Very dissapointed - depressed and scared

Hi all. I originally found this forum after I had a little episode that frightened me. Can anyone tell me if it is possible that ALS starts out with numbness, weakness and tingling in one leg? I have had this problem for a couple of months. I went to the neurologist and was cleared for stroke. No other explanations to what was happening to my leg were given. I went to my general practitioner and she sent me for an MRI of the lower lumbar and ta-da! I have a herniated disc at L5/S1 that she says is the cause of my leg weakness and numbness. She wanted me to follow up with the spine ortho doc which I did last Friday. He says my herniated disc is not "that bad" and that he doesn't know why I would be having trouble with my leg. Now I'm back to square one and feel frightened again. All my reflexes were tested and walking on my heels, toes, etc and everything LOOKS okay but it doesn't FEEL okay. When I'm walking along it feels dead. Sometimes I lose my sandal when I walk or it drags a little like I'm about to trip. This never happens when I'm "walking" for the doctors. The weakness, numbness and tingling comes and goes. Today it's really bad. It feels dead and yesterday it was about 98% normal. I'm distraught, anxious. I'll try to be specific with my questions and maybe someone can help. Please know it's very much appreciated. I have to wait six more days to see the GP again. It's so hard to be patient. I forgot to mention all bloodwork came back normal. I was tested for everything!

Is numbness, tingling and weakness in one leg a sign of als?
If that is true, is this something that comes and goes (good days and bad) or just gradually gets worse?

Again, I appreciate any advise.

Get your MRI films read by a second neurosurgeon. Spine issues can cause all the symptoms you're having in your leg. There is liquid in the discs, and it can irritate the nerves when it leaks.

Numbness and tingling aren't generally associated with ALS if that eases your mind any.

Thanks notme. That does ease my mind. I just read the thread on trolls. I hope I don't come across that way. My best friends mother passed away from ALS and it was something I will never forget. I realize it's made me anxious about anything that goes wrong. I sure wish she knew about this forum before she passed. I think she could have helped a lot of people and found some amazing support as well.

Marzipan,
Please don't feel bad as you are a not a troll! That thread was directed to a certain member who has changed usernames multiple times and keeps writing the same thing worrying about a condition she does not have.

Anyway, to answer your question. No, tingling numbness is not related to ALS. Take notme's advice and get that film readby a second dr. Any problem with your back can cause an array of symptoms and this could be checked out before having to worry about anything else....not to say you should worry about ALS because your description does not sound like it at all. It sounds like the disc is moved and might be pinching a nerve- causing the weird numbness and 'dead' feeling as you put it. If your dr. didn't see any problems with the walking then there probably isn't..might just be a little anxiety over the situation causing you to walk differently cause you are thinking about it constantly!

Good luck to you, by your description you gave...it sounds like you have a spinal disc issue with possible pinched nerve...not ALS.

You definitely are not acting like a troll.

And, it sounds like you have something going on, but it definitely does not sound like ALS.

Don't feed your anxiety here. Let the docs do their work, even though it can be frustrating.

thanks kmendsley and ktmj. Now I know what a troll is! LOL. Yes, it does get frustrating. BELIEVE ME, I was actually happy when I heard originally it was my back. I was able to get an appt. tomorrow with another spine surgeon and have to chase down my MRI and Xrays. I think you are right ktmj, I'm feeding my anxiety by coming to the forum and reading the posts. Kmendsley, you have a good point about anxiety as well. There is definately something going on but I probably focus on it too much and make it worse. Anxiety is a powerful thing. Every time I walk into a doctor's office, my eye twiches like it's going to pop our. If that's not pure anxiety then I don't know what is! Thanks for the help and support.

Marzipan--I did forger to mention one thing that can help with the leg issues. Talk to your doctor about possibly getting a TENS unit--and see if they can do an EMG or myleogram to be sure it's not from your spine.

When there is pain, we tend to walk differently--which can worsen symptoms dramatically. Even drop foot can be caused by spinal issues. A lot depends on what areas are affected.

Avoid ANY type of back surgery--I'd always recommend conservative treatment before any surgery. As always--a second opinion is warranted. A spine institute offered me surgery and my neuro nixed the idea.

Even something called the SI Joint can cause pain that radiates down the leg. So, continue to think positively that it's not ALS.

There are also medications that can help with nerve pain such as tegretol, topamax, lyrica and a few others. Heat also can help if there are spasms. Have you seen a good medical massage therapist? They are able to tell if there are severe spasms in the back that can definitely cause leg symptoms.

Again--good luck--and no, you're not one of the trolls around this part of the forum.

