Dont know what to do anymore

[Al]

Psychology kid. We take your mind off your troubles. Might even get a laugh out of you sometimes.

AL.

 

[Maggie Miller]

HOpe it is not!

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

Andy........whether it is ALS or not (I have all the parts of my body crossed that I can still cross for you) try Tonic water with Quinine. I have bulbar onset ALS and injest all nourishment through a port, but mix half tonic, half water and benefiber into a 64 oz pitcher and make sure I take it all in by the end of the day. It works pretty well. LOL

 

[clint31]

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.

this is why I think its lyme disease.

everyday it seemed to change where it bothered me.

 

[wright]

Clint, I'm glad you finally believe the diagnosis you got from you neuro. Now get better and let us know how you're doing.

 

[JBSRI]

Andy: I feel your pain---literally

Hey Andy:

Just wanted to say that I was FLOORED when I read your post. I too had surgery early 2007 on l4 l5 and had my disk removed and spine fused. Before that time, the pain was down my legs into my feet. I developed drop foot and the surgery immediately brought it back.

Fast forward to today. I too--like you--am experiencing horrible cramps--primarily on the right side where the drop foot was and many fasciculations in the calf and arch of foot. Very very painful. However, I notice that it isn't as bad when I change positions, and that the cramps are in spots where the sciatic nerve runs as well. I don't have drop foot and my strength is good, but like you, I fear ALS.

I am somewhat ashamed, however, to be posting on a forum where people actually live with the disease. For that, I apologize. But I have been stressing out on this issue as well.

And since I'm dishing, I will tell you that in 2004, I had an EMG test and other neuro exams b/c I had fascics in feet legs and back and I was sure I had ALS then. Tests came back clean and I was told to live my life.

Andy: My best guess is that since the disk was removed initially, the pain we feel is different than it first was with the sciatic. However, I do think it is compression that is hitting the nerve, but perhaps in a different way or in different areas. I hope this helps.

And like you, I have been projecting numbness in hands, back shoulders, muscle cramps etc. But the real pain is in my legs. Truth be told.

Anyway, thanks for reading the post. I hope it helps. And to the people on this board, I am not a religous person, but I sincerely mean it when I say My Prayers Are With All of You.

JB

 

[Jennifer51]

is there a FULL list of other diseases that should be tested for

Sorry if this is in the wrong place, could not work out how to get it anywhere else.

I was diagnosed in March/ Apr 08 with bulbar and 3 neuros have agreed, though only one has seen the test results. I am going back to one neuro in a couple of weeks...who did not do the initial tests...this is in a new ALS clinic. 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. If there is not a full list, then peoples ideas are welcome. I ve learnt that WE on this forum sometimes have better input than than the doctors !
I have had blood tests...MRI, EMG, nerve conductive and lumbar puncture. But at no point has anyone given me a list of names of what exactly has been ruled out....
Jennifer51

 

[BethU]

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

 

[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 ....but I did read somewhere on the internet, may have been this forum, many months ago, about a guy who was ALS and getting so bad that he was planning his funeral, then for some reason he saw a new neuro, who low and behold found that he did not have ALS at all, got the correct medication and recovered. I am afraid I found this in the early days of my diagnosed when I could barely see through the tears, so cant remember all the facts. But you would think they could produce a list of everything that SHOULD be checked, however vague the possibility is that we might have it.

 

[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 ....

Jennifer, I am so like you. I really felt the guy who diagnosed me with ALS had his mind made up when he walked in to do the EMG. That doesn't mean he was wrong ... I don't think he was ... just that he obviously was going to diagnosed ALS no matter what the EMG said. What gave him away was that at the end of the EMG, he said, "As soon as I heard you speak, I knew you had ALS because that's what ALS patients sound like."

Problem: I'd been hearing that same thing about a bunch of different conditions. A speech pathologist a few months earlier told me "As soon as I heard you speak, I knew you'd had heart surgery and had recurrant larengeal nerve damage, because that's what people with that damage sound like." Six months before that, a speech therapist said, "As soon as I heard you speak, I knew you had Parkinson's, because ... (all together now) "that's what Parkinson's patients sound like."

Of course, my speech problem is called disarthria, and it can occur in a number of different diseases. Everybody with disarthria sounds the same, no matter what the underlying disease. Duh!

Until a neuro can clearly explain what it is about your tests and symptoms that CONVINCES him that it is ALS and CANNOT possibly be anything else, I think patients will continue searching for that level of certainty.

(And I would be worried about that "cast iron evidence" statement on the basis of an EMG. The neuro who diagnosed me told me after the EMG that there were no "ifs, ands, or buts" about my having ALS, but that is NOT what he put in his written report. He really hedged his bets when it was in writing.

And when I got to UCLA clinic, the neuro there never reviewed any of my tests or symptoms, at least not with me, and later, in reading HER written report, I found she'd gotten a lot of basic information wrong. For starters, I am not 5'11 inches tall! I hope it was a typo, and does not mean that she was reading the wrong chart.)

We have got to teach these neuros how to communicate with their patients!

BethU

 

[Jennifer51]

DITTO Bethu...my first neuro, said ...(you got it..) ....I knew what you had as soon as you walked in and spoke to me...as that is what bulbar palsy ALS sounds like...so he went on to ...prove ...himself right...he even complimented himsself when I told him the person he sent me to for a referall..agreed with the DX this was one of his colleagues...who only physically examined me...no hint of any tests results present. I have seen a third neuro of my choice who did agree with the DX but with the proviso that he needed to check out the tests and results...at last someone who is prepared to meet me half way...plus the third guy actually specializes in MND ALS in a special clinic, whilst the other 2 were just neuros in general. I am hoping the new neuro of choice might be able to get me into one of potentially 2 new drugs trials that are hoping to be set up in the UK...dont know any more about them, still in final stages of planning and funding...but at least my name has been put forward for everyone to consider...roll on...There have been so many breakthroughs in England for many drugs for other diseases that it is about time we got out breakthrough....yeah ..

 

[lydia]

A list of diseases to rule out

Hello 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

 

[Jennifer51]

Hello 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

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 out

 

[lydia]

ALS differential list

Here is something I found for ALS differential that seems helpful. I am still trying to make sense of it, perhaps you will have better luck than me. Good luck at appt.

http://neuromuscular.wustl.edu/motor.html#motorddiagnosed

Lydia