MS fear back help please

[Jlavoie 14]

Hi guys.. been about 2 years since I’ve been on. I have in the past about 4 years ago had tingling in my feet then a burning skin sensation in my thighs which is quite uncomfortable. Lasted a bit and then went away- happened briefly again 2 years later but went away once again. Now 2 years later I’m pregnant and having this same flare up, tingling feet and burning skin sensation in my thighs. I had a clean brain and cervical spine mri in Jan. 2019 neurologist and dr just diagnosed me with bfs and just over sensitive nerves. Well now I have this flare up while pregnant I’m panicking. Could they have missed something or should I feel relieved that it only happens like every few years and never seems to be worse and does go away. I have worked so hard on my health anxiety but obviously being pregnant now I am anxious something will get worse etc. I’ve never had like any weakness, loss of use of anything etc. just these odd sensations. Please help calm me down! 

[Jlavoie 14]

Anyone??

[Bobnnat 495]

Hi JL. Certainly being pregnant brings out the hormones, so be on the lookout for false alarms and HA flare ups. The brain and spinal MRI are the gold standard to diagnose MS, and you had those feelings before 2019 so you’re A-OK. Plus those are commonplace symptoms of anxiety. Congrats on the pending new arrival!

[Jlavoie 14]

53 minutes ago, Bobnnat said:

Hi JL. Certainly being pregnant brings out the hormones, so be on the lookout for false alarms and HA flare ups. The brain and spinal MRI are the gold standard to diagnose MS, and you had those feelings before 2019 so you’re A-OK. Plus those are commonplace symptoms of anxiety. Congrats on the pending new arrival!

Thank you so much! I am trying so so hard not to spiral again as not good for me or the baby. I was thinking maybe things are just hormone related especially since I’m now pregnant! Plus I am trying to remind myself if and if In the rare chance it could be ms tho I know it’s even more rare for it to not be picked up on an mri- it wouldn’t make sense that the same exact symptoms have come and gone a few times since and before my mri. I guess it just makes me wonder what is it then if I can go two years with not a single problem then bam same stuff all at once! 

[Jlavoie 14]

@Bobnnat ok I called my gp he said I’ve had a work up and not worried unless new symptoms… now I feel like the left side of my face feels numb but it’s not I have complete feeling, no slurring of speech etc by my left arm is the one I think with a pinched nerve… please help calm me down I’m freaking out. 

[DoxieMoxie 316]

Jess,

I’m so sorry to hear you are anxious about MS again. I received your PM and decided to respond here. As you may recall, I actually have MS and suffered badly from HA before my diagnosis. 
 

You describe very non-specific symptoms. As you know, tingling and numbness can be caused by all sorts of things, including nerve compressions during pregnancy and anxiety.  MS doesn’t usually present all over like you describe, bc it tends to correlate with locations of lesions. Also, the fact that your symptoms started before the MRIs and are now recurring due to pregnancy stress/anxiety argue against a true neurological cause.  
 

By all means, see your GP if you are concerned, but believe what he or she tells you. I’m not a dr but not really concerned about anything you report given the big picture. 

[Jlavoie 14]

@DoxieMoxie your response means more than you know. I’ve done well for two years and mows not the time to go back to where I was. Though I know ms is not a death sentence I don’t know why I hang on to it. Yes it all occurred before the mri and I do not have weakness/ trouble doing anything. I guess the thing I find odd is it leaves for So long then randomly comes back. But I suppose if it were ms most likely things would be getting worse and I wouldn’t go back to feeling normal? Gp said as long as no new symptoms which it’s not then he has no concerns since I had a work up. 

[DoxieMoxie 316]

3 hours ago, Jlavoie said:

@DoxieMoxie your response means more than you know. I’ve done well for two years and mows not the time to go back to where I was. Though I know ms is not a death sentence I don’t know why I hang on to it. Yes it all occurred before the mri and I do not have weakness/ trouble doing anything. I guess the thing I find odd is it leaves for So long then randomly comes back. But I suppose if it were ms most likely things would be getting worse and I wouldn’t go back to feeling normal? Gp said as long as no new symptoms which it’s not then he has no concerns since I had a work up. 

I would definitely follow your GP’s advice, which I think you deep down know makes sense. 

If you actually had MS and you received no tx for years, you would likely have had more attacks/symptoms. What you describe is WAY more consistent with anxiety.  
 

And yes, MS is not a death sentence at all (not that there’s any evidence you have it). There are more aggressive forms, but the treatments have advanced so much. I currently don’t have any significant symptoms and have been on my treatment regimen for several years, with no further lesions. Fingers crossed it stays that way. I was lucky in that most of my issues were sensory and not motor deficits. 
 

I tell you all this to make this point: I can honestly say that I suffered way way more from my HA than I ever did from MS.  Commit to getting your HA under control; it will be the best decision you ever make, regardless of whatever actual diseases will ever come your way. 

[Jlavoie 14]

@DoxieMoxie once again, thank you so much for your time. I woke up feeling less anxious and working on getting back to focusing on what’s important- my babe! Sometimes just a little reassurance from you all on here helps on top of my doctor. I will let my feet tingle away and my legs feel sensitive because like many times before it goes away! It’s an annoyance for sure and sometimes the fact that I just have no clue what causes it fuels the anxiety. Clearly I am able to live my normal life however so I need to move on right now. I hope you continue to do well on your journey! 

