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[Lollywood]

I have been having problems for about a year. I had necrotic tissue on my toes a year ago but Nifedipine and wound care stopped the tissue death. I had been unable to exercise for a few months and when I started up again (I am a fitness nut) I noticed the muscle on the side of my right calf had disappeared. No amount of exercise ever brought it back. In June the same toes started hurting, so I went to my GP. We had run a multitude of tests already, and I had seen one rheumatologist who told me I just had "a quirky autonomic system" during the necrotic tissue episode. I had not noticed the muscle loss at that time. My GP referred me to a different rheumatologist who has tried to help ever since. She referred me to a neurologist when I lost the ability to move my toes on my left foot. A month later I had lost the same abilities on my right foot. That neurologist said I had neuropathy and muscle weakness, but refused to do the full EMG my doctor had ordered. He said he thought I had a neuroma in my left foot, and when the same thing happened to my left foot, he was not interested, it did not fit his diagnosis. I had by then developed a weird ridge on the left side of my tongue, and when I stuck it out to show the doctors, they noticed it was shaking or twitching. My doctor sent me to second neurologist. He finally ordered the EMG that my rheumatologist had asked for in July. I had it done on Friday. I had started to doubt my own sanity, although my toes have all clawed now and it can be seen on my recent x-rays. I thought maybe I was making too much about nothing. I am not a sickly person, and tend to under report and convince myself I am doing better, but I am not. So I asked the doctor who did the EMG if he was finding anything, as my bloodwork has always been perfectly normal. He said he was. The technician with him said she was learning as well, as almost all the EMG's they do are normal. When I left I asked him if I would have to return, because my hands are starting to do the same thing my feet did, and my neurologists had both said they thought my hand issues were just tendonitis or something unrelated. He said "No, you are not crazy, the same thing is going to happen in your hands and it is all related. You have neurodegeneration". I researched the meaning of neurodegeneration and I am waiting for a call from my neurologist to go over the results. The problem is, I never even considered ALS. Had not crossed my mind. I thought maybe MS, but my MRI's did not show lesions of the oval type associated with MS. So now I am home (I have been unable to work or even run errands since August) and concerned that I may be sicker than I imagined. Sorry this has gone on so long, but finally, here is my request: Can anyone please tell me about experiencing these issues and a clearly abnormal EMG and NOT having ALS? I am not a worrier, so this is uncomfortable for me to admit.

 

[Lollywood]

Sorry, I am a bit rattled and completely that after my feet quit working properly I started having muscle spasm. Almost all the time. You can even see them sometimes and when they started I showed my kids. I told all my doctors about them, but did not realize they had diagnostic significance until I researched degenerative nerve diseases. I also have a limited ability to flex my feet upwards, and when I flex them downwards my legs shake. I am not driving because pushing the accelerator down makes my leg shake.

 

[Alyoop]

Hi Lollywood. I am so sorry you have gone through all this trauma. The road to a diagnosis for many conditions seem more difficult than necessary, thanks to the medical profession all having differing ideas and rather large egos.
The answer to your question is yes, it could be other neurological conditions, but until you get the EMG results explained to you, ALS will unfortunately still be on the table.
So probably not what you wanted to hear, but you sound like a together and in control sort of person. Just try your best to stay positive. The results will tell the story. It sounds like you have both Upper motor neurone issues and Lower motor neurone issues, which is why you have atrophy, weakness, spasticity and the shaking will be clonus.
There are just so many neurological conditions, sharing signs and symptoms. It is a maze.

Best of luck and do let us know what the outcome is. Let it all out here. There are many kind ears listening.

Aly

 

[Lollywood]

Hi Aly!

Wow. I am not accustomed to getting any type of answer so quicky! While most expereinces I have had while being passed from specialist to specialist have been unsettling, I must say that my rheumatologist was the most caring and persitent doctor I have ever met. She refused to diagnose me with something she had ruled out through exhaustive blood, urine, and even stool tests in spite of neurologists sending me back saying the neurological issues were secondary to an inflammatory autoimmune disease. I am generally a very happy lady and have a fantastic family, including my three children and my mom, whom I have cared for my whole adult life. No matter the result, I appreciate every single day and will continue to do so. In addition, even if it ALS I have found that some 10% live ten years, and a few even longer. I am 47 and have had a great life full of love and family. Finding this site may be a real blessing as well, as I have been reluctant to tell my friends and family that I am not well. This is due in part because they inevitably ask "what is wrong?" and for over a year I have not been able to answer that question and partly because I kept telling myself I ws going to get better. So having strangers to talk to until I know for certain is a comfort. I had a friend from childhood come visit me recently. She lives in Missouri and I had not sen her in awhile. She was profoundly upset to see me as I am, and she explained that she was angry I had not told her about my condition. Do you have any advice about how to share the news of whatever my diagnosis is with people who love me? I want to make this as easy on them as possible. My brother came for a visit 3 minths ago, and he is moving in this Friday, after seeing my situation and realizing I cannot shop or do simple daily activities. But he was angry too. How do you tell people something is up, before you know what it is exactly?

