Waiting for neuro visit--scared

[Moonmark]

Hi, everyone, I posted to the forum last week, but think I may not have done it correctly, so trying again. I would love to hear back from some of the more veteran folks to see what they think. I am a 43-year-old woman who began having some stiffness in the fingers of the right hand a few months ago-- 3 or 4. went to primary care doctor who did blood work, Lyme disease test, and test for arthritis-- all normal. since that time, my problems have gotten worse. The stiffness developed into weakness of the right hand, fingers, wrist, and forearm, which is now spreading to the left side. I have trouble with fine motor movements, such as doing zippers, buttons, and opening envelopes. My fingers just don't cooperate.I am having difficulty wiping myself after using the bathroom (sorry to be graphic). I also am starting to have a bit of trouble lifting pans and such and need to use two hands. About a month ago, I also started to have muscle twitching-- in my hands, feet, calves, and face. They are not present all the time, they come and go. I have also had some brief episodes of shooting pain in my tongue. In addition, I have developed some tightness in the muscles of my legs and feet-- particularly in the hamstring and calves, and weakness in the ankle of the right foot, both in the back of the ankle, and on the top part of the foot. I am having trouble walking long distances. The last time I tried to go for a short hike, I was limping back to the car. (I have always been an active person and before this, able to hike, bike, swim, etc, with no problems). for some reason, it is easier for me to ride a bike, but any physical activity wipes me out. I had a brain MRI done the other day, but will not get results for another 10 days when I see the neuro. He will also likely do an EMG, according to his office assistant. I am really terrified about what is happening to me, because it does sound like ALS, from what I have been able to discern online. I have a 2 year old daughter and a 12 year old stepdaughter and I am not handling things well-- I am getting depressed and crying a lot, but trying not to do so in front of them. I am actually feeling very guilty for choosing to have a child so late in life, when the potential for disease increases. I know it doesn't make sense or help any, but I cannot help feeling this way and cannot stop thinking about the possibility of my beautiful daughter having to go through life without a mother. She is the love and light of my life. If you can offer any guidance, I would really appreciate it. thanks--Sandra

 

[liz]

Jmho

I can understand why you are so apprehensive about your physical condition. The dread people feel in situations like this can be unbearable. Consider asking your GP to prescribe some anti-anxiety medication to help you manage the intense stress you are experiencing.

Also, don't fear the EMG and nerve conduction tests. They are nowhere near as bad as they sound.

Finally, try not to listen to people on forums who speculate about what may be wrong with you. It will make your head spin. You are on the right path to getting the answers you need.

 

[rose]

Sandra,

I just wanted to welcome you to the forum, and to second what Liz said as far as not worrying about the NCV and EMG. These tests are really not that bad.

There are so many things that you could have going on other than ALS, please try not to expect answers too soon, it takes a long time for the diagnostic process for a lot of people.

Many women have had little ones after the age of 40. I would have loved to have had more children, so put any regrets about your age aside. We can't know what the future holds for us when we make life decisions. Wasn't it John Lennon who said that life is what happens to us when we're busy doing other things....

Good luck to you, and let us know what you find out.


BTW, Its fine to be graphic on here 8)

 

[Moonmark]

What to do?

Hello, thanks to you both for responding. I am trying to get a grip on my emotions while I wait for the additional tests and neuro visit. But one thing I would like to know is: how do I explain to other people what is happening to me, when I do not have any diagnosis? for instance, I have suddenly discovered in this warm weather that I cannot seem to walk very well in sandals, particularly the "strappy kinds." I bought a new pair of sandals in March (nice ones, too) and I am stumbling around in them and tripping up a bit. in general, I am finding I cannot wear shoes that do not have any ankle support-- this is a fairly new thing. I have also been having trouble holding a pen while interviewing people (I work from home as a freelance writer and editor), so I went out and got one of those prong pens that don't require a strong grip. I also bought wrist splints for typing, which seems to help, as I mentioned that my wrists are weakening. I find it totally CRAZY that I am already making these adaptations to limitations that are starting to develop, yet I have NO IDEA what is happening to me and can only blindly stab at a diagnosis based on what I have read online and its consistency with my own symptoms. I also find it odd that things can be somewhat better on one day and suddenly worse on another, but never going away entirely. It also seems that it takes a long time to get a diagnosis, but how does one function, explain limitations, get help, support, etc. from other people and agencies, when you do not even know for sure what it is that is wrong with you? I really appreciate any advice you can give.

