Very Scared and Confused

[baxter]

Hi all,

I've been lurking on the site for about a month now. I'm worried about the syptoms I've been experiencing and frustrated with the neuroligists I've met with so far. I hope some of you may be able to provide with some insight.

I've had widespread fasciculations for about a month. I wasn't too concernced until I started feeling numbness and cramping in my right hand (mostly the middle finger) a couple of weeks ago. I have burning sensation in my thighs + arms, which are there for most of the day, and get pins + needles in my hands + feet at least 3/4 times a day. I also have pain in my hands, feet, arms, back and neck and get occassionally get what feels like an electric shock in my limbs. I've yet to experience any noticeable muscle weakness, but am having difficulty walking around because of cramps in my calf and painful tendons.

I'm having a hard time being at work and ignoring the pain. The two neurologists that I've seen dismissed my fasciculations and pain as benign because I'm 29 years old. I'm starting to feel like nobody cares and was hoping that some you may be able to shed some light on what I'm going through.

Did any of you experience the pain, burning, tingling sensations that I'm feeling as an early symptom of ALS (or other disorder that didn't end up being ALS - I realize everyone's experiences/early symptoms are/were different)?

Is there someone I can see/somewhere I can go that will give me a better understanding of what may be wrong? The last neurologist I met with said "it may be ALS, but we won't know until you present with muscle weakness."

I'm scared because every day my symptoms seems get to worse. The fasciculations alternate between my calves, hand (right only), right thigh, back, bicepts, and neck. They were easy enough to ignore, but seem be getting more violent. My left calf feels cramped all day long and I have pain in my legs and hands. Any help/adivce is sincerely appreciated.

[stevef]

You need to go to als clinic if you can get to one. I know how you feel i have had some of the same symptoms and the clinic said right know it looks clean and no sings of als but i am still worried and scared as you are. Keep the faith and pray for the best but my advice is to go to a clinic if they can and have them run test even know there are no confirmed test for als but it might rule out of figure out some other disease. Best of luck and God be with You

Steve

[zac111]

hi baxter sorry you have to be here first odd the needles and pins are not usually a sign of als but mabey a neruophaty of sign kind lets just hope and pray it is. there are all kinds of things that cause muscl twithes so tryu and calm down the best thing you can do is find the closest als clinc to you and call them ive been to 2 different neruos and they told me the same thing so it just might be i had pain with mine to begin with but it went away so call them and may god bless and let us know how things go these are great people on this site.

[Jamiet]

Baxter,

I don't think i can tell you any more than Steve and Zac did, you need to get to an MDA / ALS clinic, they are the experts.

ALS generally doesn't present with numbness / tingling, but anything is possible and it's happened before. Also, i'm 32 and i'm pretty sure Steve and Zac are in our age range. There are no real age limits to most neuro problems and there are exceptions to every rule, which is why this is so frustrating and scary.

Ask any questions you want, we are here for you.


Rgds,

Jamie

[ltr]

To add to what the other members have already told you, I was wondering if you had an MRI of your brain or back. I know you said you have been reading the forum, so you already know that these symptoms can be a lot of different illnesses.....and, like Jamie once said, about 50% of us don't have ANY diagnosis! Without alarming you, your symptoms sound more like MS than als, but still, it could be anything. I am really sorry that you are experiencing these problems and hope you get answers soon. Push your doc's for more tests and some help. Good Luck. Leslie

[CindyM]

Hi Baxter. Interesting screen name. I used to spend my summers near Baxter State Park in Maine so the name raises fond memories. Regarding your symptoms, these things are really hard to DX. It usually involves a period of waiting and testing and them more waiting while they rule out everything else. At some point you start to realize that it might actually be a good thing if they rule in something other than ALS.

