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mamaoftwo

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Hi there
I am a first time poster but a long time lurker. I have finally gotten up the courage to join you. As crazy as it sounds, I was somehow afraid that if I joined the ALS forums, I'd be jinxing myself as it were into getting the final diagnosis - which of course, scares me as much as any of you. It has been a long journey so far (more than a year) and like many of you, I am still undiagnosed but the neuro now at least says he knows there is something wrong instead of telling me I had anxiety which is what happened the first time!

I feel like I know so many of you already - Jamie, Leslie, Ann Marie, Pat, Cindy, Al, Lou etc etc. I have followed your stories closely, watching your lives unfold as I try to make sense of what is happening to me. Before I start, one comment - you are an incredibly supportive bunch.
So here is my story. I will try to keep it as brief as I can but I know it will be long so apologies in advance.
I am a 40 yr old mom of 2 - (3yrs and 4yrs). I first had symptoms a little over a year ago. Started with a strange tremor in my thumb. I disregarded it. Put it down to a trapped nerve or something and just thought it might go away. This was in June 06. By the Fall, I had started to have odd sensations in that same arm - like someone was pouring freezing water down the inside of my arm. It would ache sometimes too so badly on occasion that I thought I was having a heart attack! By Nov, I finally decided to go see my internist who immediately referred me to a neuro. He examined me - said my neuro exam was totally normal and that I had a benign condition called Essential Tremor (which my grandmother had). He told me it may get gradually worse over the next 10-20yrs. Fine, I thought, I can live with that and off I went.
Then about a week later, I began having numbness and tingling in my right hand. Called my internist again who said that in view of the clean neuro exam, she wasnt concerned and sent me to a physiatrist for physical therapy.

So then comes the physiatrist who examines me and says, clean neuro exam but we will do an EMG to see if we can see what is going on. He comes up with an abnormal EMG study and tells me I have a cervical radiculopathy. He says he can see that I have some atrophy in my left hand - I had never noticed it! He gives me steroids, painkillers etc. I take them, it does nothing.

Back to the internist, before starting the physical therapy and she says we need to do an MRI of brain and cx spine. Both are clean. Then in Dec, the left side of my face suddenly and inexplicably goes numb - not entirely numb because I can still feel my fingers but it has what I would call altered sensation - as if I were touching my skin with gloves on or something. Make sense?
I call the physiatrist and tell him what is happening since I had an appointment with him that day anyway and he tells me that most likely I have either MS or ALS! I am FLOORED!
So I get sent immediately to an MS center where they run all the tests and say with 100% certainty, NO MS.
By this time, I have the odd pains in my arm, a burning sensation to add to the cold one!, a strange tickling sensation in the palm of my left hand that never stops, pain in the thumb pads of both hands, migratory numbness (across my neck, backs of my hands etc) and some twitching - which started in my back and would appear randomly all over my body.

So now its Feb 07 and a much more frightening diagnosis may be on the table. The ALS tests begin. I get sent to Mt Sinai in NYC. They run an EMG and did a neuro exam and said absolutely NO ALS. I was so incredibly relieved as you can imagine. But they couldnt offer any explanation and said that they have no idea why the physiatrist said my first EMG was abnormal since the one they did was completely normal. I asked about the atrophy - they said they could see none!

I try as best I can to go home and get on with my life. Whatever this thing was/is, was not going to kill me. In the back of my mind, it still niggles that it may be something very serious. And of course, the physical issues remain unresolved. I start to have trouble sleeping. Internist prescribes ambien.

By April, I decided I needed a 2nd opinion and went to Col. Presb. ALS clinic in NYC. I saw the Neuromuscular fellow there who said the usual things - pain, numbness, sensory issues are not found in ALS. "Dont know what this is but here is some gabapentin for the unexplained nerve pain". Tells me "no ALS, go home". He pretty much said I was wasting his time. He did offer to repeat the EMG at their center for my own peace of mind so I did it.
Again they said it was clean though a strange thing - when they were doing it, I could hear this odd thumping noise which wasnt there on my previous EMG. They told me it was just "a motor unit firing" and was totally normal. Nothing to worry about. But it did worry me. i thought the muscle was always supposed to be silent unless there is something very wrong.
The head guy there (Mitsumoto) reviewed my EMG and said "No ALS".
I was sent packing again.

By this time I have added a whole new problem. My family think I am going totally insane pursuing this when 2 docs have said its not ALS. They tell me I am obsessing and much like you experienced with your wife Jamie, my husband thinks I need to listen to what I am being told and give it up. I think that this is one of the hardest things we deal with. Knowing there is something really wrong and our partners/ families not being able to see it.

