Pre diagnosis advice

Hi everyone, I’ve been reading a lot of the threads on here for a while now, looking for advice and help. I’ve been on a rocky road to diagnosis for about 20 months now. 2 MRIs, copious blood tests, examinations, consultants, passed from pillar to post. Lots of head scratching. However finally I may have some light at the end of the tunnel. My MRI scans (1 full spine, 1 lumbar) show multiple level degenerative disk disease. Bulging discs at cervical, thoracic and lumbar. Two disc herniations at lumbar, 1 which in intra vertebral (schmorls node). I have masses of back spasm which won’t relent. I have numbness/ pricking sensations to hands, fingers, toes, outer calf. Also leg stiffness in my right leg and a sensation as though my right calf muscles is tensing itself and like its going to pop involuntarily. Last week I found out I tested positive for ANA (1:80) in my bloods Yesterday my pain doc did an examination and found that my reflexes were no existant on my right but brisk on my left, he also found I had clonus in my right foot and my hand strength on my right was weaker than that of my left. He stated that he was concerned and was going to contact the neuro I’m seeing on the 29th. Also requesting further MRI of my neck. Just wondering if this sounds similar to anyone else out there, is there any advice anyone can provide. I’m still I diagnosed and only 33.

Sorry it should have said undiagnosed


My name is Susie. I am a 54 year old woman who already has been through tons of tests in my life. I have ben diagnosed with Non-Presenting RA, and a few other Auto-immune disorders and I have been using Methotrexate for about 6 years and it has been great! I have suffered from Migrains for years and years but about 10 months ago they became relentless and my best friend/Dr. wanted a MRI. I was panicking over that because I’m claustrophobic but figured one and done and I’m all good because in the meantime she put me on Propranolol and my migrains actually became rare. In the clear right? No, there were some lesions on my brain so she sent me to a Neuralogist. After a thorough check up we talked about my bad sense of balance, the numbness and tingling that came and went in my one arm. There was some cognitve issues also and fear of Altziemers as that runs in the family. The Dr. said, "well, there are some issues here and we could do several other pricey tests. I said can we do a wait and see kinda thing, because I don’t think I have MS. He said yeah…me either but I can’t be sure. So, we decided on a follow up MRI in 6 months.

Well, that appoinment was two weeks ago and I asked my hubby to come with because he ask’s better questions then me. Before the Dr. came in I said to my husband that “If he comes in and say’s I have MS I am going to divorce you because I’m not going to make you go through that. So…you could have knocked me over with a feather when he said, there are more lesions and we need more test’s, but I’m pretty sure you have MS. We schedualed a Spinal Tap, Neck MRI and a Vissual EEG. We did those all on one day last week and the next day, I took off work and had a pitty party for one. When they first said MS I got on line and then went to the library and have been reading every night about it. First of all you should know that my wonderful husband’s comment to me was” you are not leaving me and I am not leaving you!" We see the Dr. again on Monday and after reading everything that I have, I believe I do have MS…and I’m scared of what’s to come. I have been having knee and leg pains for months and had gone to a knee dr who said, just a little Bakers cyst. Shouldn’t have pain from that. I’m schedualed for a second opinion next Thursday. The pain during the day is mostly mechanical in my knee joint with some burning. At rest, it becomes from my knee down, and it’s horrendous. Some day’s it’s from my hip down. I’m taking tramadol for pain and it’s not doing much. I get very little sleep. I never really told the MS guy, because I thought it was a whole other issue. I’m afraid to tell anyone. For now it’s just my husband and I and I’ve been dodging questions from family about how my appoinment went. I told them I haven’t gone back yet. I’m scared! I know that this is really long, but I feel a little better for having “talked to someone about it”. Thank you for this website! I’ll keep you posted