Your best bet it to inform yourself enough to feel confident when talkign with the doctors but not enough to get overwhelmed, and then try to focus on your friends and family, as hard as that might be. Good luck and let us know how things work out for you. Cindy

[JACKIEMAX]

the name 'baxter' brings fond memories to me also. i live in a small town in middle tennesse by the name of baxter. we have a wonderful als clinic 90 miles away in nashville, tn. - it is the vanderbilt als clinic.

you won't get too much information or cooperation from regular neurologists for answers i'm afraid. we went through three neuros, an ent, respiratory specialist, primary care md, before we could get a dx. that dx ws from the als clinic.

good luck in finding one. i didn't see the state you live in, but hope there is a clinic close by.

jackiemax

[APC]

Hi Baxter, My husband has had fascicultions since about sept. Drs in Cleveland said possibly benign. Did 2 EMG's neg. He only has them through his shoulders, elbow to elbow. 24/7. No pain. Some problems with speech at times. Coughs while eating. Legs and arms still strong. He finally got the MRI of the brain this past week. This was by my insistence to my family dr. Cleveland wanted us to wait 3 more months. The MRI dx by family dr. as early ALS. So we now have an appt at OSU MD/ALS clinic. We also have a lot of praying goin on. I hipe my husband will use this forum too. It helps to know others that are facing the same stuff. Thanks for listening Alice

[CindyM]

Hi Alice. I sent you a private message but am glad to come to this thread and see you figured out our little system! You are very right that there are anxious times but you are not alone. So I am glad you found us, but sorry for the reason you have to be here. If you use the search feature at the top of this screen you will see many discussions around muscle twitches, weakness, and testing for heavy metals. Let's hope the docs come up with a conditionother than ALS. regards, Cindy

[pfowler44]

Hi Baxter
Most neurologists have little experience with ALS. Does this run in your family. Go to an ALS clinic. We went to Ann Arbor, MI. They were very good. You don't have wait for muscle wasting to get a diagnosis. EMG will usually and a good ALS neurologist will usually tell the story. They do like to do MRIs also. Talk to your primary Dr and get him to refer you to a clinic nearest you. We live 3 hours from Ann Arbor and they just happen to be in our insurance network. It is better to know than to not know what is going on. God Bless you and your family. Good luck and if you ever just need to talk e-mail me a private message. We have just gone through all the testing last week.
Sincerely Pat

[zac111]

hey baxter if your neruo wont refer you call the nearest als clinic i did and they have gotton me in within 2 weeks,and i wish you the best of luck.

[Jamiet]

Rough Time Baxter, We know and have been thru exactly what you are going thru.

Please feel free to ask any questions you want, that's what were here for.

Look up your local ALS Clinic on the MDA Website or the ALSA.org website, and call your local chapter. When you speak to the clinic, tell them your symptoms and you'll get in quickly, there aren't these 3 - 6 month waits at ALS Clinics.

The twitching can cause many things, and the numbness is very unusual for ALS. Have your poblems gotten progressivly worse, or come and go?

Any double vision? Weakness / cramping at the end of the day? This could be Mystenthia Gravis. Also, what about Guillan Barre - have you been tested for that?

Get away from the local neruos, they are of no help and usually suck...to say the least.

Keep in touch here, we can help you all you need. Ask any questions you want.

Rgds,

Jamie

[vmd]

I live in a small town and the nearest ALS clinic is hundreds of miles away. I will wait to see what the local neuro says first and if the diagnosis is ALS or suspected ALS, then I will make the trip. I have read that there is a 10% rate of false positives, but a 44% rate of false negatives. The false negatives are much too high and is a source of great concern to me. What are the local neuros good for, then?

[ltr]

I'll tell you what the local neuro's are good for

1. Blaming it on anxiety

2. Insulting your intelligence

3. Blaming it on anxiety

That's all I can think of right now.

[liz]

vmd -

I think Leslie's list is incomplete. The local neuros are good at sticking you with needles and applying electrical shocks all over your body. They also say "hmmmm" a lot.

Seriously though, a lot of the stress people experience during the diagnostic phase comes from neurologists who aren't certain what they are seeing. They are fine for the routine stuff (for example, carpal tunnel) but flounder when things get too complex. This is why you consistently get the advice to make the trip to the ALS Center. It takes a specialist to diagnose a motor neuron disease. They say "hmmmm" less and offer more answers.

Good luck,

Liz

[vmd]

That doesn't sound good. So does this mean that local neuros are more likely to miss the diagnosis? If so, then do the symptoms become progressively worse to the point that ALS is apparent and one doesn't need a neuro to diagnose the obvious?

This is becoming very difficult because I was hoping that the local neuro could give me some peace of mind, one way or the other.

[ltr]

Liz - I love your addition to the list! How could I ever have forgotten the hmmm's!

