Please help!

[Tammy051978]

Hello all...
I was hoping for some advice. I'm sorry this is long...

Background:
Its fair that I start by saying that I had a 2nd trimester loss in august.  I mention this because since then I've been having problems with depression/anxiety.  

Secondly, I have had a pinched nerve in the right side of my neck for the past 1.5 years.   Finally got into phys therapy in October and it started helping about a month in.  Until then I was having MAJOR anxiety about it, to the point that I actually got a script for antidepressant/anti anxiety.  Something I've never done before.

Ok, so my current issue:


A few days after my pinched nerve on the right side started feeling better I woke up one morning and the left side of my face was numb.
Scared me half to death.
Went to p.t. later that day and she said I had likely slept wrong and that my neck muscle was in spasm.  She did some massage, taped it, and told me it would be gone within a week.

It did start to lighten up some within that week.  Then...I went to bed one night, and woke up two hours later with my cheeks(both sides) on FIRE.  They burned SO SO badly.  It only lasted about two minutes and then went almost all the way away.  

I freaked, called my dr the next morning.  He said that he thought it was likely an allergic reaction to the antidepressant I had started 4 days prior. When we mentioned trigeminal neuralgia(thanks google ugh) he said he didn't think it was likely because the way it presented, but he couldn't say for sure.

He said that it could be a number of things, including MS.  And that he wanted to do an MRI.  I'm still waiting to get in for that because it was first denied by my insurance.  He also mentioned a Vit B12 deficiency but when he looked at my blood work I'd had recently, he said it looked good.

I'm also prediabetic if that matters.

These are my symptoms:

Since then, the strange sensation has yet to stop, and it's been about 2.5 weeks.  I haven't had that insane burning again but the light burning/pins/needles/strange sensation has never gone away completely.  There were a few days where it felt better but not gone 100%.

Also, it has gone down into both my arms(started about 2 weeks ago).  About a week ago, I started feeling it in my thighs, but very mild.  Also is in my neck/shoulders/scalp.  It's pretty much constant.  Can it be constant in MS for this long?

Myy right forearm and left eyelid has been having muscle twitches.  But I know my eye twitches in stress.  And my right forearm has given me problems since the pinched nerve.  Yesterday however it was twitching so badly that now it's sore.:(

As far as triggers the only thing I've noticed is that the burning sensation definitly gets worse if I get hot, or in the sun(but I hate the heat anyways) but oddly not in the steaming hot shower.  I've been taking about 10 hot showers a day just to calm my nerves.  And when I get super anxious I can feel it sorta "surge"

I'm worried 100% of the time.  I *think* I could live with a diagnosis of MS better than TN, the "suicide disease" but it still terrifies me.  I have two young children, and my worst fear in my life is either A)dying, and leaving them B)becoming severely handicapped and not being able to care for them.

I'm at the point where I can't tell if the anxiety/fear is causing the symptoms or if the symptoms are causing the anxiety.  When I had a few days that the burning was better, I in turn felt better.  I know I'm not imagining it.  In fact I feel it creeping into my arms right now.

I'm not taking anti depressants right now, and try very hard to stay away from the anti anxiety.  I went out yesterday and bought 3 types of calming teas, St Johns wort and B12.  

I feel like I'm about to lose it.  I don't go back to the dr til Friday and it feels so far away.  Still no clue on when the MRI will be and then will have to wait who knows how long to see a neurologist.:(

I'm desperate.  Can anyone help me, and tell me what they think about all this.  
(I also posted this on the anxiety board, but no help as of yet:( )

[Tammy051978]

Sarah~
Thank you.  I am just so terrified.  I could hardly sleep last night.  The words Trigeminal Neuralgia kept floating through my head.  Sadly, I'm not getting any responses on the TN board.  I am just so scared that this is going to take me away from my kids.  I know I'm not good at all with pain and all I can think is suicide disease, which is the last thing I would want to do:(
My husband has been great, waking up with me all night.  But he can only give so much comfort since he doesn't know what it is either.  