 

[Lollywood]

Oh! And my name is Lolly. Nice to meet you!

 

[Alyoop]

So Nice to meet you. Its great that you have such a loving family. Dont forget not to give in to the fact it may be ALS yet. You need to wait for the results. Regardless of what is causing the problem, the issues are the same. You have increasing difficulty, with what we call at work (am a neuro nurse as well as having ? PLS), Activities of daily living. Its very hard to accept that things are changeing, and that the things you saw in your future, may not quite go as planned. I think for me that was the hardest thing to accept.
I struggled with countless Doctors over 2 1/2 years. I am married to a neurologist, who was always more worried than me! I never knew what to tell my friends and family, I just said that I had something wrong and it was taking ages to find out what. Its the most difficult part of the whole thing, NOT KNOWING. Everyone sees you looking healthy. They just cannot understand.
It sounds like you are so lucky to have people careing enough to lend a hand. It doesnt matter that it has no name at present. You have to let them know that something is up and you are having trouble copeing. They love you, they deserve to be given the chance to offer help. Having an illness is nothing to be ashamed of. I have struggled with the shame of letting my kids down. I am not sure why cause it makes no sense. Now I have told all my friends and family. I just got an inkling from my Dr that it could be PLS, then decided to sit on the phone all evening. Its now out in the open, and left behind. It freed me up to get on with life , dealing with problems if and when they arrived. It doesnt dwell on my mind so much, because everyone knows. Try it I am sure you will feel a release.

I am not a good writer and get "all a jumble," so hope it makes a bit of sense.
feel free to ask away. No problem
Aly

 

[Lollywood]

Thank you so much. It helps just knowing someone "gets it". I worry about letting my kids down too. Although I know, intellectually, they just want me around regardless of how strangely I walk now! That is just a mom thing I suppose. I am going to try to be more open about what is going on, thank you for the advice!

 

[Alyoop]

My kids don't seem to notice anymore. Its just become normal for them to walk slower and when I am really exhausted or the parking is bad, I use my mobility card. Its hard to use but can help on a tiring day.

Have a lovely Christmas. Not long now. NZ is the first place in the world to get Christmas day (apart from antartica).Just a useless fact to make you smile

Aly

 

[sadiemae]

Hi, I sent you a visitor message. Once you have 10 posts you can Private message. I live in Reno also, let me know if I can help! HUGS Lori

 

[Lollywood]

Hi Aly,
I walk really slow as well and get so tired that the following day I sleep all day. My kids aren't used to waiting yet! Happy holidays to you.
I see my neurologist on Tuesday. His office called today and asked me to come in to talk about the EMG results. Now I just have to wait five days.

 

[Lollywood]

Hello fello Reno person! I do not know what a visitor message is, but I will find out. I had a hard time finding Reno groups for support. Can you recommend a doctor in Reno with experience in these matters? I am a bit worried, because when my labwork has been ok, the docs just tell me on the phone. I haven't had one yet where they make an appointment to have a conversation with me about them... Of course I haven't had an EMG before, and I already know the doc found problems.

 

[sadiemae]

Contact Dr Timothy Louie #324-2234, or his nurse Lisa Jonke. Her # is 982-7354. Unfortunately we are served by ALS of Nevada, which is not affilliated the the National ALSA, and because of financial problems they have no one in the Northern Nevada region. We go to the Forbes Norris ALS clinic in San Fran, because they offer so much more than the local clinic, although they are wonderful wonderful people here in Reno. Unfortunately with the snow we will not be able to go San Fran for a few more months, but we do have the local VA. Once you get 10 posts, I can private message you my number and help you in person. HUGS Lori To go to your visitor page, just click on your name that is in blue. The same for going to my visitor page. Just click on my name, and view public profile.

 

[Lollywood]

Thank you so much for the kind words. I guess I am still hoping this is something else, but the more research I do, the more I find that symptoms I thought were no big deal fit unfortunately well with this type of diagnosis. Knowledge is power though, and I am still hoping for a more treatable outcome. I have been tested for almost everything else and those diseases have been ruled out so far. How old is your husband and how is he doing?

 

[sadiemae]

Hi Lolly, Les is 46, was DX a Yr ago, although his onset of has been estimated to have been Oct 07. He is still mobile to a point, and has a feeding tube, but still able to eat by mouth. The fatigue is his biggest problem. Are you seeing Dr Louie?

 

[Lollywood]

I see my neuro tomorrow at 10:45, so I am just looking forward to getting some answers and not worrying about it in the meantime. My doctor right now is Dr. Raps. I have only seen this neuro once, but he seemed very thorough and he did order the tests, so I am hoping he will want to work with me. I will let you know as soon as I do what is up! I spent the day in the living room yesterday and did some light housework, so today I just can't wake up! I made myself a comfy nest of warm blankets and hot chocolate and I am just going to allow myself myself to sleep and recover as much as my body tells me too! I am not at all accustomed to being so dang tired, so I am working on that!