hanging in limbo. anyone else?
Posted , 6 users are following.
So it all started last year at the end on june with a bad case of vertigo (bppv). went for therapy and therapist noticed i had nystgamus in one of my eyes which prompt and MRI which showed 3 mm along the right lateral margin of the mid body corpus callosum (3, 16) and 9 mm left occipital periventricular white matter (4, 22). that lasted for about two weeks. went back to work (ER tech) the my right leg had a dull achy numbing feeling then devloped lower back pain which then prompt an xray/mri, show a bulge in l5s1 area but shold be effecting the left leg not the right. Went to see a ms specialist. during the process i would have other symptoms as fatigue, struggling to learn new things and the leg pain. had a lp done, showed 1 "o"band. Had entire mri of spine, no lesions, yupiee!. Started to develop mild dizziness. Ms specialist said that he cant rule it out entirely nor can he diagnose me with ms. need to have yearly mri and check ups. was then refered to a neurologist. I was out of work about a 4 months during this whole process. Fatigue has gotten worse. was put on gabapetin and tramadol. i was at work, developed vertigo, hospitalized, released and went back to work a few days later. Cognitive declined, fatigued is debilating. On a rollercoster, weeks/ months fines, then bam out for a week etc. Can never shake the fatigue. some days the dizziness is tolerable others not so much. My neuro also stated that he can and can not rule out ms. he said that i had myofasical pain syndrome. I also developed same dull achy pain in the right arm. saw pain dr who said no i dont have myofasical but maybe have fibromyalgia but i dont fit the criteria cause the pain isnt wide spread nor chronic. GP and neuro thought i might be having "silent" migraines with the vision issues and dizziness. Just put on amitripilyne a few days ago.
Bottom line, no one knows the only thing that they all can agree on is that i have demylenating disease of the cns, unspecified.
anyone had anything similar to this?
I feel like i am crazy, just one year ago i worked full time, ran as a AEMT on fire dept, on committess, took care of family etc to only working full time, which i can barely handle at times.
i over due it and i am out for days or my pain is worse
any advise? suggestions etc?
0 likes, 3 replies
jaredboy beckyboo36
Posted
I had to comment on your post because I feel like we have a lot of similarities, although a different story.
Long story short, im in a similar boat because a year ago I was completely fine working full time, doing extra jobs, volunteering, etc and now I can just barely get up and get myself to and from work and maybe help my wife with cleaning the house a little. It started last july with a numb tongue/face (thought I burned it eating hot food at a bbq or something) and then went to the doctor which lead to a neuro, which lead to an MRI and a diag of MS. Initially of the brain.
For a while I felt fine but then in October started dizziness, lightheadness, feeling weak. I got every answer under the sun including Lyme disease, but no answers. Unfort I do have lesions on the spine too, so arms and legs in pain and going numb, but by far the fatigue and insomnia are the biggest killers. I am still working full time, but its harder and harder each day.
In terms of medicine, since it seems you arent on a MS med yet, all I can say is they basically just slow progression, but dont necessarily "cure" or stop symtoms, so by you taking the few drugs for fatigue and not working, well I am taking Tecfidera (MS drug) and a host of different things we've tried for fatigue and insomnia and I basically havent improved and feel sometimes my life has been taken away from me, Yet the only advice I can give is what I keep telling myself "Endure and it will get better in time" As mysteriously and randomly it came on, I feel it will go away- just like my numb tongue did eventually after a while. The fatigue is lasting much longer, but I feel eventually it will get better or at least under control, but who knows maybe not. I am going to go for Ocrevus infusion drug, I will definitely post ina few months (how long it takes to get on it!) if that helps me make any progress, perhaps it can help others too! anyway hang in there!
bic24773 beckyboo36
Posted
I really feel for you, I was in limbo for years, got an ms diagnosis which felt like a relief, have lived and coped with intermittent visits to a nasty neurologist so I just got on with it. Started to go downhill and had to beg for a referral, notes were lost and then neurologist gave me the impression he didn't think I have Ms. Sine notes turned up after they said they were destroyed showed lesions. I'm now waiting for results of a scan and august for neurologist. I can't walk, I can't get pip and I can't at the moment even get a blue badge. I feel in limbo again. Push for a diagnosis, insist it doesn't change anything but it will help you. ?
blender00 beckyboo36
Posted
Sorry you are feeling so awful. So many MS patients have a similar story. It can take a long time for a diagnosis. Everything else must be ruled out. It took 4 years for me. MS is a tricky disease. Mimics so many others. I saw three different Neuro's before I found one truly interested in my problems and finding answers and treatment to help me keep going. I too want from very active to having only enough energy to work and come home and calapse. My life was turned upside down. Thankful to family who kept me pushing for answers. So I encourage you keep looking for the doctors who want to help you. Treatment and changing the way I live has gotten me back to the life I love. I wish you well. Don't give up.