I am trying to see the glass half full.  The overwhelming intensity that it could be something so horrific is just so much to handle.  I have to "talk myself down" with the cognitive behavior thinking that the counseler has taught me, but I have to say, it barely keeps me ok.

I did start on Zoloft yesterday.  I am hoping it kicks in sooner than later altho I know it can take a while.  I also have Ativan prescribed but I rarely take it as I'm scared of it being so addictive.

I'm so scared...:(

[Sparkysarah]

Hi Tammy

You have had some very thoughtful and insightful replies and I just want to add a few words. I am so very sorry to hear about the loss of your baby son and no-one can understand what this feels like for you as everyone's grief is individual. I am also glad that you have sought help from a grief counsellor (I am a bereavement counsellor in UK). I would just say that I find it helpful to think that the loss never will go away as your baby was your beloved child who you will never forget, but that over time you will learn to live with this loss.

I hope that you get answers about your health and that the MRI of your brain helps. At least you know you have bulging disks as this is one piece of the puzzle, but not the whole picture. Try and keep an open mind and not to let your anxiety and worry get out of control. If you feel your mind and irrational thoughts are spiralling and getting bigge and bigger, think positively and instead of seeking negative answers look for positive evidence that whatever is worrying you may not be the case. Not sure if this makes sense to you but it is a CBT technique where out thoughts, feelings and behaviour are all interlinked and it you can change the thoughts, it will help the feelings and hence how you act.

Take care and keep us posted on your progress

With love and support

Sarah :)

PS Ref. the "annoying" comment..try and let is just pass through you and not go deep down inside you..she obviously has NO IDEA what you are feeling and that is her problem that she has not understood you or given you the professional empathic support that you deserve.

[Tammy051978]

Sadie~
Thank you.  Could you please help me find the information on that? I can't seem to come up with anything.  I know that my levels were slightly "elevated" at the time, and the dr said it was nothing to worry about.  I have a copy of the blood work from then if you would like me to get it.

I went to my dr yesterday(1/7) and she said that the MRI results did say bulging discs but not significant enough to cause these symptoms.  She basically didn't have an answer BUT threw out Trigeminal Neuralgia.  She made it sound soooo simple, like it was having the flu.  She actually used the word "annoying". I think my husbands and my jaw dropped.  Really, annoying?  The suicide disease?

She said that wouldn't be her first guess, but it is a possibility.  Also MS.

She is referring me to a neuro and wants a brain MRI as well.

I'm a wreck, I don't know what to think:(

[sadie405]

I'm so incredibly sorry to read about the loss of your baby. It's such an awful loss, and not one that is well understood or dealt with by most of our society.

Were you given a reason for the miscarriage/stillbirth-- i.e. were you by any chance tested for things such as antiphospholipid antibodies or clotting factors? I ask because aPls are known for causing 2nd trimester loss and stillbirth, and for causing neurological symptoms that can strongly mimic MS.

Best,
Sadie

[jensequitur]

"stay on top of this, be very involved in your own care"  

Hey, that's good advice!  Especially if you're being considered for a neurological disease.  You really have to do a lot of research and vet your neurologist.  There's lots of them out there who don't really treat the patient, they treat the disease.  And even more who don't know how to treat the disease, and treat the patient with disdain.

I know it's scary, but it's even scarier to realize that you've been receiving substandard care.

[Tammy051978]

Thank you~I have an appt in the a.m. with her.  Hopefully they will have faxed over the MRI scan by then.  Also hope that I can get into a neuro asap.

In some ways it was relieving...in other ways...not so much. haha

[wiggles94]

Hi Tammy,

I really thing that Tech was wrong to discuss any of this with you.  He has scared you - and possibly for no reason.  These people are not trained to read these like the radiologists are.  I would call your doc tomorrow and discuss all your fears with him/her.  No need to add more worries to your plate!