VMD - we didn't mean to worry you, it's just that many of us have had neuro's like the above mentioned. That doesn't mean they are all like that. Usually, though, if you want a thorough diagnosis you should just head straight for an ALS clinic. In my opinion, it isn't worth wasting your time. A good neuro would send you there anyway. Good luck. Leslie

[vmd]

Liz and Lesie:

I already have an appointment with the local neuro, so I will keep the appointment, but will ask for a referral to an ALS specialist. The problem is that I will have to travel far to see one. I read that the mean time from first symptoms to diagnosis is about 1 year. This is a long time to have the dagger hanging over your head!

Also, what is the difference between an ALS clinic, a certified center, or a chapter? The closest places for me are the certified centers and chapter (300 miles or so), but the ALS clinic is more than a thousand miles away. I live in North Idaho.

[Jamiet]

VMD.....

LTR is right on!!!!!!!!!!

Local Neuros are horrible. YOu may luck up and get a good one, but, don't even ask for the referral, you don't need it. Call the ALS Clinic yourself and they will accept you once you tell them your symptoms. No distance is too far when your health is concerned!

YOu will offend the local neruo by asking for a referral, trust me. I almost slapped mine (the first of 5), when i asked for the referral and he told me it was a slap in his face......LITERALLY.... he almost got the slap!

go straight to the experts, don't waste time.

Rgds,

Jamie

[Al]

The chapters usually do support, fundraising and local awareness. Not sure about the center and clinic difference as they are American terms. It may explain it on the ALSA site.
AL.

[vmd]

Thanks Al.

Although I have yet to have the electrophysiological studies, I know that I have lost strength on my right arm. I know this because I cannot lift the same amount of weight I have been able to in the past. This change has come on quite quickly (within the last 2 months). In addition, within the last week, I am no longer able to lift the same amount of weight and with as many repetitions with my right wrist. That is, my muscles on the right wrist fatigue quicker than my left and the change has become apparent in the last week. My right bicep is the same size as the left, whereas before the right arm (my dominant arm), was larger. Thus, atrophy. These symptoms certainly appear to be ALS. In trying to find alternative explanations, I have yet to find some.

[CindyM]

Hi VMD- I don't have the same issues with my local neurologists as they are the ones who first suspected ALS and sent me to the clinic. It did take awhile, though, since they treated me for ulner nerve, carpel tunnel, and a pinched nerve in my neck. I still have all these things but now I have lost muscle and weakness to go with it.

The ALS clinic, however, is waiting for muscle loss that cannot be explained by the pinched nerves. That is happening in my legs but very slowly. So what I get out of this is that a clinical DX depends upon observation, since there really aren't any tests for ALS. And observation is a very subjective thing. So any month they don't confirm MND is a good month for me! Cindy

[Jamiet]

Cindy is right, i am biased, based upon the neuros around here. Hopefully you get a good one. They are scarce.

I would still sched the appt. at the ALS clinic / center..same thing. If you don't need it, then all you have to do is cancel it.

Good luck!!!!

[shannonme]

Liz and Lesie:

I already have an appointment with the local neuro, so I will keep the appointment, but will ask for a referral to an ALS specialist. The problem is that I will have to travel far to see one. I read that the mean time from first symptoms to diagnosis is about 1 year. This is a long time to have the dagger hanging over your head!

Also, what is the difference between an ALS clinic, a certified center, or a chapter? The closest places for me are the certified centers and chapter (300 miles or so), but the ALS clinic is more than a thousand miles away. I live in North Idaho.

Hi VMD-

Seattle has two ALS Clinic's to choose from:
Virginia Mason Medical Center
1100 Ninth Avenue
Seattle, Washington 98104
Phone: 206-341-0420
Fax: 206-625-7240
Website: http://www.virginiamason.org

University of Washington Medical Center
1959 NE Pacific
Seattle, Washington 98195-6115
Phone: 206-598-4590
Fax: 206-598-2813
E-mail: seattleservices@mdausa.org
Website: http://www.washington.edu/medical/

Good luck-
Shannon

[CindyM]

Jamie! I never said you were biased! I was just thinking I've been lucky, is all.:) Cindy

[CindyM]

AnnMarie-thanks for the vote of confidence. Al, David, TBear and Carol got us all started on the right track. It feels good to be a part of this effort. Cindy

[vmd]

Shannon:

Thank you for the information regarding the Seattle centers.

One of the major problems with waiting for an accurate diagnosis is the time. One would think that with the Escorial criteria being so specific, that this would not be the case. In my situation, I have noticed a very quickly progressing clinical picture. I suppose this is not good news for me, but the loss of strength within the last 2 months has been alarming.

