Diagnosis (potential MS trigger)

[DoxieMoxie 313]

Hi everyone,

It is with great hesitation that I actually even write this post, because I realize that this is a forum for people with HA and I don't want to unnecessarily trigger anyone.  However, I have gotten to know so many of you over the last few months that I feel it would be an injustice not to give you a little update on my situation.  Bottom line, I've just recently been diagnosed with MS.

As many of you know, my HA over the last year has really focused on fear of ALS.  Lots of generalized twitching, perceived weakness, buzzing, vibration, weird feelings, etc.  After a basic neuro exam and a normal brain MRI, my PCP assured me that I did not have ALS and that MS was unlikely, but ultimately referred me to a neurologist, who, as it turns out later, specializes in MS.  She likewise believed, based on the normal brain MRI and clinical exam, that there was no evidence of MS (and very decisively dismissed ALS).  My symptoms were so generalized and all over, and almost certainly caused by anxiety.

I recontacted her late in the Fall due to a few more specific symptoms that surfaced: (a) I started getting pretty consistent tingling in my left arm only (I've had tingling all over and in different places before, but it would come and go); (b) I noticed an electrical shock sensation running down my back and to the left leg when bending my head forward; and (c) whereas hot baths always used to help with my anxiety, I found that they made my tingling a lot worse.  The dr was not that concerned about the tingling, but felt that the electric shock sensation (which turns out to be something called L'Hermitte's sign) warranted a cervical/thoracic spine MRI.  On that MRI, they discovered some lesions indicative of MS.  However, at that point, they could not formally diagnose it, because of the strict criteria.  She felt fairly confident that it was what I was dealing with, although it was a highly unusual presentation (no brain lesions, sensory symptoms only, other vague symptoms, etc.).

Then, not long before Christmas, my vision became blurry in my left eye.  Vision returned to normal within a week or 2 (thank goodness), but evoked potential testing earlier this month confirmed optic neuritis and demyelination of the optic nerve.  With 2 separate areas/attacks, my neuro made the formal MS diagnosis.  And that's pretty much where I'm at.  I've started disease-modifying medication, which I can take in oral form, and no transfusions necessary at this point.  My neuro feels that, given the relatively late onset in mid-30s and only sensory symptoms, I seem to have a very mild form of the disease, and although the disease is unpredictable, she is cautiously optimistic that it will remain that way.

Weirdly enough, I have very little anxiety about the whole thing, which is highly ironic given my HA.  It's never the stuff we fear that get us LOL.  I feel like I am in really good care, the disease is relatively treatable with an essentially normal life expectancy, and at least it is not ALS .

A last note for the anxious: please don't think you have MS just because you have tingling, numbness, vibration etc.  As I alluded earlier, my neuro was generally very unimpressed by those generalized symptoms, and she still feels that a lot of my generalized symptoms were attributable to my HA and not the MS.  Neuros have very specific things they look for.  My presentation was also especially unusual given that I did not have any brain lesions, which confused the early diagnostics.

Anyway, hope to see everyone around the forum from time to time, and thanks again for all your support.       

 

[bin_tenn 1252]

Thank you for sharing the story, although it's unfortunate. Also, thank you for adding the clarification note at the bottom. It's inevitable that it will likely trigger some, but I personally feel like it's worth sharing. Especially since you've been active in this community. As you said, at least it isn't ALS.

Funny how the mind works, huh? When you're facing a real issue, the brain knows and anxiety takes a back seat. I felt that with my AFib episode a few years ago, once the initial panic wore off. I felt great, despite being in the hospital and actively still in afib. One key difference in each scenario is that one (the "diseases" created by anxiety) is imaginary, and the other (the true diagnosis) is very real. No matter how prone you are to anxiety, the mind still KNOWS, whether you sense it or not, when something is real or imaginary.

