Dont know what to do anymore

[massurfer1]

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

 

[wright]

OK Andy, listen

The symptoms you are describing most certainly can be attributed to your disc herniation.

The stenosis (that means a narrowing) is compressing your spinal cord and causing the stiffness and weakness in your legs.

The impingement of your nerve root as well as the inflammation . . . and if you have the type of herniation you are describing . . . the inflammation is most likely affecting both the left and right roots . . . will cause all of your other symptoms.

The fact that changing positions along with different movements causes an almost immediate change in your symptoms, should tell you that it has something to do with your herniations. MND symptoms do not change from one second to the next.

On top of it all, ALS doesn't typically present in the way you are indicating. You have gone from perfectly healthy (according to you) to nearly being debiliated in a matter of 2 months. A disc herniation on the other hand, would present exactly like you have indicated.

Symptoms can also progress with a disc herniation. Some people live with these ailments for a very, very long time. Be patient with your recovery and stop stressing so much about ALS, because in my opinion, it just doesn't sound like ALS at all. You need to concentrate on getting better and not on having something you don't have.

Now go get some rest, because you obviously need it.

P.S. Has there been any talk of putting you on steroids or giving you a shot of steroids directly in the affected area?

 

[massurfer1]

response to wright

No they havent even mentioned a steroid injection, im going into week 3 out of 6 of the decompression therapy next week but there doesnt seem to be much difference other than since they started doing it other than more aches in my legs and some knee pain.

Theres 2 things that worry me the most, the first is i have not talked to anyone with similar symptoms to mine with disc herniations, most people get the shooting scatia that i dont get or exclusive numbness and tingling which i only get a little of. The other thing is the people who tell me that my disc does not look that severe on the mri's. That makes me start thinking something else.

If it is the disc and im doing the decompression how long b4 i start noticing good results? Another thing that my Chiro mentioned is that I have had off and on leg problems for almost a year now, is it possible that i have had the herniation rubbing up on the nerve for that long and maybe over time its damaged it pretty good? I just worry for the worst because im terrified that i am one of the few that dont get weakness as their first sign or that i have a weakness somewhere already and just dont know it yet.

 

[wright]

Decompression therapy isn't something that is going to "cure" you over night . . . and some people benefit from it and some people don't. There really isn't any way to put a time-frame on it either. Ask them what they have seen in the past to give you a better idea. Make sure you tell the docs that the decompression might be worsening your symptoms, too. You must keep the lines of communication open with your docs or there is no way for them to know what is happening with your symptoms.

You have spinal cord compression: that isn't going to present with any pain at all; that will present with stiffness and weakness.

Your disc herniation doesn't necessarily have to present with too much pain. It all depends on where the disc is hitting. I guarantee you that there are others that have your exact same symptoms with disc herniation.

If you have that many problems with your spine, it's my guess that you have problems distal to that . . . meaning . . . your lower back, your gluteal muscles, your hips, etc.; that's where the other symptoms can be coming from. Just because some of your docs don't think the disc herniation can explain all of your symptoms, doesn't mean that the nerves in your lower back, gluteal muscles, etc. aren't being impinged in some way. The nerve roots in the lumbar and sacral area are the start of the nerves that go down into your lower extremeties. Damage to them at any point can potentially cause problems.

Your observation that the disc problem started over a year ago is a good one. Actually, it probably started YEARS ago and finally it herniated. The inflammation might be more extensive than the MRI shows. Keep in mind also, that your symptoms change from one second to the next when you change positions. That is your "ace in the hole." MND just doesn't do that.

Now go relax and keep your docs informed and let them do their job . . . and do your job as well . . . which is to concentrate on getting better. You got your diagnosis from them, so feel good about that.

 

[awieleba]

andy~

If you have stenosis it can cause some of things you say. I am no expert, but grandma was just diagnosed with that due to bad foot and weakness. we thought foot drop, but it is from spinal stenosis. It made her foot not work, just kinda drag along and cant stand on it. She has been PT. They massage her back with warm and cool compresses. My FIL has this and was in a wheel chair, went PT and did his exerercises and is doing alot better. MY aunt had a back operation (pins put in) and she has real bad spasms from this. Again, I am not expert but in the 3 people I know that have back problems they had some similiar issues with walking and leg with foot problems.

take care,

april

 

[clint31]

Listen to me.

Go get tested for Lyme disease. Make sure its IGENEX lab.

Your last paragraph I wrote months ago.... I wrote the same words and felt the same way. I don't have ALS but I had all the symptoms... you are my age.

Get tested for lyme. You may have it.

 

[massurfer1]

lyme disease

Clint, when i went to the neuro last week he did not even suspect lyme disease (he didnt suspect als either but i would expect anyone to suspect it at my age off the bat either). I do not know much about lyme disease or if it can cause all my symptoms. I dont recall having any fever lately, only an ear infection (in which starting the antibiotics have seemed to make my cramping and twitching worse) I wake up sometimes shivering like crazy but i just attribute it to my anxiety about having the disease. I did have a nasty rash on the back of my neck but that was like 6 months ago would it have taken this long to develop? And yours sped up over a couple of days, my symptoms are over a couple months.

My legs just fell really cramped up alot, stiff and twitchy, i notice the twitches too when i relax like sitting down after standing for a while or while laying down, mostly in the morning. My twitches and cramps were going crazy this morning when i woke up, up and down both legs, but a majority of the symptoms are in my left calf, it just always feels stiff like therer is a tennis ball in it. I lot of times my legs feel hot, like burning sensations especially when i sit down and they clam up and get a lil sweaty, i dont know what that means.

