If not MS, then WHAT???

[Palollypop]

This post is a duplicate which I am repeating on the advice of Rendean.  

I am a 35 (36 next Tuesday) year old woman.

Summer 2006, I started getting severe pain in my left temple.  It truely felt like a knife was slowing being inserted.  This was not a stabbing pain, but constant and severe.  It lasted for 2 months, sometimes it was not as bad as other times, but it was constant.  I was told by my primary md that he thought I had trigeminal neuralgia.  It was much worse in the heat and bright light.  Pain radiated down my face.  I couldn't stand any "extra" noise.  Like if one person would talk to me and the tv was on, I could only hear one thing.  I was put on Topomax and had miraculous results.  I did have some side effects from the Topomax, but they weren't bad.  And I lost 80 lbs!!!

About a year after that, summer of 2007, the Topomax stopped working.  I thought I was going to die.  MRI showed no signs of trigeminal neuralgia so I was told that "it must be atypical migraines"  hmmm.  I was placed on Propanolol.  I have only had about 2 "migraines" since being on the propanolol.  No side effects.

Then in  March of 2008, my mother in law moved in with us due to complications from a surgery.  I ended up being her health care giver.  It was EXTREMELY stressful and we ended up in marriage counseling over it.... BUT during that time, EXACTLY one year today, I had what felt like a spot of heat in my left thigh.  It felt like getting burned from the inside.  I was like... hhhmmm weird.  But when it didn't get better, I went to the doc because I thought maybe a blood clot. Also, when the headaches started, I have since had a continual buzzing in my left ear.  He said he thought it was ms, and sent me to a neuro.  He took FOUR MONTHS to get into, then ordered a new mri.  He said that there is no sign of ms, must just be hormones.  The mother in law is moved out, the stress is gone...still the problems are there.

I have had continuing worsening of symptoms over the past year.  There is not an hour that goes by without something.  NOW my symptoms are decreased feeling in face. Extreme periods of pain in neck, but only on one side at a time.  Shock like sensations up and down my spine, but mostly in the middle of my back, and now the shock like sensations burn as well.  Random pain and tingling in legs and arms.  A sensation that feels like an arm band around my upper arms. Muscle twitches, weird feelings of vibrations in my legs.  Sharp stabbing pains in the bottoms of my feet.  Muscles around the eye, left eye only twitching.  Lips tingling.  Throat having a sensation of closing.  Foggy brain, hard to communicate all the time.  I can talk, I just have a hard time formulating the words.  But NO HEADACHE.  Yeah for me, the migraines are through. LOL.  So the neuro orders a brain test with some scan.  Negative.  Mri.  Nothing.  Blood work.  SOMETHING.  Yeah for me!  NOT CRAZY!!  It is a "PROFOUND" b12 deficiency.  This can mimic ms apparently, so I start taking injections.  Once a DAY of a week, then once a week for 6, and now I am on once every 4.(It's been about 7 months of b12)  Blood work shows that levels are now normal, but all the above symptoms are WORSE.  Now I get pain in my left thigh that feels very deep, like in the bone.  I have pain in my back and sometimes pain in my arms.  The hot spots are throughout my whole body, so is the twitching.  Everything is getting worse.  Also, I have poor heat sensitivity.  I got hot the other day and my skin flushed.  I felt like I was on fire.  It hurt so bad through my whole body and I had to get cold.  I took a cold shower and then layed down and was back to "normal" about an hour after.  Called neuro, he said hormones...early menopause, but ordered a new blood work up and a spinal tap.  

The spinal tap showed "slighty elevated protien levels", but was probably caused by stress, so says neuro.  Now he has a SUPER FUNNY joke about "drilling holes in me and letting out the evil spirits".

Then my left eye started to HURT.  Nothing relieved it.  Called neuro, he referred me to an optomologist who said I had nerve inflamation in that eye only.  Good news though, I have 20/20 vision.  He said he thought it was allergies, which I dont have, and prescribed prednisone drops.  The drops kind of worked, but not really.  After I stopped them, the pain came back.  He looked again and said that he just didn't know, but here are some allergy drops.  I never used them, but suddenly, my eye stopped hurting.  It hasn't hurt since (about 2 weeks).

NOW neuro has referred me to University of Utah medical center to an ms specialist..  What????  I thought there was no sign of ms????  Appointment is in JUNE.  I am freaked out.  Does this sound like ms to you?  I am not wanting to "borrow trouble"  but seriously, if not ms, then WHAT????

Thanks for any advice or help you can give me.

[shoshin]

Just wanted to say that I'm totally with you on the not wanting to have MS and the wanting to believe the doctors.

The first neuro I saw told me to go home and pray I didn't have MS. When the MRIs were clear, he told me 100% I didn't have MS. At the time, I thought what an idiot doctor, of course I don't have MS. Six years later, I was dx'd with MS. Idiot me, I guess.

*All* of the health pages would make anyone have an info overdose. I hope you're recovering okay from that and that you get some answers at your upcoming appointment.

sho

[Lulu54]

Hi Paula,
Happy Almost Birthday to you.  You can ramble here all you want - we are great at listening to all of us go on about or uncertainties, fears and questions.  We all do it from tiime to time.

If you made it through all of our health pages, you are definitely on information overload.  There is a ton of stuff in there.   But now you also know that MS is not a death sentence - that most MS patients lead fairly normal, productive lives .

You are fortunate to be moving on to a respected MS neuro, who will hopefully recognize your disease, put a name to it, and prescribe an appropriate treatment.  You may have MS but you could also be dealing with one of the many mimics... please stay open to that possibility.

Between now and June your assignment will be to relax, don't forget to breathe, and assemble a timeline of your symptoms, and medical tests.  All three of these tasks are equally important.  

We're here for you so please come back and ramble some more whenever you need to.

my best,
Lulu

[Palollypop]

Thanks for replying.

The opthamologist never said the words "optical neuritis".  He is about 100 years old, and is in the same building as the neuro.

The neuro never said what protiens were elevated.  He just said that the protiens were elavated, but that was probably from me having stress related to the spinal tap.

I stayed up and read every article in the health section last night.  I think I am on information overload.  I see so many mistakes that I have made in my own path.  I guess I just trusted the doctors because well...who wants ms?  

My husband works with a lady whose mother was diagnosed with ms.  She saw the same neuro as me, and after a year he referred her to University of Utah, same as me.  THAT doctor gave her the diagnosis.  She has had remarkable results with treatment.  

If only I had the information that I have now, that I had when the family doctor said "I think you have ms".  Especially the article that said STOP, ask for a specialist.  I feel so frustrated.  Sorry to ramble, but today was a bad day.  

Paula

[risnerrose]

My advice . . . get copies of all tests, MRIs, doctors' records, etc.  This journey tends to be paved with many doctors.  It saves so much time if you have your own records.  

I do have a few questions?

1. Which proteins were elevated in your LP and how much?  I have never heard of stress affecting the spinal fluid.  I'm anxious to hear what others have to say about this.  By the way, I would have to have a very good raport with my neuro to find the "evil spirits" joke funny.  Is this neuro taking you seriously?

2.  Did the opthamologist ever mention optic neuritis?

Many of your symptoms do resemble those of forum members, including my own.  Some of us have an MS diagnosis, many are still in limbo, and some have been diagnosed with disorders that mimic MS.  I recommend that you hang out with this group for information and support.  Keep us posted, read the health pages (link is on upper right), and be your own health advocate.

I hope you find answers,

Sherry