 

[BethU]

Sandra ... in talking to others about your situation, you can just say, "I'm having some health problems and am being evaluated by a neurologist." Or, "I'm having some neurological problems right now, and going through a lot of tests to see what it is."

I'm sorry you have to go through all these tests, and have ALS as a possibility, but it sounds like you are doing the right things. Finding adaptive devices is great, no matter when the outcome of the tests. If you need something to help you function, short term or long term, get it.

This waiting period is the worst part of the process. I'll be praying for you and hoping for a good visit to the neuro. Hang in there.

 

[rose]

Sandra,

I had no idea, before I started with my own illness, how many people are dealing with an unknown condition. Who knew? certainly not me. After about the first year, my family and friends started to (only semi-jokingly) say that I was going to end up being an episode on Medical Mysteries or House. I think that we, as a people in general, only expect text book symptoms for a diagnosis, and in truth, if it only were that easy.

I want to reassure you that what you've described as markers for how you know something is off for you does not necessarily point to ALS or any other ominous diagnosis. However, I've experienced some of the same (the wiping thing, was wondering if my behind was getting bigger or something LOL) the sandals problem, it was specifically flip flops I could not walk in, kept thinking I perhaps had gum on the bottom of my shoe ... my point is that when we notice things that interrupt what we know are normal for us, it can be scary just because we don't know what it is. There are many many people who end up in this category, of something being wrong, and being faced with an overwhelming array of tests and possibilities of causes.

As far as what you tell others, much of this can be dependent on what your relationship is with them. If they're an agency or someone you need to be sympathetic to you needing extra consideration, then say you're being evaluated for various possible neuromuscular conditions, throw some acronyms at them, MSA, MG, MS, PD, ALS, and kind of trail off, saying that you're just in the "testing phase".

Obviously if its someone in your circle of family and friends you can be more candid, say you have an unclear presentation of something, your doctors aren't sure what yet, and you've been advised it is normal for it to take several months of testing to get to the bottom of it.

Good luck to you, we're here for you, and we've all been there one way or the other, in varying degrees so we can relate to what you're going through now.

 

[Moonmark]

ANOTHER QUESTION-- this one about PAIN

Hi Rose, Liz, and Beth,

thanks again for responding to my posts. It is comforting to hear your words of encouragement and your advice is very helpful.

I have a question for you (and anyone else) about pain: all of a sudden I am having some bad shooting pains in my thigh muscles. I went with my family on an outing to the zoo yesterday and was on my feet quite a bit-- it was pretty uncomfortable and scary and I wonder if this is yet another symptom pointing to a neuromuscular disease. more twitching last night (fleeting twitches in back and feet, and a sort of constant fluttery or vibrating feeling in my calves) and then another sort of shooting pain on inside of thigh when bending down this morning.

it seems like things are a lot worse when I am moving around than when I am sitting. Still another (very long) week to go before neuro appointment.

what do you think?

thanks again-

Sandra

 

[liz]

The short answer is..............maybe but then again maybe not.

Pain comes with some neuromuscular diseases and also with many other conditions. Until you have all the necessary tests to rule various diagnoses in or out, the presence of pain in addition to your other symptoms is not enough information to say if you have a neuromuscular disease or not.

I'd tell you to try not to worry if only that advice weren't impossible to follow. Sorry you have to go through this.

 

[rose]

Sandra,

Dealing with the unknown is hard. I wish I had something concrete to say. You can take comfort in that a good neurologist will know what matters and what may be inconsequential to what you're experiencing.

When you finally make it through this long week, you should (hopefully) get some feedback as to what the neuro needs more clarification on (read: more tests) and what the neuro thinks is not a likely cause.

Many people think the wait and uncertainty during the investigation ~ where you're at right now ~ is hardest of all.

Try not to "research" too much. The things that matter are still the things that mattered before you started having problems. You know, your family, and other interests that make your life unique. No matter what it is, YOU have IT. It does not HAVE you!

Is your appointment this coming Thursday?

 

[BethU]

Sandra ... I second Rose and Liz. The waiting is the hardest part. Once you get a diagnosed and a "name" for whatever is going on, you can then start to take action: consider treatment options, etc., etc.