Thanks not me. That is extremely helpful. I will google the TENS unit and see what that's all about. I'm going into the appt. tomorrow armed and ready for action! I did read that drop foot can be a spinal issue and that's what I feel is happening to some degree but not all the time and surely not when I'm at the doctor's office. It just makes sense to me that it's my spine. I want it to be my spine! I agree with you completely that surgery would be a VERY last option. I work at a hospital and believe me, many doctors go the surgery route simply for the $$$$$. I hate to say it but it's true. I can't thank you enough for your post. I'm going to talk to him about the drugs you mentioned. It's helpful to go into this with a little bit of knowledge. Thanks again for all the good advise.

Marzipan, I was reading a very interesting autobiography last month, by an American surgeon. It is called complications( I think).
It sais something that has really stuck with me.........some people have very bad MRI of spine, showing bulging discs, nerve entrapment and have no symptoms, others have very minor disc disease, with terribly debilitating symptoms. Maybe all Drs should read the book .

Hi Aly, good to hear from you! Are you back home yet?

Marzipan, I also was told I had the disc problem in the same area, but was told by the spine specialist that most people do. Like you, I was praying I had something wrong with my back, which was causing the hyper reflexes in my left leg. But, you mentioned alot of numbness and tingling, which isn't typical for ALS. I had no numbness at all, but other things like peripheral neuropathy do... I'm hoping that you'll find a better answer, and keep us posted! And btw, no, you're definitely not a troll, so don't worry 'bout that as well!

Hi if your are experiencing numbness and tingly that it is not ALS. Als does not affect sensory tracts. Most likely nerve compression secondary to herniated disc or narrowing of the foramen. I'm not sure why dr. didn't think herniation of L5 would not be the cause. It certainly can be. There is a muscle piriformis if tight can cause those symptoms. Are you diabetic, peripheral neuropathy can cause as well as poor circulation or edema in lower extremeties. Definitely not ALS. everything you are feeling is sensory! Relax!

A tens unit helps with pain up to 2 hrs a day dependent upon setting. Tens plus hot pac is helpful for pain. Pens is used for both pain and strengthening . Foot drop can be due to other things. Are you having foot drop or just can't clear your foot? Your gastrocs(calves) my be tight or weak dorsiflexors so you are unable to dorsiflex to clear foot. It could be nerve related. Sometimes in a TKR the nerve is injured causing foot drop.

Definitely not ALS everything you are saying is all sensory. ALS doesn't affect sensory tracts. Herniation at L5 will cause those symptoms. Relax!

Thanks to everyone for your posts. Alyoop, I agree, maybe all docs should read that book. HelenL, I'm not sure what hyper reflexes are but yesterday at my dr.s visit (2nd opinion), he tested my reflexes like the knee and side of foot, etc. I GUESS everything was normal or he would have said something. He was much more helpful than the first one in the way of listening. He seems to think my issue is my back but sometimes I feel I'm leading the witness if you know what I mean. I asked him about MS or MND and he said he didn't think that was my problem. I WANT to believe him and I do but I have a little lingering doubt. He said I'm young, (I'm 42) and that when something goes wrong with a healthy person for the first time in their life, They are generally freaked out about it. I guess that's whay I'm doing. Now that I read your post, peripheral neuropathy sounds very suspcious to me. I have no pain in my leg only weakness, numbness and tingling. I have lovingly now called it my "peg leg" because if I had to guess, that's whay it feels like to walk on one!

I apologize if I come across like a neurotic person. No sya15, I don't have diabetes or having tested positive for anything and I appreciate the fact that ALS is not sensory. I walked away (pardon the pun) from my visit with a prescription for physical therapy to "strenghten my core". I guess my leg is going to miraculously start to work and feel properly again with an exercise regimen? Sorry to sound sarcastic, just can't wrap my mind around that one. I will say this, I feel I have no reason to complain when I know there are many people in this forum that have serious issues and I come across as a cry baby. God bless you all for your advise and talking the time to humor me! You all are awesome.

I didn't think you were a cry baby. i know it might sound weird but core strengthening relieves pressure of the spin(back) Usually with disc we focus on core. Mackenzie exercises. Also if you are going to outpatient facility. They will probably have tracionwhich will help open the space to decrease nerve compression. Some people love it others don't. Your symptoms are definitely due to radiculopathy(compression on never due to disc herniation.) Do you have pain in back that radiates down leg? Does standing and lying flat reieve the symptoms. With a posterior herniated disc extension(such as standing makes you feel better) and flexion(sitting makes it worse) I hope this helps a little!