I want my life back

[Sassysarah1974]

On may 16th my life changed dramatically. I am a home hospice CNA and have not worked since. I went unresponsive at my friends house the night of the 16th. My legs became very heavy and I had a hard very hard time standing up, in which my friend had to help me stand. Slowly but surly everything on my body felt like a 1,000 lbs. she assisted me into the house and eventually I couldn't even talk. Her husband assisted me to his car and drove me to the hospital. I became unresponsive then, but I could hear everything going on around me. Very scary as I haven't really had any medical problems previous to this. It took almost a month for me to be able to ambulate normally.  They did a cat scan and blood work and all came back normal. My primary was of cours on vacation that week so I saw someone else. He set up an MRI that week thinking my symptoms were transverse myelitis. So only an MRI of my spine was done and came back normal. He then suggested I see a neurologist. Saw him in the beginning of June. He ordered a MRI of my brain an other testing. About 2 weeks later I had another episode, not as bad as the first but another er visit. so my neurologist wanted me admitted and I had numerous tests done in those 3 days. Eeg, ekg, MRI, blood work daily, testing my eyes for seizure activity, nerve test, etc. all came back normal. In the hospital they could see I could not ambulate properly, had trouble moving my left leg. Couldn't lift my legs up if laying down, etc. good thing was no pain yet. But daily I would have tingling up and down my left leg. My last test done was an emg last week. And guess what?!?! NORMAL!!!  I had a small Mini episode yesterday, and again my gate is off. But now I have pain to go along with stiff, but weak muscles. I am constantly exhausted. But yet my body won't let me do anything except basic ADL's but at times those can be a chore. I am now going in to get a second opinion from another neurologist. I'm totally frustrated cause obviously something is not right!!! I begged my neurologist to do a spinal tap, if anything to rule out MS, but he refused and has sent me to Froedtert for a second opinion. Froedtert from what I have been told is an excellent teaching hospital. I have an appt this Thursday.  My life is on hold completely, I have moved back in with my mom at 40 yrs old. I can't even take a walk with my son because my symptoms will increase with activity. Anyone else experience similar symptoms? I'm starting to think my episodes were periods of paralysis.

[HVAC]

Something sure is going on. It is a puzzle all the tests are negative. It sounds like the doctors are trying to figure it out. It sometimes take a long time for a diagnosis. My first MRI showed MS But it took two years for a neurologist to diagnose it. I have no clue what is going on. I hope you get an answer soon. If it were MS they would not be able to fix what is wrong. They could only give you medication for pain and hopefully put you on a drug to slow the progression.I know you want your life back. It would be terrible to have your symptoms.

Alex

[sandraeb]

MS is an aweful disease.  I'm in a wheel chair after22yrs walking with a cane.
"paralized for one week.  DR at 1st thought it was a stroke.\

[HVAC]

Your case is very severe. I would think if was MS and that severe it would show up on MRI. I think you do need to push for what is going wrong. At least they are sending you elsewhere. I have no clue whether it is MS or not. Somethings medically things are complicated. One thing I have done wrong is not pushed harder for an answer.

Alex

[essdipity]

Hi, Sarah. I'm sorry you're having such problems. They sound very bad.

I have to say, though, that if you've had MRIs of brain and spine that were normal, it's highly unlikely you have MS. This is especially true if the images were done using the MS protocol and on high-strength machines, meaning at least 1.5T but ideally 3.0. (If these terms are not familiar there is lots of explanatory info on the web.) Nevertheless, if your whole body issues are due to MS, even a weaker machine should have picked up some evidence of this somewhere.

I'm guessing your neuro refused an LP because your office exam was also normal. Since you work in the medical field, you know that lumbar punctures are invasive and not without risks or possible after-effects. However, even when MS is strongly suspected, many neuros are no longer ordering this test. It cannot rule MS either in or out, but if positive, can lend weight to an iffy diagnosis.

I think you're wise to see another neuro. If he or she tells you you don't have MS or some other disease, ask to keep pushing to find out what you DO have. Please let us know how things go.

ess