I know someone with MS, and she leads a fairly normal life. She has some pretty bad days, in that she experiences some strong symptoms ("side effects") of MS, but everyone has bad days - even perfectly healthy people. Otherwise, she has no issues. All is well.

I wish you the best of luck, and I hope you can find relief for any symptoms that may arise due to MS.

[DoxieMoxie 313]

17 minutes ago, bin_tenn said:

Thank you for sharing the story, although it's unfortunate. Also, thank you for adding the clarification note at the bottom. It's inevitable that it will likely trigger some, but I personally feel like it's worth sharing. Especially since you've been active in this community. As you said, at least it isn't ALS.

Funny how the mind works, huh? When you're facing a real issue, the brain knows and anxiety takes a back seat. I felt that with my AFib episode a few years ago, once the initial panic wore off. I felt great, despite being in the hospital and actively still in afib. One key difference in each scenario is that one (the "diseases" created by anxiety) is imaginary, and the other (the true diagnosis) is very real. No matter how prone you are to anxiety, the mind still KNOWS, whether you sense it or not, when something is real or imaginary.

I know someone with MS, and she leads a fairly normal life. She has some pretty bad days, in that she experiences some strong symptoms ("side effects") of MS, but everyone has bad days - even perfectly healthy people. Otherwise, she has no issues. All is well.

I wish you the best of luck, and I hope you can find relief for any symptoms that may arise due to MS.

Thanks, Bin.  I appreciate your kind words.  Yeah, I really internally debated sharing this, because I know it is a susceptible audience.  But I just felt it was something I ought to share if I were to continue participating on this forum.  I still have anxiety and OCD, and will no doubt need the occasional advice/encouragement from here, plus I enjoy contributing/helping others here.

[Holls 1496]

Doxie!!! Love and hugs!!! I'm glad you posted. I love you being active here on the forum you always get wonderful advice. You have helped me tremendously many times. 

We are all here for you. ??

[DoxieMoxie 313]

14 minutes ago, Holls said:

Doxie!!! Love and hugs!!! I'm glad you posted. I love you being active here on the forum you always get wonderful advice. You have helped me tremendously many times. 

We are all here for you. ??

Thanks Holls! You are the best.  

[NervUs 140]

Doxie, I can't believe it!! You have lived through our worst nightmare, and you sound so calm and so strong!! I am *proud* of you for living your strength and staring this down. I truly wish you the best, and the mildest case, and please come back for support if anxiety ever flares.

[Iugrad91 501]

Doxie, I am glad you shared your story with us. I don't have ALS/MS worries so perhaps my view will be different, but I think your post can be reassuring to all of us. As you said doctors know what to look for and when they hear something that they know could be a problem they will follow thru and do testing to confirm or refute what they suspect. Doctors are not blowing us off, minimizing our symptoms, or anything like that when they tell us a symptom is due to anxiety. They KNOW what to look for and what can be attributed to anxiety or what could be something more serious. We use the internet to get our medical information. Doctors most certainly do not. They attend seminars and conferences, read and write research articles in medical journals, take classes, and stay on top of the most current information available. Wen they tell us that twitching is not the first symptom of ALS it is because they have seen thousand of patients and know what questions to ask and how diseases present. That is why doctors tell us not to Google.

I'm glad you are not feeling anxious about your diagnosis and that you are being well cared for. We are all here for you if you need us!

[DoxieMoxie 313]

14 hours ago, NervUs said:

Doxie, I can't believe it!! You have lived through our worst nightmare, and you sound so calm and so strong!! I am *proud* of you for living your strength and staring this down. I truly wish you the best, and the mildest case, and please come back for support if anxiety ever flares.

Thanks, NervUs.  That means a lot.  And yes, I am actually amazed at myself over how well I've taken the whole thing   For me I think it just shows again how anxiety differs from a real disease.  I would spend hours stressing about ALS symptoms and on ALS forums; by contrast, I feel OK, and while I have joined an MS forum for information/advice, I haven't been obsessively spending time there.  So weird.  As my neuro reminded me, just because you have MS does not mean that you don't still suffer from anxiety and related symptoms!