So then in April I begin having burning sensations across my scalp, in my throat and my tongue starts to ache and burn. I also noticed that my twitching has increased and that I am beginning to sense odd movements in my tongue (only at night when I am trying to fall asleep). I call the neuro at Col, Presb again and he says "no weakness, clean EMG, clean neuro exam - twitching means nothing in of itself".

But the pain in my throat gets so bad that I am taking painkillers all the time and putting ice packs on my tongue to relieve the aching. I felt like my tongue was too big for my mouth and I would bite it occasionally when talking. No slurring as such but felt like my mouth was getting fatigued as I tried to talk. My throat would go from mildly painful to really really sore and scratchy.

My internist sent me to an ENT who said maybe reflux. I took the pills. NOTHING!

Back to the neuro at Mt Sinai who at least had listened to me and was kind. He didnt like what he heard and said he wanted to run more extensive tests. So he sent me to an ENT and speach/lang pathologist. Had a swallow test and some kind of test where they check your sensory response in the throat.

They find something wrong immediately. I have a right side vocal cord weakness or partial paralysis. He said that it was most likely caused by a viral infection and wanted me to do rehab with a physiatrist. FULL CIRCLE IN 9MTHS and still no answers. He said that he had no idea why I had the other problems.

I went back to the neuro who reviewed the report and said that he still thinks it isn't ALS (note that delivered with way less than the original certainty) and says he wants to run more tests. So I have just had MRI of throat, chest, brainstem plus CT of brainstem with contrast and a ton of bloodwork. I am expected to see him at the end of the month to review all the tests and find out what comes next.

So here we are today. My husband thinks I am crazy to be as he puts it "obsessed with ALS". I am certain there is something sinister going on here. Even the neuro said that he knows there is something wrong but he doesnt have a name for it yet. I should add for anyone jumping on the lyme, rheumatoid stuff etc, I have done all that bloodwork and passed with flying colors.

My symptoms today are:-
- pain/burning/discomfort in my arm and throat/tongue
- frequent throat clearing and feeling like there is something stuck in my throat
- aching in my hands
- significant atrophy in left hand which is now visible to my husband but strangely no weakness yet in that hand
- bodywide twitching but I have noticed a huge decrease since starting the gabapentin. the twitching is mainly at night and will be one in the foot, one in my leg, one in my tongue, one in my arm, one in my hand. Very random, very widespread and rarely more than one or two twitches at a time
- tremor in left thumb continues but happens in other fingers too now
- shaking or vibrating sensation in my arms and sometimes my legs especially if I lean on my arms like when i am pushing the stroller.

What I don't have (yet):-
- cramps
- weight loss (in fact, have gained weight on the gabapentin which my husband says is good since I had dropped to 110lbs)
- clinical weakness anywhere but I do fatigue easily - was also told to expect that on gabapentin so who knows
- problems with swallowing, at least I dont think so.
- balance issues - no tripping or falling

So there you go. I told you it would be long. Sorry. I'd love to know what all of you think.
Jamie and Leslie, your stories gave me hope that maybe just maybe I dont have ALS but I do have visible hand atrophy now so as Ann Marie said in one of her posts "I think my goose is cooked". I have done all the things you have done - staring at my tongue in the mirror, walking on my heels/toes, home version of the babinski etc etc. I am clueless, scared and feel pretty much alone with all this.

Thanks for listening/reading. It will be good for me finally to have someone to share all my fears with. It is hard to navigate this journey and feel sick with fear but have your family telling you everything is just going to be fine. i am sure you know what I mean.
 

patricia1

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First of all I have to say ALS doesnt persent with any of the symptoms you are saying
Second of all What ever you are discribing is really not very debiliating. So If I were you I would try and keep busy and see if you can ignore your Symptoms.
Third of all I have to agree with you MD you should continue seeing a therapist and maybe take a antianxiety drug and see is that helps. If all fails I would go up to John Hopkins Or Philly and see a ALS clinic. I think you have a new adjustment in life with two very young children close together ,Which is not easy. I am not saying you are crasy I am saying you dont have any symptoms of ALS maybe you should look into something else Take Care Pat
 

Al

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Hi there. Welcome to our little group. Sorry you think you have ALS but I have to agree with the others. There may be something going on neurologically but I too don't think it's ALS. No ideas what it might be but it sure doesn't sound like typical symptoms of ALS.
AL.
 

