Anyone with MS and/or went through MS tests that can share their experiences with us?

[Mark G 1176]

2 hours ago, BrightPhoenix said:

Clear MRI.  I read the report - nothing.  Everything is normal.  In fact, the report confirmed the sinus issues I've been having, as it said I had inflammation around my sinuses and mucosal buildup - i.e. it confirms what my ENT found.

Neuro is suggesting both a psychologist and a doctor of orthopedics to address my legs and the twitching and nerve pains.  He thinks it may be a nerve somewhere that's pinched, but he says there's nothing up in my brain causing issues.  I'm relieved.  I think I'll start concentrating on finding the source of the twitches for my legs.  My health anxiety has gone back into 'remission" but I'm taking this as a sign to start taking care of my body more.  I lost a whopping 10 lbs over this but I expect that to come back if I don't follow that momentum.

I hope you find a cause for your leg issues, PA.  I learned way too much about this disease for my own comfort.  My anxiety is still giving me random weird symptoms (my throat gets tired if I eat big things/drink big things and my back is still hurting), but yeah, I think I have to figure out how to prevent this feedback loop from happening.  The health anxiety beast must be tamed!

Great to hear If you are unable to find the source of the twitching, try to leave it be as continued searching perpetuates the issue (especially if there is no way of finding it).  I personally had that with my tinnitus, i spent month and months trying to find the source and eventually one day just said "no more" and accepted that i have tinnitus.  I still have it but i no longer hear it as my attention is elsewhere.  The same would happen with your legs with time.

[dcamc4 7]

Hopefully I get out of this rabbit hole of MS soon...I think I had "visual snow" last night and I'm fighting not to google...I'm scared to google that it is a symptom of MS. I do think it is a symptom of anxiety...I just want out of this rabbit hole. I'm good for a few days and then I get back in it

[Heal 13]

True for me as well. I am out of it then sucked back in

[BrightPhoenix 66]

Concerned-pa, did you get to see your neurologist yet?  I think I figured out what's causing my muscle twitching issues in my legs - gonna see a orthopedic doctor in a few weeks - I think I have a bad and weak back muscles and something's going on with my spine (most likely due to years of sitting in a bad position and not getting a new computer desk or computer chair).

No health anxiety, but it *is* annoying that it's interfering with my life, but it's more of an annoyance and a determination to get past it rather than worrying endlessly about it.  I will take care of it and then try to move on.  But even without seeing a therapist my mindset has changed since I am already thinking about what the OBVIOUS causes are rather than falling into automatic conclusions that I'm not qualified to make as someone with no medical background.

I do have a followup with the neurologist but a majority of the pins and needles I've been feeling in my arms and torso are gone.  Makes me think some of my twitches are due to the bad knees I was diagnosed with in February.  It's irritating, but again, I always tell myself that it could be *far worse*.

Take care of yourselves everyone.

[Concerned-pa 16]

42 minutes ago, BrightPhoenix said:

Concerned-pa, did you get to see your neurologist yet?  I think I figured out what's causing my muscle twitching issues in my legs - gonna see a orthopedic doctor in a few weeks - I think I have a bad and weak back muscles and something's going on with my spine (most likely due to years of sitting in a bad position and not getting a new computer desk or computer chair).

No health anxiety, but it *is* annoying that it's interfering with my life, but it's more of an annoyance and a determination to get past it rather than worrying endlessly about it.  I will take care of it and then try to move on.  But even without seeing a therapist my mindset has changed since I am already thinking about what the OBVIOUS causes are rather than falling into automatic conclusions that I'm not qualified to make as someone with no medical background.

I do have a followup with the neurologist but a majority of the pins and needles I've been feeling in my arms and torso are gone.  Makes me think some of my twitches are due to the bad knees I was diagnosed with in February.  It's irritating, but again, I always tell myself that it could be *far worse*.

Take care of yourselves everyone.