I also get some hand problems with my left hand where i lose feeling in my pinky finger or it tingles on the tip and gets numb, then when i regain feeling then my hand twitches pretty good around my pinky, it also twitches when i use the left hand to pull or carry something and sometimes it feels like the finger wants to bend on its own w/out me telling it. Then i also get the feeling that the left side of my face goes numb and i cant move it like the right side, i dont know what that means but i have attributed that to my anxiety cuz i dont feel it as much when im not thinking about it

I dont know whats going on but I too have told myself that i am dying in a couple of years, ive actually started planning a nationwide trip if the treatment on my back doesnt solve my leg cramps/stiffness/twitching, cuz i want to do that while i can still walk. I AM ONLY 24 AM I CRAZY OR DOES NEONE ELSE SEE SOMETHING ELSE GOING ON? I hope this shed some light on my story, dont know if it would be lyme connected or not.

Andy

 

[clint31]

You have to trust me.... I can't help you if you don't want me to. My symptoms developed from march to july really... thats when it progressed. I am telling you you're not crazy, there's something going on--its just not ALS. I was SURE I had it. More sure than you are now. Believe me. I had more symptoms of it. The twitches. The leg stiffness (and foot arch), night sweats from anxiety or god knows what. My left hand was losing function on the keyboard. I was having difficulty speaking. I was slurring words. I lost my appetite. My muscles burned, ached, and got fatigued easily. And the twitches neverr stopped....... EVER. They were everywhere.

I know how you feel. I know that us telling you isn't gonna make you feel better. It didn't help me as much as I tried. Nothing helped me... even after a clean EMG I still thought I had it. Finally an explanation for everythhing... I wasn't crazy. I had lyme disease and even after that I was still scared of ALS cause Im not brave enough to have it. Yo dont have it sir.

 

[wright]

Andy, you have your diagnosis. Your stress levels could certainly be causing your other symptoms that you're having that cannot be attributed to your disc problems. The simple fact that when you change your position, your symptoms change . . . and this happens within seconds . . . should give you solace.

If you have something else going on other than stress that's causing the other symptoms, they will figure it out. Your burning pain in so many parts of your body sure sounds like it could be a generalized neuropathy . . . cause unkown . . . but maybe vitamin B12 deficiency, stress, viral, autoimmune. I suppose Lyme could be a possibility too.

Stop thinking about ALS because you have been told by people on here . . . and more importantly, your neuro . . . that you don't have ALS. I'm not sure what else you want us to do or say. Call your neuro and tell him/her your concerns. In the meantime . . . RELAX!

 

[massurfer1]

? for wright

The cramps seem more consistent the last couple days and worse twitching and tired legs when i wake up in the morning, can this be caused by the antibiotic i am taking for my ear infection?

Another question, my blood tests came back normal, even my CPK. Now i read that cpk levels are elevated in people with als, is this true in the beginning stages or is this something that is seen after the als has progressed some? And if I do have beginning stages of als, would the emg im taking in 2 weeks definitely show something, or does that take time as well?

One more question not related to als. where do you teach and what do you teach? Saw that you are a teacher and thats interesting to me, i have a few friends in med school and it sounds like that is what you are teaching.

andy

 

[wright]

Again, having worse symptoms in your legs when you awake is something else that points to your disc problem.

I'm not sure if antibiotics can increase twitching . . . but in my opinion . . . it's your stress levels that are making them worse.

CPK levels can be slightly elevated at the beginning stages of ALS and then increased further in the later stages. This isn't always the case, though, because there are some that have very high levels of CPK even in the beginning stages and some that have normal levels. It isn't really something that is used as a diagnostic when it comes to ALS because of the variability and how it can fluctuate with so many other conditions.

If you have ALS (which would include lower motor neuron signs), your EMG will be dirty . . . BUT . . . your EMG will probably be dirty because of your disc herniation. EMG's can be dirty for a number of reasons: pinched nerve, compressed nerve, disc herniation, peripheral neuropathy, etc., etc. An experienced neuro will be able to determine the difference, however.

I co-direct and teach an Anatomy & Physiology course in the College of Science and Math and also teach Physiology in the medical school at a university.

Now go freakin' relax.

 

[Al]

I'd have to agree with wright Andy. Relax. Your symptoms sound more like my wife's herniated disc than my ALS. Clint could even be right about the Lyme disease but that might be a stretch too. I don't think you have ALS. I don't have credentials such as wright but I have a degree in common sense from reading thousands of posts on this and other forums, plus countless hours of research. Go out and have a good weekend.

AL.

 

[wright]

Al, just so you know: I think you have more knowledge about ALS than I do and I think most would agree on this forum.

You have experienced it . . . seen it . . . lived it. Your presence on this forum and what you do for so many here (and I'm sure in your personal life) is immeasurable.

I hope this finds you well, my friend.

 

[Al]

Aw shucks. You're just trying to make me blush. I'm doing OK all things considered. Trying to get caught up. Have been watching Olympics so am behind in reading forums. That Phelps kid sure can swim. Wish he was Canadian.
AL.

 

[massurfer1]

You guys

You guys always use my forums to chat! LOL!

I hope all of you are right, i still have a lot of living i want to do, just want my legs back!

Andy