Neuro appt on the 21st - What to expect?

[SueFern]

Hi everyone,

I am new here and not sure at this point if this is where I need to be.  Hopefully, I will get answers soon, but from reading a lot of your posts it sounds like I am in for a long journey!

Here is my story:

A week before Thanksgiving I started getting numbness and tingling in my left pinky finger.  Gradually over days it spread to my hand and up my arm across my left chest to my abdomen and I would wake up with my legs feeling heavy.  I went to the doctor and because I had a headache too (which I get often) he thought it was a complicated migraine.  

He put me on steriods and sent me for an MRI of the brain and cervical spine.  The steriods made me feel awful but slowly tingling and numbness went away execpt for my left hand, however I started feeling some tingling in my right finger tips and feet.  The MRI showed one small white spot on the brain which my doctor said it was probably from my headaches, nothing looked like MS.

Now however, it is two months later and I have LHermites when I lower my neck I get tingling electrical sensation all down my legs to my feet, and sometimes in my rib cage and abdomen area (which feels really weird).  My feet still get numb and tingley and I am still having issues with my left hand.  It gets worse when I exercise and with heat.  Sometimes my hands and feet even swell.

I was worried because I got my flu shot on 11/9 and started having these symptoms 1 1/2 later.  So I was concerned about Guillian Barre, but from what I have been reading that spreads fast and I would be in the hospital by now.  My doctor has no idea what is going on with me, mainly because I am not having any motor issues and my reflexes are fine.  He has me on Naproxen twice a day, which sometimes I think helps and other times not at all.

My concern is, since I already had my MRI...what is the neurologist going to do?  I am hoping that she will send me for one of the whole spine.  Also, how common is it to get the Lumbar puncture done?  I really want that because that is the only way to detect if it is Barre.

All I know is that I am getting tired easier.  I feel worse in the morning, in the evening and after I exercise.  
Sitting and driving in the car is sometimes hard because my feet get so numb and I get the electrical feelings down my legs to my feet.  I am not in  a lot of pain just really uncomfortable and worried!!

Any advice would be appreciated!  Thanks to all of you!  : )

[jensequitur]

Hmm...  Let's see...  It sounds like your question about MS protocol wasn't answered.

MS protocol involves scanning the brain with sequences T1, T2, and FLAIR.  The slices are smaller (I don't remember how small, but I want to say it's 3 mm instead of 5.)  And the MRI is done with and without contrast - they scan you, stick a needle in your arm and administer gadolinium, and then scan you again.

I feel like such a downer sometimes.  I would like to reassure you and say this flare won't take any time at all to go away, but honestly, it may take as much as two years before you start to feel normal.  It took a long time for me to feel better, and I never have felt 'normal' again.  Important things are to get plenty of rest, drink plenty of water.  Treat it like you have the flu.  Don't wear yourself out and don't be sedentary, either.  

[Lulu54]

Sue, good luck with the next visit.  Yes, write down everything but remember they will only have time for the short list.  So prioritize what is bothering you the most and put those at the tope of the list.  If the doctor asks, then give the top three or so and just tell the doctor there are more .

To back up a minute to the symptoms vs diagnosis thought- I was pondering that because it wasn't sitting right in my brain, and so I asked Quix when I talked with her yesterday.  She said that whatever problem  the patient brings to the doctor is the symptom and whatever the doctor names the symptom  is the diagnosis.  

And then she added that often the symptom and the diagnosis are the same. And she said the diagnosis is not necessarily a disease.   She said a patient can talk about the symptom such as  an ingrown toenail.  And the doctor will then name the problem - diagnosis - an ingrown toe nail.  

I told her the question centered around L'hermittes, to which she said it would be both - the sx and the dx.  I hope that helps....  Lulu

[SueFern]

Hi Shell,

No I am still about the same.  I go to the neuro on Friday.  My doc forwarded all of my results from the MRI and bloodwork.  I am also going tomorrow to pick up the MRI films incase the neuro wants them as well.  I need to write down everything I am feeling.  I know I am going to forget to mention things once I am there.

Thanks,
Sue

[sllowe]

Sue -
Any resolve in symptoms? When do you go back the neuro, and to prep did you gather up all the report findings? It's going to be important to describe those things you are experiencing and let the doc put a name to what is or is not going on.

CoBob - hmmmm not so sure about that dx definition you mention - I sure was dx'd w/L'hermittes, among other things.

-Shell

[SueFern]

Barre is associated with Flu vaccines especially with the Swine flu vaccine which is combined this year with the regular flu vaccine.  The more my symptoms are progressing and lasting I really doubt that Barre is what is going on.  However, it was something I was very scared of at first and spinal fluid is the only way to get a diagnoses.