I go in on Thursday. I had my lower EMG yesterday and all was clear. I do have some tarsal tunnel in my left ankle. He probed everywhere with the needle and was very thorough. When he poked into my lower back where my back problems have been for years it hurt much worse than any of the others and it hurt the entire time the needle was in.

He noted I was inflamed there but we couldn't find any nerve issues in my back or legs. Good and bad news as that leaves anxiety or MS I think.

[Mark G 1176]

11 hours ago, Concerned-pa said:

that leaves anxiety or MS I think

If your nerves are not damaged then it's highly unlikely to be MS, the damaged myelin sheath would be detected would it not?

[Concerned-pa 16]

8 minutes ago, Mark G said:

If your nerves are not damaged then it's highly unlikely to be MS, the damaged myelin sheath would be detected would it not?

I've read (I know, I know) that MS shows normal EMG and NCS. Usually doctors will order EMGs and NCS's to rule out other causes of neuropathy. The fact that mine was clear basically makes it less likely my problems are related to my back and relates to something else. What that is, who knows.

I will say my back still hurts there like it usually does when I hurr my back a few times a year.

 

[Mark G 1176]

3 minutes ago, Concerned-pa said:

I've read (I know, I know)

I don't need to say anything lol, you know.

So they have detected an inflamed area in your lower back and they have ruled out muscular?

 

[Concerned-pa 16]

10 minutes ago, Mark G said:

I don't need to say anything lol, you know.

So they have detected an inflamed area in your lower back and they have ruled out muscular?

 

They didn't rule anything out other than the doctor (DC, sooo not a neurologist) who did the test wasn't concerned at all that it was MS (because of my clean brain MRI), and he said you definitely don't have ALS, but he also couldn't find evidence of degeneration in my back. Just inflammation in my back and tarsal tunnel in my left foot.

This second doctor was awesome, though. He explained everything so thoroughly. He's just not a neurologist, so we wait untill tomorrow.

[Mark G 1176]

Ah right so a clear brain MRI, well that reduces the chances of this being MS to nearly nothing.  Excuse my ignorance if i've missed it but have you had a spinal chord scan?

[Concerned-pa 16]

2 minutes ago, Mark G said:

Ah right so a clear brain MRI, well that reduces the chances of this being MS to nearly nothing.  Excuse my ignorance if i've missed it but have you had a spinal chord scan?

Nope, I tried, but my GP said my insurance won’t cover it without progression of symptoms or after having completed 6 weeks of PT. I’m hoping if it’s necessary, the neurologist will be able to order one.

I know it may be the last piece of the puzzle, but also concerned of what it might find. Still holding out hope we can find an obvious answer to all of this.

[Mark G 1176]

Ok, well, looking at the facts as i understand them.  So far, there has been no evidence whatsoever of MS with only one test left to do to entirely rule it out.  This test is only ever performed to patients with more progressive symptoms and positive evidence gathered from other tests.  So then input the probability of this being MS against other back issues and inflammatory causes and you're looking at really really low probability.  I doubt your anxiety is going to let go of the spinal chord scan as that is where all the fear is pointing at the moment and you're mindset is locked on to it.  Having MS throughout my family and through the experiences i have seen and what i've learnt, i highly doubt that your symptoms are MS causal.

[Concerned-pa 16]

2 hours ago, Mark G said:

Ok, well, looking at the facts as i understand them.  So far, there has been no evidence whatsoever of MS with only one test left to do to entirely rule it out.  This test is only ever performed to patients with more progressive symptoms and positive evidence gathered from other tests.  So then input the probability of this being MS against other back issues and inflammatory causes and you're looking at really really low probability.  I doubt your anxiety is going to let go of the spinal chord scan as that is where all the fear is pointing at the moment and you're mindset is locked on to it.  Having MS throughout my family and through the experiences i have seen and what i've learnt, i highly doubt that your symptoms are MS causal.

Thanks. I'm not as dead set on MS as I was. I feel like other than the sporadic tingles, I don't have much to correlate to it at this point. 

[MsLLL 410]

26 minutes ago, Concerned-pa said:

I don't have much to correlate to it at this point. 

