Since most of my symptoms are bi-lateral the third neurologist diagnosed Transverse myelits in 2008 when I had a huge flare. Before this I had attacks of ON and then numb feet which resolved on their own. I chocked them up to stress.
My spine MRI showed a spine lesion extending from C4-C6 but I had some brain lesions too. This dumb neuro shook her head and offered me an antidepressant, which I politely declined, albeit through gritted teeth. Sheesh. I had and still have numb hands, numb feet and legs up to my navel, no balance, etc.
Finally the fourth neuro did a lumbar tap and I had all the bands for MS so she slammed me with steroids and then tried copaxone. I got somewhat better after the steroids but was allergic to the copaxone and now take IVIG treatments every 3-4 weeks. ( I had breast cancer surgery so she didn't want to compromise my immune system with the interferon drugs)
I have been relapse free until the day after Christmas when I got a nasty flu, let my temperature run high too long, and all the symptoms got lots worse.
After another MRI which showed no new lesions and some resolution of old ones, Neuro blamed it on a viral problem as she had the same issues with several other patients.
Slammed me with iv steroids for 4 days then a step down pack for 7 more.
Now in May, 5 months later, I am still in horrible pain and recovering slowly if at all. I take gabapentin for nerve pain, fentanyl patch for overall pain, valium for spasms and effexor for the depression and as an adjunct for pain. This was my first relapse since I started IVIG treatment in Mid 2009 so I feel quite lucky and will stick with IVIG for as long as it works.
I still feel like a zombie lurching around, bumping into walls. I can still walk but often have to use a rollator so I don't fall over.
Its no fun for sure. But try to make the best of it by exercising when I can, riding my recumbent trike and doing lots of stretching.
All I can say is your husband is not alone. Hang in there!
Jessica
Reading your post was very surreal to me. As you all know, I have RRMS. Last year my husband experienced exactly the same symptoms as your husband. He is also diagnosed with TM. He spent 3 days in the hospital being pumped up with steroids. The numbness and pain have remained. His MRI and LP were all clear. My neuro told him that there is nothing they can do. Does anyone know if there is any treatment for TM? I can' believe we might both end up with MS :(
I hope you get some answers and some help.
Deb
everyone has given you tons of good advice. Feel free to explore all of the health columns on the right side of the page. There is a wealth of information there. Educate yourself as much as you can so that you can be your husband's advocate......
Keep us posted, welcome to the family and we will try and help as much as we can....we are a collective bunch of ideas and experiences and as someone said, MS is very different for each of us, one of the reason's its a difficult disease.
You did ask about mimic diseases, some of which come to mind are RA, Lyme, Lupus, etc. google "diseases that mimic MS" and should bring up tons of informational sources for you.
I have many bilateral symptoms, though most of them are on my right side. I was diagnosed with a negative LP, few lesions on my brain, none on my spine, and a very abnormal neuro exam.
Often, one who is diagnosed with TM will later be diagnosed with MS. The percentage of those who are later diagnosed with MS varies between 15 - 60 %, depending on who you read/talk to. That's a wide margin.
Hang in there - I hope you get answers, soon. Also, don't be afraid to consult another neurologist.
I just want to comment (as you have received a lot of solid advice). My initial symptoms also started on both sides - I had muscle twitching and jerks. I was told that was atypical for MS so a couple doctors discounted it.
Eventually, there were other symptoms that became unilateral but my twitching and jerking still remain to be all over my body. Both sides.
My LP was negative. We are all different.
I am impressed with your knowledge and desire for understanding. Hang in there. Trust your instincts and don't give up. If he feels sick, seek answers.
I wish there were easy answers. There over 800 Neurological disorders and over 30 other diseases which mimic MS. TM is one of those diseases. Since Doctors can't actually look inside the brain and spine it is a lot guess work. MRIs only show a small part of the picture. Doctors trouble shoot which means they rule out what it is not until they have few or no more options and that is a diagnosis. Some people get a diagnosis quickly and for some people it can take awhile.
During the wait there can be a lot of anxiety. Neurologists are not normally fast if they are unsure they watch over six month intervals. I did this for two years. I had 5 MRIs with lesions, Positive VEP, Positive BAER, positive EMG, negative blood tests for tons of diseases, and finally 12 o-bands. I was first told I had two fatal conditions, then ALS, or Lupus. Finally it was MS. It was hard to keep my sanity through the process. Now three years later I can laugh about it.
I got really angry until I found out the doctors were following normal logic for them. I am so sorry you are having to go through this.
Alex
Hi there
Sorry can't put my finger on the 20 or so range of mimics but did want to comment on possibility of MS symptoms occurring both sides of the body ( bilaterally). You can put in google search mimics of ms to see info.
My condition started exactly the same way and has remained one year later. I have equal numbness and tingling from toes to start of chest due to lesion at T5.
I didn't realize that MS normally only presents on one side ( unilaterally) until months later being on this forum. I guess that is why my neuro initially dx me with straight forward transverse myelitis like your husband.
I was lucky that my LP was positive for O bands and again lucky that I requested another MRI within 3 months which confirmed a new lesion and my dx of MS.
So unfortunately your hubby is in limbo until it hopefully clears up in 6 weeks or something else is revealed in time.
Hugs and prayers to you and hubby during this traumatic time.
Blessings
Alex
Thanks Sarah for your comments and reassurance.
You mentioned that several conditions can produce a lesion and mimic MS symptoms. Can you tell me what are all those conditions.
My husband is diagnosed with Transverse Myelitis as of now. But my concern is that Transverse Myelitis generally doesn't relapse or reoccur.
But my husband had the same numbness in both his legs last summer and it went away on its own in three weeks. We did not get any diagnosis from the doctors then.
So we are not sure if the same lesion was present last summer or what caused it then. So I am concerned if he has transverse myelitis.
I think our Neurologist is good since he atleast immediately ordered an MRI and we found the lesion. The first one went to suspected vitamin B12 deficiency and diagnosed his condition as cubital tunnel syndrome.
Thanks
it should have no bearing on the O-bands. I am puzzled why they are considering MS if both sides are involved from the beginning. I am also puzzled over the abdominal stiffness (from a nursing assessment, MS would not have been high on the list) Is this neuro an MS specialist or a run of the mill neuro?
other things than MS cause lesions and many other diseases that mimic MS need to be ruled out before it can enter the picture clearly. I think its too early to put it on the front burner.
Just my opinion but no, steroids are not going to take away your O bands.
anyone also with medical, feel free to chime in!
Alex