MS or NeuroSarcoidosis

Hi, new to forum (Candy)  

I was initially diagnosed with a spinal tumor so there were no issues about MS or sarcoidosis.

My first symptom was a loss of sensation in my right leg. Went to my PCP (I have an excellent one), had MRI. Radiologist said tumor. I was sent to DUKE to see Neuro Surgeon. He walked in and said it wasn't a tumor, but he would biopsy and we would find out then what it might be. Now my appointment was in September and he wasn't going to do the biopsy until November. He had me wean off my steroids to get ready for the biopsy. After the shock of being told it wasn't a tumor, I thought about what was said, or better yet what wasn't said and decided to get a second opinion (no blood or LPs done at Duke) only given copies of my MRI's.  Went to MUSC, met the Neuro Surgeon....same thing. He thought not a tumor but something else. Doc at MUSC was the one that mentioned sarcoidosis. It was a real roller coaster ride after that. Every blood test out there (10 tubes to start with), several LP's, MRIs, etc (in the beginning I tried to keep up but after a couple of years, gave up because nothing was ever a definite). I also have a really bad problem with memory, short or long. They say it will come back (when?)
While they were still determining what might be going on, the steroids  left my body and I had the biggest crash ever. My husband and I were in WI visiting family when all of a sudden I could hardly walk, extreme pain, became incontinent. We called MUSC for help (had me increase my vicoden) and get back as soon as we could. When we arrived at MUSC I was not allowed to go back on steroids until they had done another LP. Seem it was clear, then I was then allowed to go back on steroids (my husband had them in his pocket. Told doc didn't need a script - ha ha). The steroids had shrunk the mass (it was granulomas mimicking a tumor) so there was nothing to biopsy (I still wonder what the neurosurgeon at DUKE was going to biopsy).
It has been hit and miss since with trying different medications. I tried Remicade - didn't work. Caused new lesion on brain, back on big dose steroids. Things seem to have been going better so they tried to taper off steroids again.  Ended up in hospital (it was awful) with new lesions on cervical spine.  The steroids must have been working to keep them in check. Again test after test after test, blood after blood, LPs after LPs. The last was a PET scan. It showed absolutely no MS or Sarcoidosis (thank God, no cancer either). It got to the point where there was a good possibility that I would have a spinal stroke if not put back on steroids.  Back on steroids and sent home scheduled for infusions.  Things were holding steady, but due to all the medications I had to check my sugars and blood pressure daily and keep a journal did really well with that at that time).   The meds I was taking caused me to have to take even more because of the damage they were causing. I now have to also take Fosamax for my bones (directed by the insurance company who apparently has assigned a case manager to my claims) Lipitor for my cholesterol, Aspirin because I had to stop my hormone medicine, etc.  It was then decided to  put me on Imuran in the hopes it would take over what the steroids were suppose to do.  As I started to taper down on the steroids and increase the Imuran,  my liver function became abnormal. So now we are off the Imuran, have increased the steroids once again and waiting for new labs. Next choice will be CelCept. I really like my doctors at MUSC, but I just feel maybe some new eyes can pick up something that is being missed or not. One big problem is the damaged that was caused initially. It was the mass pressing on my spine that caused the loss of sensation in my lower extremities. I feel no hot or cold, no pain, prone to falls, left foot drags some, etc. I may or may not ever regain this back. I am blessed that I am able to function independently , but if I get a cut or have any kind of injury, I won't know it until I see the blood. I have to be extremely careful about infections since my immune system is compromised.  I am hoping that if I go to MAYO, they may be able to  pick up something that is being missed or have suggestions on what to do to get that definite diagnosis.  Thank you all for you responses.