Hmmmmm....... Concerned-pa, what else could it be correlated to? 

[Mark G 1176]

14 minutes ago, MsLLL said:

Hmmmmm....... Concerned-pa, what else could it be correlated to? 

Exactly, it's a worst case scenario and a belief created from it.

[Torontogirl 73]

It’s been awhile since I’ve been in this site, but I wanted to add to the thread by saying I was tested extensively for MS and other disorders in the past. All test results were negative. So, my doctor said that since my symptoms didn’t progress and the test results were negative it was probably anxiety related. I tried to believe him and probably did actually believe him at times. A number of years have passed and I still get these prickly painful sensations on my legs. The strange thing is I do feel I’ve put these symptoms behind me and moved on with life., but they persist. I’m really not anxious about it any longer, more just saddened. There are long periods of time I probably even felt indifferent about it. I’m wondering, given this info, do you think practicing pain management would be the way to go? My concern with going this route is that I’m admitting it really isn’t anxiety induced, but rather a physical disorder. I don’t think I have MS, not really sure what it is. 

[Heal 13]

This discussion is enlightening and I have bookmarked this thread

Now that I have developed HA and various health scares I have been focusing incessantly over tingling/preceived weakness/ spasms feelings etc but I think I can remember having them as early as I was a teenager and when times were simpler (90s was a better place with not a ready internet and smartphone access). Regular tingly sensations or pains would easily be ignored. Had I had a serious issue, things would have been escalated by now (God forbid)? 

[MsLLL 410]

59 minutes ago, Heal said:

This discussion is enlightening and I have bookmarked this thread

Now that I have developed HA and various health scares I have been focusing incessantly over tingling/preceived weakness/ spasms feelings etc but I think I can remember having them as early as I was a teenager and when times were simpler (90s was a better place with not a ready internet and smartphone access). Regular tingly sensations or pains would easily be ignored. Had I had a serious issue, things would have been escalated by now (God forbid)? 

People with anxiety are easy to influence. We have a vivid imagination,  unfortunately for us that imagination tends to be on the negative side of things. It's our responsibility to not fall prey to google or the media when in the middle of it. Think of it like an addiction, your exacerbated anxiety wants it's fuel, fooling you into thinking once you know you will have relief. But it's the opposite. Take the fuel away from your anxiety! 

[MsLLL 410]

3 hours ago, Mark G said:

Exactly, it's a worst case scenario and a belief created from it.

Yeah, it's classic anxiety thinking. We have all been there concerned pa! 

[Heal 13]

57 minutes ago, MsLLL said:

People with anxiety are easy to influence. We have a vivid imagination,  unfortunately for us that imagination tends to be on the negative side of things. It's our responsibility to not fall prey to google or the media when in the middle of it. Think of it like an addiction, your exacerbated anxiety wants it's fuel, fooling you into thinking once you know you will have relief. But it's the opposite. Take the fuel away from your anxiety! 

Thank you so much. You guys are my lifesavors

[BrightPhoenix 66]

On 4/17/2019 at 5:54 AM, Heal said:

This discussion is enlightening and I have bookmarked this thread

Now that I have developed HA and various health scares I have been focusing incessantly over tingling/preceived weakness/ spasms feelings etc but I think I can remember having them as early as I was a teenager and when times were simpler (90s was a better place with not a ready internet and smartphone access). Regular tingly sensations or pains would easily be ignored. Had I had a serious issue, things would have been escalated by now (God forbid)? 

This is exactly why I made this thread.  To make it like a one-stop shop to "compare notes" when people come here with symptoms.  There's a lot of threads with MS concerns and I wanted people to jump into one "main thread" where people could share notes and offer experiences.  I've been having issues with my back muscles being weak since my health anxiety flared up the past two months, but it's pretty obvious that points *away* from MS.  Plus I had a clear brain MRI - clean as a whistle (except for my sinuses), at this point I have to come to grips with the fact that I haven't been taking great care of my body or myself.  I'm in my 30's and I have to treat my body right in order to stay illness-free.  I'm not in my 20s anymore.  Sitting at home being scared is only going to make things worse for myself.

