherwise. I feel like I’m too far down the rabbit hole.

[Concerned-pa 17]

And I should add that there is a slight twitch in this location as well. Not consistent, but I notice it every now and then. Awesome.

[Iugrad91 501]

Why does it come up first thing? You do know how Google works, don’t you? It takes into account your past viewing history, not only from Googling but other sites you visit, so if you’ve been doing lots of research on MS it will come up first. Google doesn’t know you and in no way should the order of pages that appear in Google be taken as having any relevance. Also, DO NOT GOOGLE! You’ve seen your doc, had a clean MRI, it’s time to start practicing some acceptance and move on. Go to a physical therapist and see if they can work on your muscle injury. But the most important is to work on your anxiety and getting that under control.

[Concerned-pa 17]

1 hour ago, Iugrad91 said:

Why does it come up first thing? You do know how Google works, don’t you? It takes into account your past viewing history, not only from Googling but other sites you visit, so if you’ve been doing lots of research on MS it will come up first. Google doesn’t know you and in no way should the order of pages that appear in Google be taken as having any relevance. Also, DO NOT GOOGLE! You’ve seen your doc, had a clean MRI, it’s time to start practicing some acceptance and move on. Go to a physical therapist and see if they can work on your muscle injury. But the most important is to work on your anxiety and getting that under control.

Well technically I haven't seen a neurologist yet. I had the MRI sent to them and my GP, and got the clear from my GP. Haven't heard from anyone else. Assuming if there was anything, I would have heard. Trying to get my spine done next.