mamaoftwo

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Hi everyone - first of all, thanks for responding. Secondly, I am really sorry if my post is upsetting to any of you. I really hope it wasn't. It is hard because on the one hand, people like me seek advice/support but don't want at the same time to sound like we are mad hyphochondriacs who just have an anxiety issue which is, of course, utterly offensive to anyone who has already been diagnosed.
You are right Pat, in comparison to what other people suffer my symptoms are not that debilitating. But didn't you also have symptoms for a long time that weren't that debilitating before your diagnosis? I guess it's all relative. Compared to a PAL, my symptoms seem like nothing. I really do appreciate that. All I know is that I keep adding something new to my list of issues and so far, no answers except for the vocal cord paralysis. The rest no-one can explain.
I am hoping that this new round of tests sheds some light. The neuro did mention things like brainstem tumor which I immediately thought would be better because they could operate but in his words "no, you don't want anyone messing with your brainstem". So we will wait and see.
Meantime, during my last EMG there was some discussion among the technicians as to whether ambien or any other gaba inhibitor could affect the results and there didn't seem to be concensus. It makes sense if you think about it that anything that slows down your neuronal responses would affect your EMG. My first EMG - the abnormal one - was done when I hadn't been taking any medication whatsoever. By the time I had the 2nd one, I had taken both ambien and ativan (for anxiety). At the time of my 3rd, I was taking gabapentin/neurontin. The neuro, when i asked him, said that he wouldn't expect to see any effect on the EMG but who knows. There seem to be so many unanswered questions when it comes to neurology and even within ALS itself, so many variations in presentation.
Thanks anyway for listening and responding. I really appreciate it. And again, apologies if my post came across as insensitive.
 

Al

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No offense taken. Not by me anyway. You have some legitimate concerns but I don't think it is ALS. We're not doctors, we're just offering an opinion to someone with a problem. That's what we do here. Try to help with support and information.
AL.
 

patricia1

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mamaoftwo said:
Hi everyone - first of all, thanks for responding. Secondly, I am really sorry if my post is upsetting to any of you. I really hope it wasn't. It is hard because on the one hand, people like me seek advice/support but don't want at the same time to sound like we are mad hyphochondriacs who just have an anxiety issue which is, of course, utterly offensive to anyone who has already been diagnosed.
You are right Pat, in comparison to what other people suffer my symptoms are not that debilitating. But didn't you also have symptoms for a long time that weren't that debilitating before your diagnosis? I guess it's all relative. Compared to a PAL, my symptoms seem like nothing. I really do appreciate that. All I know is that I keep adding something new to my list of issues and so far, no answers except for the vocal cord paralysis. The rest no-one can explain.
I am hoping that this new round of tests sheds some light. The neuro did mention things like brainstem tumor which I immediately thought would be better because they could operate but in his words "no, you don't want anyone messing with your brainstem". So we will wait and see.
Meantime, during my last EMG there was some discussion among the technicians as to whether ambien or any other gaba inhibitor could affect the results and there didn't seem to be concensus. It makes sense if you think about it that anything that slows down your neuronal responses would affect your EMG. My first EMG - the abnormal one - was done when I hadn't been taking any medication whatsoever. By the time I had the 2nd one, I had taken both ambien and ativan (for anxiety). At the time of my 3rd, I was taking gabapentin/neurontin. The neuro, when i asked him, said that he wouldn't expect to see any effect on the EMG but who knows. There seem to be so many unanswered questions when it comes to neurology and even within ALS itself, so many variations in presentation.
Thanks anyway for listening and responding. I really appreciate it. And again, apologies if my post came across as insensitive.
My first symptoms were slurred speech ,It change my whole life The way people looked at me when I started to talk at work patients thought I was drunk I couldnt talk on the phone Stangers would hang up on me ,I couldnt order a pizza over the phone or talk into a burger king machine Icouldnt get information from a operator over the phone I started to avoid talking in public Is that debiitating I THINK SO! And of course you never take any medication before . EMG you hang on to it and take it after the test if you needed I do not find you insensitive at all Just a very worried person and I feel for you I have been there But as I said before you show no evidence of ALS. Good Luck Pat
 