[Jlavoie 14]

Okay I do have an appt on Monday to follow up with GP but my left ear and jaw feel like they are so cold like have been out in the cold for hours- I still have feeling etc but it’s pretty uncomfortable- they are normal body temp to the touch. the rest of my symptoms have subsided. Could this be nerve related to the pinched nerve in my left arm or something more serious? Anyone experience this? 

[MARC 425]

I think there is a good possibility that they are both related to the pinched nerve in your left arm. 

[Jlavoie 14]

@MARC I spoke with the nurse to get me through the weekend she said same thing- especially where my other symptoms have gone away And this has kinda come and gone this week- it’s not painful just odd sensation. She wasn’t worried. It’s strange but I just have to remind myself of the bigger picture- regardless there’s not much of a way all of this is anything major as it has been 4 years and nothing gets worse and goes away. Burning is gone. I would assume most major neurological problems don’t work that way. And she also said pregnancy hormones might be at work as well. 

[MARC 425]

The husband of a woman I grew up with has had MS for some time and he has gotten progressively worse. He wobbles now when he walks and needs to drink fluids when he eats as he has some difficulty swallowing. However, he can still drive and swims for exercise.  On a positive note, my wife's friend's sister has had MS for many years and is pretty much symptom free. 

[DoxieMoxie 316]

10 hours ago, Jlavoie said:

Okay I do have an appt on Monday to follow up with GP but my left ear and jaw feel like they are so cold like have been out in the cold for hours- I still have feeling etc but it’s pretty uncomfortable- they are normal body temp to the touch. the rest of my symptoms have subsided. Could this be nerve related to the pinched nerve in my left arm or something more serious? Anyone experience this? 

I doubt they are related in the way you think. The nerves serving the areas are different.  
 

Our bodies can generate all sorts of strange sensations at times, especially during pregnancy or due to anxiety, but even just at normal times. I wouldn’t spend a lot of time analyzing it. Most of the time we don’t really know what causes a sensation, and most often, we don’t need to do.  
 

If something really persists or becomes very bothersome, you see your GP and let them investigate if they think it’s necessary.  In your case, though, you have a lot of symptoms in different places jumping around. And as I explained above, that is seldom how MS or anything serious manifests.  
 

Be kind to yourself and stop the analysis :) 

[Jlavoie 14]

@DoxieMoxie this is exactly what my husband said! He gets weird sensations all the time and ignores them unless they never go away then he would get is addressed. I think just the hormones have increased my anxiety and am having a harder time not analyzing. But I totally agree with you and know you are right. :) I think just chatting with my doc on Monday will help keep me moving in the right direction and put this set back behind me. Once again, I hope you know it is incredibly helpful for you to respond to me, I know doctors are who to listen to and I trust him very much but sometimes hearing from people who go through the same thing or in your case have some good knowledge on an actual disease that I probably don’t have is so helpful for me to move forward. Makes me feel like I’m not alone in this whole health anxiety journey!

[MARC 425]

One time I was at my GI physician's office, and I thought I had a specific problem. He then said to me the following. Marc, you're a CPA, right? I said yes. He then said to me, do what you were trained to do and leave the diagnosing to me. 

[Ironman 139]

On 10/22/2022 at 8:44 AM, Jlavoie said:

@DoxieMoxie this is exactly what my husband said! He gets weird sensations all the time and ignores them unless they never go away then he would get is addressed. I think just the hormones have increased my anxiety and am having a harder time not analyzing. But I totally agree with you and know you are right. 🙂 I think just chatting with my doc on Monday will help keep me moving in the right direction and put this set back behind me. Once again, I hope you know it is incredibly helpful for you to respond to me, I know doctors are who to listen to and I trust him very much but sometimes hearing from people who go through the same thing or in your case have some good knowledge on an actual disease that I probably don’t have is so helpful for me to move forward. Makes me feel like I’m not alone in this whole health anxiety journey!

Try to remember what he says so you aren't taking on unnecessary anxiety.  That's not good for either of you.

[Jlavoie 14]

So it is still lingering… my whole left side feels numb but I do have sensation… some days it’s worse than others and today it’s bad. I keep also getting like pains randomly at the top of my head or near my left eyebrow.. but they last a second and go away and it’s not every day. No vision changes, slurred speech or facial dropping. All my other symptoms have gone. Followed up with my pcp and he said he was going to refer me back to neurology so waiting to make an appt for that. OB nurse said facial symptoms can happen in pregnancy especially at the end and I’m 31 weeks now. It’s not as common but can happen so they weren’t concerned. I’m really really struggling right now and this is when I should be the most excited! 9 weeks until I meet my son but I’m so focused on and I going to be dealing with an autoimmune disorder or something right when I just want to enjoy my first born?! I know it’s life and probably nothing sinister but any words of encouragement would be so helpful as I just can’t get it out of my head. 

[Ironman 139]

Are you really sure that this is "autoimmune"?  

I get numb by sitting a certain way.  

Remember what your doctors have said.

[Jlavoie 14]

@Ironman no I’m not sure if anything more my mind running to like MS. It’s not really numb it’s like the left side just feels tight and weird and numb feeling is the only way I can describe it. But lots going on with hormones etc so I’m sure it’s nothing just having a bad health anxiety flare.