[DoxieMoxie 313]

1 hour ago, Iugrad91 said:

Doxie, I am glad you shared your story with us. I don't have ALS/MS worries so perhaps my view will be different, but I think your post can be reassuring to all of us. As you said doctors know what to look for and when they hear something that they know could be a problem they will follow thru and do testing to confirm or refute what they suspect. Doctors are not blowing us off, minimizing our symptoms, or anything like that when they tell us a symptom is due to anxiety. They KNOW what to look for and what can be attributed to anxiety or what could be something more serious. We use the internet to get our medical information. Doctors most certainly do not. They attend seminars and conferences, read and write research articles in medical journals, take classes, and stay on top of the most current information available. Wen they tell us that twitching is not the first symptom of ALS it is because they have seen thousand of patients and know what questions to ask and how diseases present. That is why doctors tell us not to Google.

I'm glad you are not feeling anxious about your diagnosis and that you are being well cared for. We are all here for you if you need us!

Great post, and I'm glad you find my post reassuring.  

My twitching has actually reduced significantly, and for me, most definitely correlates/comes and goes with my anxiety levels.  Not even just negative anxiety, but really any stress or excitement.  I've noticed it happening even when I'm excitedly nervous about something.  My neuro says some MS patients do complain of twitching, but the jury is still out whether it is actually an MS symptom or whether it is a symptom related to secondary anxiety/stress.  

[liv07 92]

Hi Doxie. Wow, I am so sorry to hear of your diagnosis, but I am in AWE of your attitude. It's amazing how HA fear is so different to how we respond when there is an actual condition to deal with. Anxiety takes a back seat and allows our rational mind to drive for a while. I hope you continue to have a mild course and we are all here if you need an ear xo

[DoxieMoxie 313]

14 minutes ago, liv07 said:

Hi Doxie. Wow, I am so sorry to hear of your diagnosis, but I am in AWE of your attitude. It's amazing how HA fear is so different to how we respond when there is an actual condition to deal with. Anxiety takes a back seat and allows our rational mind to drive for a while. I hope you continue to have a mild course and we are all here if you need an ear xo

Thanks, Liv.  How have you been doing?

[liv07 92]

Up and down, peaks and toughs. I have been dealing with some real health issues and the HA is still a ferocious beast ... xx

[Holls 1496]

49 minutes ago, liv07 said:

Up and down, peaks and toughs. I have been dealing with some real health issues and the HA is still a ferocious beast ... xx

Hi Liv. Every thing ok? I'm sorry to hear something is going on. We are here for you. Hugs. 

[DoxieMoxie 313]

17 hours ago, liv07 said:

Up and down, peaks and toughs. I have been dealing with some real health issues and the HA is still a ferocious beast ... xx

I'm sorry to hear about your real health issues.  At least you can rest assured that you do NOT have ALS.  

[liv07 92]

Thanks, Doxie. Unfortunately, that best has still got me in its grasp ... baby steps

[Holls 1496]

3 minutes ago, liv07 said:

Thanks, Doxie. Unfortunately, that best has still got me in its grasp ... baby steps

Hugs Liv I'm having an als set back right now too. Argh. I'm about a week from my menstrual so I think that's why. I'm so so so tired of this I can scream!!!!!!!!!!!!! Baby steps is right.. I'm at a year this week and I'm still not over this crap. 

[liv07 92]

5 minutes ago, Holls said:

Hugs Liv I'm having an als set back right now too. Argh. I'm about a week from my menstrual so I think that's why. I'm so so so tired of this I can scream!!!!!!!!!!!!! Baby steps is right.. I'm at a year this week and I'm still not over this crap. 

