Out of my comfort zone with this stuff Poll, sorry, but it does all sound normal including the WBC (did you mean WBC?), RBC and oligoclonal protein (also known as bands) - so negative for MS. So sorry it didn’t provide any obvious answers Karen x
Can we make you a ‘honary’ member of the MSS forum Poll? - lf they discover you have a very rare condition - which it does seem to be going that way - you might end up on your own on a forum and we can’t have that.
Hi Poll, There is confusion about by diagnosis too. Neuro 1 says not MS but possible RM - radiation myelopathy (from previous treatment for cancer. 2nd Neuro says definately not RM but possible MS. I have a clear LP and one lesion in cervical spine area. Symtoms first appeared 22 years ago, 6 months after radiation treatment in neck area. Main symtoms now are spasticity is right leg and brisk reflexes in both legs. Irriable bowel too.
I have thought of HSP too but not mentioned it to doctors. My mother has all her life had problems with bladder and bowels. She has weak ankles havingg gone over on them frequently and is now going deaf!. These all seem to be symptoms of HSP.
I am interested to know if your MRIs have ever showed anything and how did your symptoms start etc.
Hi Pat, the Teresas, Wendy, LInda (think I`ve mentioned you all, sorry if I missed anyone), thankyou so much for your kind replies and support, as always.
If I have MS or HSP or galloping dogrot, you`ll be hearing more from me…this lady wont go quietly…I guess you already know that!
Thanks for all that. You have definately been through the mill honey. I was 45 too when right leg started to go heavy after walking the dog. Now at 48 it is heavy all the time, spastic calf, quads and dropped foot! Am about to start a chemotherapy drug for bowel cancer which is supposed to be good for radiation myelopathy. Treatment is given for RM in the states but not approved here which is why I have to pay aprox £5000 for it.
Thanks and keep on posting as I enjoy reading them.
I really feel for you, I bet you feel like you are going around in circles. I for one felt sorry for myself when I was diagnosed with ms but at least I found out quickly, it must be a nightmare being thrown from pillar to post.
Thank goodness you are such a positive person, many wouldn’t be able to deal with this with the attitude you seem to have.
Hi Poll, that’s really good news about the bowel screening, and it seems you got that result fairly quickly too. As for the lp, well, you’ll just have to wait and se what new neuro says. Is it possible you still have ms even with a negative lp (2negative lp’s now isn’t it)? As for testing for hp, only you can decide, I’m not going to go into the ins and outs of it because I’m sure youve been through it all I your head so many times. Hang on in there, you are better of than before because you have now done the lp and had the result. Hope the neuro appointment goes well. Cheryl:-)
Karen x