ltr

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Hi momaoftwo - I really feel bad for you, because I can completely understand how rotten you feel. My support system is nil, too, and looking for someone to lean on can be almost as challenging as the illness. Please don't apologize or feel as if you have written anything to upset the forum. You are obviously very ill and even though you haven't been handed a diagnosis of a terminal illness, I'm sure death has crossed your mind. As it does mine most waking hours. All I can say to you is, don't give up....be your own advocate, get the tests you need, find the doctor who listens and get a diagnosis. A lot of the neuros want you to present as a "typical" patient with the "typical" positive tests. When that doesn't happen many of them toss you aside like a piece of wilted lettuce! Do your research and get the docs to run and rerun the tests, because without them you won't get anywhere. I wish you luck and write us often. ~Leslie
 

mamaoftwo

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Oh you are right Pat, that is debilitating. Sorry. I don't have strangers stare at me or people hanging up on me etc. I do struggle to hold a conversation or read a story to my little girls without my voice wearing out on me. I sound hoarse and raspy a lot of the time, and quiet too - people tell me to "speak up". I can't. I just say that this is the best I can do. But you are absolutely right. No-one thinks I am drunk, they just think I have a sore throat - which of course, I do but not in the way you would with a cold or something.
Re the meds question, I think it's perfectly valid. If you have ever taken any of these meds you know that they have a half-life and they don't just drop out of your system if you don't take them on the morning of your test. In fact, some of them are in your system a very long time after you stop taking them altogether. Also, if you have been taking them for any length of time, taking them regularly is vital because you have to keep levels constant or the sudden decrease can cause seizures amongst other things. When you do stop taking them, you have to wean off so as not to cause problems. What I was asking was if anyone had heard of them affecting the emg even though the neuro didn't think so.
 

patricia1

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I take xanax at betime and the night before the test I dont ,I just would think if it calms you down it would calm you reflexes and nerves. I dont think you would get withdrawal in one day What meds are you on regularly.
 

Sammantha

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I read your story and was wondering did you have the throat pain before or after starting the neurontin. I took one neurontin pill and it caused me to have a severe sore throat and sinus inflammation. I was really dizzy and felt like my head was going to explode.... I never took it again.. Luckily the symptoms went away after two days... Neurontin has a lot of side effects look them up. It soundsl like you might have had a virus that has attacked your CNS system. I think that is happening more and more often and doctors are not sure of it.... I have chronic epstein barr which i think has caused my illness..... I was exposed to a great deal of mold and i did not know i was allergic to it... So for a year i stayed sick which lowered my immune system enough to reactivate the epstein barr virus which caused mono in me at the age of 11. Two years into that i started with twitching and body ache...... My diagnoses was hard because of my severe allergy to mold added on to the symptoms and signs of ALS. The only thing is though when i am not around that allergen i do not have upper and lower respiratory sickness's but i constantly have the ALS symptoms and progression of muscle wasting... That never subsides. What i am trying to say is you could have more than one thing going on and doctors will want to put it into one neat category.... Have you seen rheumatology specialists? They deal with a lot of autoimmune conditions that can cause neurological complications, like the sensory ones you describe... DO NOT APOLOGIZE for what you feel and your fears, this forum is for that,,,,,,, people in our lives dont want to hear it, so most of us keep it bottled in and that is not good.........Sam
 

mamaoftwo

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Hi Sam - thanks for the reply. Actually the throat thing came before the neurontin. It started with a burning pain in my throat and tongue and got worse from there. The neurontin is the only thing that makes it bearable. When I am coming up to my next installment, I can't wait for it. It takes the edge off the pain and eases my tongue pain enormously.
The ENT who found the vocal cord issue told me that I would have, to use his words "all sorts of weird ass stuff going on" - all the stuff I described, he said was caused by the nerve damage in my throat - the pain, the burning, the choking sensation, the feeling that I am breathing burning hot air etc. I also get burning pain in my ears sometimes. What he could not tell me was why I had it.
I know it has some weird side effects but it has been a god send for me. It has really helped with the pain and has definitely reduced my fasics which were 24/7 and are now there but much weaker. I am mostly aware of them at night and daytime, they dont really bother me so much except for the odd annoying one here and there.
 

pldo

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I too have been told anxiety. Drs seems to say that when they want to get the next insurance check. I too have the throat pain and the trouble swallowing, no weakness, and the twitching. I am sorry what you are going through.
 

janf

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Hi Mama, I Was Diag Sept 06 First Diag Was April 06. Anyway, My First Throat Sympton Was Weak And Raspy After A Neck Surgery From Then On It Went From Weak And Raspy To Slurred Nasel Sound Like I Had A Nose Cold To Slurred And Drunk Sounding. Hope This Helps. Jan Franks
 
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