I got my period two days ago, and my anxiety was peaking!! It's definitely cyclical. I was on another HA board, and the daughter of a guy with ALS posted some stuff that tipped me over the edge. I won't even post it, because it's very triggering. But anyhow, we ended up private messaging each other and she's been a BIG HELP talking me down these past few days. 

[Holls 1496]

1 hour ago, liv07 said:

I got my period two days ago, and my anxiety was peaking!! It's definitely cyclical. I was on another HA board, and the daughter of a guy with ALS posted some stuff that tipped me over the edge. I won't even post it, because it's very triggering. But anyhow, we ended up private messaging each other and she's been a BIG HELP talking me down these past few days. 

That's good Liv!!! I still think it's not subtle.. so we need to remember that. Hugs

[liv07 92]

9 minutes ago, Holls said:

That's good Liv!!! I still think it's not subtle.. so we need to remember that. Hugs

Ah, you are on No More Panic too??

[Holls 1496]

2 minutes ago, liv07 said:

Ah, you are on No More Panic too??

 No lol. I've never been there.  Sounds familiar.  I think I have googled no more panic twitches last yr and found some info. I'm here and sometimes the als forum. 

I was just saying that every one of the people that have ALS on the forum really stress how it's not subtle. 

[liv07 92]

Ah, well, that was exactly what the comments were about, how the bulbar onset symptoms are "slight and not subtle" and "barely perceptible". I thought you must have read the thread!. I pointed out that was contrary to everything I'd read from PALS and CALS and the other person just dug in deeper, with EXAMPLES of its subtley. Can you imagine my anxiety!!

[Holls 1496]

1 minute ago, liv07 said:

Ah, well, that was exactly what the comments were about, how the bulbar onset symptoms are "slight and not subtle" and "barely perceptible". I thought you must have read the thread!. I pointed out that was contrary to everything I'd read from PALS and CALS and the other person just dug in deeper, with EXAMPLES of its subtley. Can you imagine my anxiety!!

I believe the women and men on the als forum.. from the people on the forum that started with bulbar it was not subtle.  AT ALL. 

So who was saying it's subtle? The woman who's dad has it? Or someone else?

[liv07 92]

The woman's who's dad has it. She also works with people who have it in some kind of care capacity. She has since clarified what she meant to me, but I think she was mainly backtracking. She actually said it doesn't happen overnight where one day you can do something and the next you can't, and that was a like a red flag to a bull for me, lol ...I also asked her what was she even thinking posting that on a HA thread. For pete's sake, how is that helping anyone?? Anyway, since then I've been able to pick her brain a lot about bulbar symptoms. She still insists it's a slow, gradual subtle thing though :/ But her dad has had it for 10 years, so he's already an outlier ...

[Holls 1496]

16 minutes ago, liv07 said:

The woman's who's dad has it. She also works with people who have it in some kind of care capacity. She has since clarified what she meant to me, but I think she was mainly backtracking. She actually said it doesn't happen overnight where one day you can do something and the next you can't, and that was a like a red flag to a bull for me, lol ...I also asked her what was she even thinking posting that on a HA thread. For pete's sake, how is that helping anyone?? Anyway, since then I've been able to pick her brain a lot about bulbar symptoms. She still insists it's a slow, gradual subtle thing though :/ But her dad has had it for 10 years, so he's already an outlier ...

Ya... She shouldn't had said anything especially since her dad's case sounds very very diff than anything I've ever read on bulbar. !!! I would take what she says with a grain of salt and ask yourself what would shift kicker tell me. That has become my new form of a swift kick in the butt. She would tell you Liv you do not have anything that points to bulbar no matter how much you think it does.  Do people ask you to repeat what you said? Do they ask if you are drunk??  See what I mean.. get tough tough on yourself like she would. And also your time frame is a huge part as well. Your months into this fear. 

I know we talked about this before but I hate to say this.. buttttttt If you did post on the forum and you got a no answer would you feel relieved enough to stop this fear??

[liv07 92]

Probably not, lol. I think they'd have to stick a needle in my tongue ...