Take care.

[Tammy051978]

I went this morning for an MRI.  It was supposed to be of the brain and spine, but they only had it ordered for the cervical spine.
Afterwards the tech touched my shoulder and said  something like "stay on top of this, be very involved in your own care"  Scared the hell out of me!  I left the office, texted my husband then walked right back in there.
I asked to speak to him and told him that I would not be able to sleep tonight if he didn't tell me what he saw.
He said he was sorry he scared me but that he did find bulging discs(not sure how many).  I asked if he found any lesions for MS(had already told him why I was there earlier), and he said no, nothing obvious at all.  He said they would have the experts look at it but that he didn't see any lesions.  
He said that the bulging discs can definitly cause the symptoms I'm having, even in the face.

Now I'm worried about two things..that it could still be MS, just no lesions in neck.  And that the discs could effect the trigeminal nerve so badly I could get the "suicide disease".

[Lulu54]

Tammy,
The B12 problem can create all sorts of problems with tingling, numbness , etc.  I would tackle that first and see it it doesn't help to make you feel better.  There are so many scarey things out there to worry about, please take MS off your list for now.   Just keep working toward feeling better and don't forget to be kind to yourself and your husband.

hugs, L

[wiggles94]

Hi Tammy.

I am very sorry for what you have been going through, and for your loss of your son.  I too lost a baby 12 hours after birth, so I understand what you are going through.  It's great that you are seeing a grief counselor.   I'm glad that is helpful to you.  When I lost my daughter, I went to a support group for a short time, and then I did a lot of reading on grief.  That helped me a lot to know that what I was feeling was a normal part of the grief process.  Be very patient with yourself in dealing with your grief.

This is a time in your life to be very kind to yourself and seek nurturing wherever you can find it.   I am wondering if your symptoms are more related to hormones and anxiety.  But, it's good that you are not ignoring them, and seeking help.  I hope that your MRI turns out OK and that as time passes, so do your symptoms!

Wishing you the best, and make sure you let us know how things go.  This is a wonderful site full of supportive and intelligent : ) people!

[Tammy051978]

Thank you SO much to both of you!  

I have been seeing a grief counseler since about 1.5 weeks after losing our son.  She's been a big help actually.  But I know I'm far from over it.  I think I will be able to work through it eventually but it has definitly thrown me for a loop.  Every since then I have more fear than ever before.

Lulu~Thank you thank you thank you.  What you just said makes a LOT of sense!  Of all the things my husband and I have researched, we have never read that about the bilateral part!  That brought me such relief.  And while I realize it could still be possible, that fact definitly helps!

I am hoping/praying that it's something minor such as a B12 deficiency.  

Anymore information is always, always welcome.

THANK YOU again:)

[Lulu54]

Hi Tammy, and welcome to the MS forum.  Your concerns are very real, and as mooksmom said, Anxiety is a real diagnosis, too.

Let me start by telling you how sorry I am for your loss.  A 2nd trimester miscarriage must be so emotionally tough.  If you haven't already, you might consider seeing a therapist once or twice at least to talk through your loss.  

There are a few things that you put here as your symptoms that don't match up with MS.  99.99% of the time the symptoms don't appear on both sides of the body.  MS is a disease of the central nervous system.  To have bilateral problems you would need symmetrical lesions, which would be very,very rare.

The heat of all those showers would most probably bother you if this were MS since you said you seem to be affected by the heat.

Having that "fire" feeling in both of your cheeks makes me think of something like hormone imbalance.  It probably isn't TN.

All this said, I hope you will continue to work through this with your doctor and continue to search for the answers of what is wrong.  

Good luck and let us know if we can be of more help.

be well, Lulu

[mooksmom]

Do you have a Psych MD? Anxiety is a REAL diagnosis and can make you VERY sick...in many ways. I believe you might start there and take her/him your post.
Stay OFF the internet! It's a great tool, but not for anxiety ridden people.