For what it's worth, this does not sound like the onset of ALS to me. Except in Benign Fasciculation Syndrome (which, as it implies, is a benign condition that is annoying but not progressive), twitches do not mean much. They are very much a minor issue in ALS, and as I understand it, don't appear at the outset. Neither do sharp, shooting muscle pains. The weakness in your hands could be a number of other things; there are so many overlapping symptoms with these conditions, only your neuro can tell you what is really going on.

Don't worry about the EMG. On a pain scale of 1 to 10, I'd put it at about a 2.

Hang in there.

 

[handinhand]

My heart is hurting for you at this moment. The wait is very hard to endure... I am so very sorry for what you are going through.. sigh! I will be thinking about you this week and keep you in my prayers..... Linda

 

[Moonmark]

another weird symptom

Hello, again,

I hope I am not troubling you all with the repeated description of my symptoms, but something is happening that is really scaring me now. as if were not scared already. but this is reigniting my fears about ALS.

the last few days I have experienced some straining/warbling in my throat area when yelling for our two dogs to come. for some time I have had a "tickling" sensation in my throat, but I attributed it to seasonal allergies. I am also feeling a sense of "thickness" in my throat or neck area and sort of under or on my tongue when swallowing. does this stuff sound like bulbar symptoms? why would everything be happening so quickly (if this is ALS)? am I going to suddenly be unable to speak over the next month or something? The potential loss of my voice scares me more than anything else-- how would I read to my 2-year-old daughter, or teach her new words, or sing lullabies to her? It is devastating to think of this possibility. I can move my tongue around fine, it seems.

I have not had any muscle cramps since the last time I wrote about, last week. Twitching continues in my left hand off and on. On Saturday, I went hiking at a local mountain range and was pleased to find I was able to do it, no problem. but the next day I was extremely fatigued and had to rest several times during the day.

I know you can't diagnose me and I understand everything about needing to wait to go through all the testing and such. and, intellectually, I know that whatever will be, will be. but I am scared about what is happening to me, primarily in the way it will impact my young daughter. I also feel I have no one to talk to about it-- my husband does not want to hear about all these things, it seems, until there is some kind of diagnosis. I think he is also in a state of denial about what is happening. I guess it just helps me to vent here.

thanks for listening,

Sandra

 

[liz]

You seem to be noticing more symptoms every day. Is it possible that you are becoming hypervigilant about your bodily sensations? That would be completely understandable at this point. You have real symptoms (of something) plus anxiety (which can manifest in physical ways) plus increased awareness (of what symptoms could emerge if - HUGE if - you have ALS). Please don't think I'm suggesting you're "nuts". Well OK, maybe I am, but only as nuts people normally are in these circumstances.

If it's any consolation, my husband handled things the same way yours is. I spent a year schlepping around from one appointment to another on my own trying to get a diagnosis. He didn't believe there was anything seriously wrong until I dragged him along for the second opinion and he heard it straight from the doctor.

 

[Moonmark]

Yes it's definitely possible I am becoming more hypervigilant. nuts: quite possibly. my anxiety and worry about this is off the charts. the weird voice thing definitely freaks me out, though, and I have to say, it stopped my husband in his tracks. it's happened a couple of times when I have yelled for the dogs and my husband looked worried. it's like a weird straining/strangling kind of sound.

anyway, my regular speaking voice is fine, so I will just try to focus on that and try not to freak so much. two more days til my neuro appointment.

thanks again for listening-

Sandra

 

[rose]

Sandra, You already know what a number The Uncertainty has done to you, just trust that whatever is wrong, areas that are actually not functioning correctly will be duly noted by the neurologist.

Most of us don't live lives entirely without some sort of health interference, its just how it is. I sincerely hope that your ALS fears are able to be put to rest after your upcoming appointment, Just be prepared that no matter what this visit shows, you most likely are not at the end of your search for answers ~ for a name to put to it ~ I'm not trying to discourage you, just to prepare you that when one enters the realm of neuromuscular problems, the answers don't usually come quickly.

Men rarely respond like they're "supposed to" as decreed by sentimental movies. My Dear(but not actually my husband) said to me, trying to uplift me of course, that yes, I have ALS, but everyone dies of something, which we all know, and at least I wasn't a formerly famous covergirl and acting icon of the '70s who now had anal cancer, with my picture plastered on the front of a bunch of magazines, proclaiming how I had the anal cancer. He had a good point.