Now officially playing the waiting game. How to stay sane?? Any advice appreciated!

[Marie19]

I saw my neuro yesterday after months of strange symptoms (peripheral neuropathy, nerve pain, headaches, vision issues, you name it...) that were first diagnosed as Guillain Barre syndrome.

She is very concerned that I may have MS and has scheduled me for VEP and a spine MRI - in six weeks time. She wouldn't prescribe me anything to treat the symptoms in the meantime so here I am basically surviving on ibuprofen. I am becoming increasingly anxious and depressed which as you all can imagine is really not helping things.

I have no idea how I am going to get through the next six weeks. I am currently living in a foreign country, thankfully with my partner but have no real friend circle to confide in or take my mind off things. And I can't even drown my sorrows as booze just makes the symptoms worse!

My neuro seems to think MS is a real possibility. I don't know whether to adopt (or at least try to adopt) a head in the sand attitude until the test results - or to prepare myself for what happens if they come back positive. A lot of things would have to change - to start with, I'm a "digital nomad" freelancer, not ideal for someone with a chronic condition.

I know that obsessing (and feeling angry with myself/the doctors who misdiagnosed me/life's unfairness in general) over an illness I may not have is not constructive and will just make things worse. At the same time I don't want to give myself false hope.

I know that a few weeks of uncertainty is not much compared to what a lot of you have been through, but I would really appreciate any advice on how to deal with this. I want to be brave, but I'm not in a good place right now...

Thanks in advance.

[CaroleK]

Hang in there, Marie19

Your post made me think back to the waiting game I had when going through the diagnosis process. I know this may not help, but it did help me. I kept thinking, while I was waiting for my results (mine was an MRI and I didn't have to wait an excruciating 6 weeks! You certainly have my sympathy there!) that it could be worse. Try, if you can, to think of it that way.

I am not trying to minimize your fears and anxiety (I had them, and still have them three plus years later) but I try to focus on all the good things I have in life. An absolutely wonderful husband. Two beautiful, kind, empathetic boys. A supportive family. Good friends. I know it must be very hard for you living abroad and going through this as many friends and family members are far away from you but I hope they'll be there for you for emotional support as you wait.

If it is MS, it is disappointing, but it could be worse. Please try to stay positive and please, please advocate for yourself. Push to get an MRI sooner than later if you can and to move up your follow up appointment. Before 1992, there really wasn't anything to help with MS. Now, there are many options out there. There are many drugs to slow down the progression of the disease. Stem cell treatment (with chemo) is showing amazing results for relapsing remitting MS. Research ALL your options. We are all stronger than we think we are but sometimes we don't realize it until life throws us a major curve ball. I wish you all the best, Marie.

[22cyclist]

It is difficult. I find myself in this situation when waiting for my JCV test to come back as I am on Tysabri. The best way I have learned to deal with it is to forget about it. Sure I have tons of symptoms, some could be attributed to PML, but some could just be MS, or not MS. So I just try not to think about it every single second or it would drive me crazy! Sometimes with symptoms its mind over matter. You just have to sound them out, literally sometimes. Loud music, good movies, sleep is a really good way to get away from it, and if you have MS, sleep is no problem. Get outside and plant some flowers, go see an old friend. Anything to take your mind off of your symptoms. The good news is that these annoying symptoms with your legs and arms and headaches will not kill you.

When your testing comes back you will know more. No need to worry now, if your testing comes back negative, you will have worried for nothing. If it comes back positive, it is what it is-worry or not, and we will be here for you. So either way, worrying is pointless.

Talk with your doctor about your anxiety, you might need medication to help calm yourself down.

Take care, feel better.
Let us know how your testing goes, OK?
Lisa

[Marie19]

Thank you so much for the kind words and good advice ladies.

I am definitely working on getting my tests moved forwards (i.e harassing the radiology centre) and will try not to go too crazy in the meantime...

All the best to both of you

[Marie19]

Cervical spine MRI ok... Does that mean anything?

So my incessant harassment of the medical centre paid off and I managed to get both my MRI and my follow-up appointment moved forward (Note to fellow limbo landers: being persistent and weepy can really pay off!).

The MRI was this week and contrary to my expectations there was a doctor there who went over the results with me. He didn't know my history but was able to tell me that my cervical spine was lesion-free.

A relief obviously, but given that I suffer from upper & lower back pain and what feels like muscle tightness in my legs and torso I'm wondering if a neck MRI will actually be able to tell my neuro that much? Wouldn't a complete spine scan have been more appropriate?

For the record, I have had two brain MRIs three months apart that showed two small unenhanced lesions, consistent with MS but with no apparent changes in the interval. Is a negative cervical spine MRI enough to rule out "dissemination in space"?

These are obviously things that I will discuss with my neuro at my follow-up appointment at the beginning of next month, but I'd be interested to hear any insight on this.

Thanks as always,

Marie

[SNOOPY]

Hello Marie19,

He didn't know my history but was able to tell me that my cervical spine was lesion-free.

That's great news!

I'm wondering if a neck MRI will actually be able to tell my neuro that much?

A Cervical Spine MRI is of the neck.

Wouldn't a complete spine scan have been more appropriate?

That decision would be best left to your Neurologist to make. The most common MRIs for MS is the brain and Cervical spine, although some with MS do have MRIs of the Thoracic Spinal cord.

http://www.mayfieldclinic.com/PE-Ana...m#.U3384nlOWvI

[Marie19]

Thanks Snoopy! Yes, I'm relieved that this one is clear at least.

I was under the impression that symptoms below shoulder level were often caused by lesions in the thoracic spinal cord, though I may be getting mixed up.

[SNOOPY]

I was under the impression that symptoms below shoulder level were often caused by lesions in the thoracic spinal cord, though I may be getting mixed up.

With MS, lesions on the cervical spinal cord can cause problems from that point down.