If you're younger than me you definitely should be doing what you can to treat your health anxiety.  Your young years are way too rare to be spending them letting anxiety stop you from enjoying life.  As Mark has said, don't avoid it - take it HEAD on.  Approach it like the protagonist of a novel approaches a giant monster with nothing to fear.

It's hard - I know.  It's a constant battle.  Don't be afraid to get help, you don't have to deal with this alone.

[MsLLL 410]

On 4/17/2019 at 7:56 PM, Heal said:

Thank you so much. You guys are my lifesavors

And the other way around. We need you too! 

[LilyLabVA 56]

On 4/20/2019 at 3:20 AM, BrightPhoenix said:

This is exactly why I made this thread.  To make it like a one-stop shop to "compare notes" when people come here with symptoms.  There's a lot of threads with MS concerns and I wanted people to jump into one "main thread" where people could share notes and offer experiences.  I've been having issues with my back muscles being weak since my health anxiety flared up the past two months, but it's pretty obvious that points *away* from MS.  Plus I had a clear brain MRI - clean as a whistle (except for my sinuses), at this point I have to come to grips with the fact that I haven't been taking great care of my body or myself.  I'm in my 30's and I have to treat my body right in order to stay illness-free.  I'm not in my 20s anymore.  Sitting at home being scared is only going to make things worse for myself.

If you're younger than me you definitely should be doing what you can to treat your health anxiety.  Your young years are way too rare to be spending them letting anxiety stop you from enjoying life.  As Mark has said, don't avoid it - take it HEAD on.  Approach it like the protagonist of a novel approaches a giant monster with nothing to fear.

It's hard - I know.  It's a constant battle.  Don't be afraid to get help, you don't have to deal with this alone.

Hi any chance you are in US? East coast? Would love to find a neurologist and MRI center as great as you said yours was. 

[BrightPhoenix 66]

8 hours ago, LilyLabVA said:

Hi any chance you are in US? East coast? Would love to find a neurologist and MRI center as great as you said yours was. 

I'm from the US but unfortunately I'm not East Coast.  If you have Facebook friends who are understanding maybe you could ask those folks for recommendations?  You know where I got my recommendations?  From Yelp.  I also found a GREAT Dermatologist through Yelp!  Found one that had tons of positive reviews and I was impressed.

I don't want to upsell my neuro - my health anxiety still puts doubts in my mind about my neuro since my symptoms *are still here*, but I can manage them provided I continue to take care of my mental health.

After my neuro gave me a clear MRI I repeatedly asked him if he's absolutely sure I didn't need any tests.  No spinal MRI, no spinal tap, no blood tests or EMG?  And he said no.  I've been struggling for the past couple weeks to accept that as I continue to have some issues with my back and the pain in my knees/legs, but I'm willing to give it time because I've traveled to way too many doctors these past few months.

I need to start taking care of my body and pull myself out of this reverie.

[BrightPhoenix 66]

Sorry for the double post, folks.

How's everyone doing?  Personally even though my MRI of my brain showed a 100% clean scan I still have that HA beast in the back of my mind saying something is going on because I still have this funny right side facial numbness that's around my lip (always feels like I'm "drooling even though I'm not") and for the fact that I'm still getting this perceived weakness.  I'm trying my best to move past it but a part of me wants that spinal tap done to make 100% sure.  My neuro said if I have a clear head MRI it should generally be good but man... health anxiety really refuses to listen to reason.  You all know how it is.

A part of me is wondering if the perceived weakness I'm having has anything to do with my kidneys now - noticed foamy urine 2 weeks ago and my mind has been focused on it ever since - been getting weird back and side pains and I sometimes get this "kicked in the groin/crotch" feeling when I cross my legs.

sigh, health anxiety never wants to go away does it.  It just always stays on the sidelines ready to taunt you when you think you've escaped it.