Its been 2 months since this whole thing started and I dont know what to think anymore. This stiffness in my legs continues along with the cramping and the twitching. Some days worse than others. I was diagnosed with a disc herniation on the right side of my l4 l5 region pinching my l5 root and causing stenosis and an inflamation of my s1 root. But i am starting to think that this is not the cause of all my symptoms especially since most of the symptoms are on my left side.
I have had every sensation in my legs you can think of but its the stiffness that remains constant. When the stiffness loosens up then I get the cramps mostly in my calves on the left side where the muscle just stiffens up like crazy and starts to hurt, when i sit/lie down the cramp will usually subside but thats when the twitching sets in. I get it from the back of my hamstring all the way into my feet but mostly in my calves and mostly on the left side. I get all sorts of twitches/fasics/spasms (whatever the hell they are) from the popping ones, to the bubbling ones, to the ones that seem like theres something crawling around in my leg. Sometimes they are visible and sometimes they arnt. Then there are times when i sit a certain way i get some tinglyness down the back of the left calf, or maybe a little numbness. Ive gotten the restless feelings in my legs, some burning and cooling sensations, and even some itchyness. But mostly stiffness/cramping/twitching.
I went to the Chiro to start decompression on my back for the disc and he didnt suspect anything bad and said hes heard some similar cases but also said that my herniation didnt look that severe. How much stock can you put into a chiro tho? When im on the decompression my legs twitch like crazy and when i get off they are as stiff as a rock. After the stiffenibng eases up the cramping and twitching set in again. I started using magnessium pills and they seem to help a little bit but not too much.
Then I went to the Neuro for the first time yesterday. He did a thourough exam on my tested my reflexes and strength and said everything look great for a 24 year old, but he didnt have an answer for my symptoms because he didnt think the disc could cause it all either, but he didnt not suspect als. He actually said in his 30 years at work hes never seen a case of als that started out with my symptoms.. He did throw out the words b-12 definciy, anxiety, and bfs, but none of those explanations make sense to me. So he scheduled an EMG for 2 weeks from now and said if there was something serious going on the emg would show some sign of it and then we could go from there.
The bottom line is that i have convinced myself 100% that i have this terrible disease. Its consumed everything i do. I cant sleep, work, have fun or do anything without thinking that im dying in about 2 years. Im constantly checking my muscles, strength, twitches, and looking for new symptoms. One day i think im having problems with my hands, the next its my face, then my chewing/swallowing, walking feeling like my calves are gonna give out, standing still i feel like im gonna fall backwards, you name it. Im driving my loved ones crazy and I just dont know what to do anymore since im soooo convinced that im dying. If there is anybody out there that could shed some tips on my situation I would appreciate it greatly. I treasure the input from Wright and Al and would love to hear from them on this situation. This disease is ruining my life and i dont even know if i have it or not! Sorry if im wasting some of urs time but thank you for listening.
Andy
Jennifer ... boy, do I sympathize. I've seen 7 neuros, and pinning them down is impossible. The first one did actually write down a list of 5 diseases he was considering (stroke, LEMS (a precursor to lung cancer!), Myasthenia Gravis, Progressive Bulbar Palsy, and ALS.)What I want to know is...does anyone know where I can find a list of ALL the mimic illnesses that can be tested for, so that I can check that EVERYTHING else has been ruled out...however vague the possibility is of having something else. I HAVE accepted that they are right, but I cant rest until I KNOW every other possibility, however silly it might sound, has been ruled out. Jennifer51
Jennifer ... boy, do I sympathize. I've seen 7 neuros, and pinning them down is impossible. The first one did actually write down a list of 5 diseases he was considering (stroke, LEMS (a precursor to lung cancer!), Myasthenia Gravis, Progressive Bulbar Palsy, and ALS.)
I asked the second guy what all he was testing me for, and he said there were just too many possibilities for him to list them all. I've had neuros tell me they didn't think it was ALS, but that "something else is going on" ... but they won't say what.
I feel just like you do ... just let me know that you have ruled out everything else ... then I can accept the diagnosed. Psychologically, it's terrible to have these doubts lingering. I don't know how you can convince a neuro to explain the range of possibilities, but it would be a gift from above if one of them would do so!
Good luck,
BethU
My first neuro did all the tests, blood, mri, emg etc,,, and he said the emg was cast iron evidence that I have bulbar...and the other 2 neuros have just said they agree with him, just from looking at me and checking out my history, but not checking the test results.......but I am the sort NOT to accept initial findings (for any topic) and always try to do a lot or research. I agree my symptoms are classic for bulbar..so they are most likely right ....
thank you, much appreciate that.... I have an appointment on Friday this week at an MND (ALS) clinic funded by the MND association UK...and HOPE that he has the test results from my first neuro...who I dont have much confidence in. I am also hoping to get some information from him...from the horses mouth...about the italian lithium trials. The neuro is in fact italian and was going over to Rome last month to talk to doctors and patients involved in the trial. I am HOPING also to get some information about up coming trials in the UK...which the mnd assoc are hoping to fund following their own research. I have asked to be considered for the trial. BUT meanwhile I want SOMEONE to tell me that EVERYTHING else has been ruled outHello Jennifer51,
After finding out that my neuro listed MND in a differential diagnosis , I googled "differential diagnosis ALS" and found a list of all sorts of things, with ALS in the middle...it seemed to me to be exactly what you are asking about AND what I have been trying to relocate in the past few days. I want to find it, and take it with me to my next appt, and then have my doctor cross off most of it (and of course, circle something other than ALS)....When I google stuff, I am tenacious and will go through 15, 20, 30 pages of hits...so it will be a bit before I find it again, but when I do I will send it your way.
Lydia