I rather not have a Lumbar Puncture.  I am just scared and desperate for answers.  Hopefully my Neuro will ease my mind with other tests first!

[COBOB]

The flu shot is a killed virus.  I didn't think GBS was associated with killed virus vaccines.  You can not be dx'd with L'Hermitte's...it is a symptom, not a disease.  I don't see how a lumbar puncture can rule out GBS.  GBS is a peripheral disease and MS is a CNS disease.  There is still a fairly high percentage (10%+) of MS patients with a negative Lumbar Puncture for OCBs.  

Given that you have L'Hermitte's as a symptom, I'd go towards a CNS cause, so an MRI of the brain, c-spine and t-spine would come after the neuro exam. L'Hermitte's is due to a white matter lesion on the sensory columns of the cervical  or thoracic cord.  

[msisbs]

I am new here too but I just wanted to add that before I let someone start stabbing me with needles in dangerous places I would push for an MRI of the rest of your spine and the other less invasive tests, like VEP. The spine MRI's are what made the difference in diagnosis for me and they are a lot less scary than a spinal tap.

[SueFern]

Thanks Shell!

The only reason I wanted the Lumbar puncture is just to absolutely rule out Barre.  I am just so concerned that all of my issues happened shortly after getting my flu shot.  I know I most likely don't, but it is always this worry in the back of my mind.

No I haven't been dx'd with lhermittes, but from everything I am reading it makes sense that is what is going on with one of my issues....every time I put my head slightly down I get a tingling rush or surge type of feeling all down my legs to my feet.  Sometimes I feel it in my abdomen or rib cage area.

Thanks again!

[sllowe]

Hi there,

Adding on a big welcome to you too. Sorry for what you are going through this all can be so scary, and not knowing the source leaves you just dangling w/no answers.

Good advice provided above -  I would like to add that you should expect the doctor to take a good look at your history, he/she should ask you question about your past, in order to best steer the workup.

Lumbar punctures are not general rule at this stage, and if it were me and doctor brought it up this early in I'd be concerned.  Has the doctor dx'd lhermittes?

You can prep for your appt. by having all of your imaging and lab results at the ready for your appt. And, you can bring someone along with you to sit back and take some notes if you feel it will serve your well. Also, don't expect immediate answers as to the source of the problem.

At the end of the appt. if the doc is good, you'll at least have had a thorough neurological exam, a thorough look at your history, and then hopefully some next steps towards finding the culprit.

Thanks for joining us. Hope we can be a good source of info and support for you.
-Shell

[SueFern]

Thanks for both of your replys.  I did have some blook work done to check for Lupus, RA, and Thyroid levels and that came back fine.  What do they do differently with the MRI to make it MS protocol?  I will make sure to talk to the neuro about it.

Also, how long does a flare up usually last?  I woke up this morning feeling so stiff and numb....I can't wait to feel like myself again.   I hope I will someday!  I just try to keep moving.  I don't know if that is making it better or worse though.

Thanks again!

[wiggles94]

Hi and welcome.  Sorry you are here, but it sounds like you are in the right place.  THis is a great forum with lots of support and knowledge, and many are going through the dx phase - trying to figure out what is going on with their body!

Sounds like your docs are trying to help you - another MRI following the MS protocol would make sense if you are continuing to have symptoms - brain and spine -

Lumbar punctures help with the dx sometimes - but sometimes they are negative, and you can still have MS.  It may help to rule out other things.

Also - are your docs doing any other testing to look at other things this may be?  I know there are many mimics of MS that need to be ruled out in the dx process.

As you noted - these kinds of symptoms can take a long time for the docs to figure it out.  Just take good notes on all your symptoms - get copies of all reports, tests and MRIs - you need to be on top of it all - and be your own advocate as you move forward.  The more organized you are in knowing what's been done, test results etc - the easier it will make it for you and your docs.  

And use this site as a resource. There is great info on the health pages - do your homework -

Best of luck and feel well.

[anon07072023]

Hi,
Your neuro should do a neurological exam on you, which should include testing cranial nerves, motor, coordination, reflexes, sensory, and things like that.  

If your MRI wasn't done using MS protocol, she might decide to do another set of MRIs.  And if she doens't see what she's looking for on the brain & c-spine MRIs, she may order a t-spine MRI.  A lot of neuros like to do LPs. So, you probably should plan on that, too, a little down the road.  
I can tell you based on my experience, your symptoms sound A LOT like MS.  I hope tha you have found a good doctor.  If you can, you should see a doctor that specializes in MS.

Good luck!
Kelly