Since I am new here, I'm assuming there is a registry on the site. I'm curious as to how many of the posters on this site have been formally diagnosed with MND.

[anne]

Hi VMD. My mom was diagnosed with MND June 2006. Her's started with bulbar symptoms. She has full mobility of her limbs. However, I am now starting to wonder if the diagnosis will change to ALS because I have noticed she is having some problems with her neck being stiff and has decreased mobility of her neck. Anne

[vmd]

Anne:

I wish your mother well. I also have experienced neck stiffness going back for more than a year, but I did not start to have the weakness problems until recently. Of course, I may have had such symptoms before but they were not as noticeable as they are today.

[vmd]

Anne:

I wish your mother well. I also have experienced neck stiffness going back for more than a year, but I did not start to have the weakness problems until recently. Of course, I may have had such symptoms before but they were not as noticeable as they are today.

[liz]

vmd -

To complete/edit your user file, click on User CP above then click on Edit Profile. You are currently listed as having been diagnosed with MND because this is the default entry. You can change that with the click of a mouse.

Liz

[vmd]

Thank you. How do I delete the multiple messages I posted above?

[CindyM]

Hi VMD- I deleted them for you. Sometimes the board won't let us post duplicates but if it happens again there is a tab at the right bottom of your post that will let you edit your post or even delete it. Cindy

[vmd]

Thanks for the information.

[John1]

Hi VMD- I deleted them for you. Sometimes the board won't let us post duplicates but if it happens again there is a tab at the right bottom of your post that will let you edit your post or even delete it. Cindy

Hi Cindy,

How were you able to delete someone else's posts or are you a moderator? Also, I find that one only has a short period (several hours?) when one can edit a new post and after that it is inaccessible.

John

[Meg1]

Hi Baxter, My husband has had fascicultions since about sept. Drs in Cleveland said possibly benign. Did 2 EMG's neg. He only has them through his shoulders, elbow to elbow. 24/7. No pain. Some problems with speech at times. Coughs while eating. Legs and arms still strong. He finally got the MRI of the brain this past week. This was by my insistence to my family dr. Cleveland wanted us to wait 3 more months. The MRI dx by family dr. as early ALS. So we now have an appt at OSU MD/ALS clinic. We also have a lot of praying goin on. I hipe my husband will use this forum too. It helps to know others that are facing the same stuff. Thanks for listening Alice

Alice, I think you need to talk with your family doc. One thing I can pretty much guarantee you is that he cannot possibly diagnose ALS from your husband's MRI. In fact, in general, a completely normal MRI is the expected finding in ALS--ALS is a diagnosis of exclusion. If your husband's MRI was normal that wouldn't rule out ALS but I can't imagine any doc with even the slightest clue about what he was doing would "diagnose" early ALS from a normal MRI combined with previous normal EMG's.

It's a fairly new finding that in a minority of ALS patients an MRI will reveal an abnormality in the subcorticospinal tract that is more common in ALS patients but it's not diagnostic and that fact is little known, anyway. AFAIK, no ALS experts use it to diagnose ALS.

You need more information. Although it's conceivable that your husband's MRi revealed such an anomaly and your family doc is right on top of the latest obscure research into MRI findings in ALS, it seems unlikely. Could it be that your doc just wrote "early ALS" in the diagnostic block of some form for insurance purposes?

Keep us posted.

[Al]

Hi John. We did make an announcement a while ago about Cindy becoming a moderator. You may have been in transit from the warmth to the cold and missed it. I moved it back to the top of the General page again. One of the anomalies of our software only lets the poster edit their post for a set period of time. I'm not sure what length or why but you could email David and ask if you like.
AL.

[John1]

Hi Al,

You are exactly right. I was in transit and it is cold. The bays are blocked with pack ice and even a few early icebergs are making their appearance. People rejoiced here today when it reached 7 degrees and we saw a few patches of blue - and no, don't bother telling me about the sun and heat in Ontario.

What a great choice in snaring Cindy for a moderator. We were lucky to have her as a member and now doubly fortunate.

John

[Al]

Well it got to 15 here today but 0 tonight. That's 59F and 32F for you metrically challenged folks. I'm not bragging about the heat yet. Cindy's a great help to us. We could probably use another and we are looking. AL.