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FootballNick

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Hi Everyone,

I applaud you all for fighting on and also for the compassion you share on this forum. I've been reading for a while and thought it was time to post before I lose my mind completely.

I'm 43 (M) and a father of 1 son, with another (son) on the way this May. Live in NJ. Admittedly...I'm far too overweight...but have always been extremely strong and healthy even with the excess.

Starting last September (07) I began feeling cramps in my hands and wrists (similar to a writer's type cramp more progressed in my left hand) when working around the house, at the computer too much or during recreational activities. I also noticed that my left Pinky finger was not quite right...it was bent upward which has made typing slightly more difficult - although not a major inconvenience. I don't remember injuring this finger. The stiffness and dull pain became more pronounced while on vacation in October. I visited a PCP and Neurologist in November - had bloodwork, general reflexes and balance tests, a Brain MRI and an NCV/EMG on my left hand/arm. All came back within normal...except the bloodwork did show my Vitamin B12 was in the low range (250) - more on this later.

After the tests - I began getting random Fasiculations in early December - mainly in my upper arms, stomach and upper legs. Also my left arm and hand began to weaken.....very slightly. It would just get tired quickly from doing things such as writing, washing dishes or holding a phone. After another visit to the Neuro...in which he spent about 5 minutes with me - he told me I had BFS and Anxiety....and prescribed me Xanex and other longer term depression medication. I was unhappy with this prognosis - mainly because he didn't seem to care to believe me in any way..nor spend any time on the visit.

I sought out another Neuro...and got extremely lucky to find one who has been both thorough and diligent with following up on my tests. Had another EMG where he found slight nerve irritation in my left hand. I'm not sure of the clinical terminology...but it was like a slight low hum on the EMG. He immediately checked my Neck and ordered a Neck MRI as well as more specified bloodwork to try and isolate Lyme and Rhumatoid factor among other things. He also ordered a sleep study. He seemed to rule out BFS by tapping on my hands near my thumbs a certain way to try and induce Fasics (unsuccessfully).

Sorry about the long windedness. I wanted to write today because I am scared as hell.....interestingly I'm not scared for me, but more for my wife and kids and the situation / scenarios that might ensue. My left arm has become noticably weaker in the tricep area. My fasics have become more frequent and now appear in my hands, calves and feet as well. They seem to be random. I'm much more fatigued and tired and need to sleep much earlier....which has caused much stress in my family...especially with a 6month pregnant wife. I've also had much more mucus in my throat for the past 3 weeks and constantly have to cough to clear it. My voice is now hoarse and softer when I speak. My calves experience a crampy feeling at night and if I sit too long or sleep without much movement, my muscles become extremely stiff. Admittedly, some of this may be related to increased anxiety and lack of sleep.

The final straw was that this morning I woke up and my right hand between my thumb and index was twitching on and off for about 2 hours. The fasics were fairly rough as they caused my thumb and finger to twitch noticably as well. It's hours later and the hand still twitches a bit.


Besides being scared I also wanted to write to give some people who come here looking for answers some possible other options to consider. These came from consulting with my doctor who is looking at these possibilities as well as a NMD. I'm currently undiagnosed....but there are still several possibilities to think about:


Sleep Apnea or other Sleep disorders - which might limit the amount of oxygen intake or melatonin may cause muscle fatigue and weakeness as well as other neurological symptoms such as Fasiculations.

Vitamin B12 Deficiency - also may cause neurological symptoms.

Celiac Disease - (related to the inability to absorb Gluten) may show certain neurological symptoms which can mimic a NMD in sever forms. I even read a case study where a patient diagnosed with ALS actually had Celiac....he had progressed to the point of muscle atrophy in his leg / hands. After a strict Gluten free diet for 9 months...some (not all) of his muscle function returned.

I will try to keep the forum updated on my status. I have a follow-up next week with the Neuro to go over the latest results.
 

Peg B

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Hi,

Welcome, but I am sorry you have to be here. Hopefully you will have something else. Another disease is Multiforcal Motor Neuropathy. MMN.

For the night cramps you may find Tonic water with quinine helps. For me it takes the cramps away completely if I drink about 3/4 litre a day. It's the same stuff that goes with a "gin and tonic," but without the gin. It is in the pop or water isle at your grocer. Take care and best wishes, Peg
 

Al

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Hi Nick. Sorry about your problems and hope you find answers soon. Most of us in this boat either diagnosed or not, feel bad for our families not so much for ourselves especially those with young families. It's only natural. Try to not let the worry consume you. What will come will come. Things may not turn out as bad as you think. Stay positive and ask questions and use the search option to be better informed.
AL.
 

FootballNick

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Thanks for your kind words guys. I had read about the Tonic / Quinine...so I'll give it a try if the cramps bother me. Also will look into MMN as well - I'd never heard of that. The good news today is that the Fasics in my right hand from yesterday have disappeared so I can actually get some work done on the computer...although they continue to pop up elsewhere randomly throughout the day. Seem to be constant and present in my left hamstring today. These things are like a constant cat and mouse game...in fact I was actually laughing to myself during the last EMG. When the doc was performing the NCV portion of the test....my left hand was twitching below my ring finger. I tried to point this out...but the twitches immediately disappeared and didn't reshow during the EMG stick tests.

As far as the stress/anxiety....I've been both blessed and cursed with a great sense of perception. Unfortunately in this case it is a burden...since I notice every little twitch going on with my body these days. I try to stay as positive as I can....as you probably know all too well....the frustration of no diagnosis also weighs heavily.
 

FootballNick

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Update

Here's an update after my last Neuro Visit (and perhaps a plea for some insight/advice!):

Had a consult with the Neuro and he felt that ALS wasn't very likely - mainly based on the fact that I've had 2 clean NCV/EMG tests. He also indicated that with ALS my fasics would likely be more prominent. With lack of a diagnosis - he is treating me for sleep apnea (I was tested for it recently and Dx with mild / moderate apnea) to see if the nerves are irritated due to lack of O2 during REM sleep. He also requested an initial blood screen for Celiac disease. My wife was relieved, however I have to admit that I remain skeptical. My left arm and hand continue to weaken (probably at about 50% strength), I still have random fasics from my neck down to my calves and regular fasics as well as tingling have appeared and become very prominent in my left foot over the past week. They are constant throughout day and night and with inactivity the foot is now stiffening noticably. I've also not been able to get rid of the excess amount of phlem in my throat

I'm scheduled to return to the neuro in 6-8 weeks for another consult to see how the Apnea treatment is working.

Not sure what to do next. It is hard to imagine that even moderate apnea is causing all of this since I've most likely had the apnea for years. I could ride out the 8 weeks and see how I'm doing - but the weakness in my left arm seems to be gaining on a weekly basis and I'm afraid it will render me useless to perform functions with that arm in the near future.
 

DMHltd

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I'm sorry about your symptoms. I know how you feel because a lot of them are dead on with mine. The thumb/finger fasics, widespread fascics, left arm gets tired with minor use. I too worry about the weakness progressing too quickly. I'm older than you so it's grandchildren and older children that I'm worried about. I'm overweight as well. I also notice every little twitch, ache, and pain, I've always been that way and always thought the worst too. I'm not diagnosed either, my neuro didn't want to order a NCV/EMG because of the good physical exam. I think I just went in too soon. I know it's going to be tough to wait for the next visit but at least you found a neuro that cares enough to give you the right tests without major outward signs. I'm sorry if this post seems all about me but I'm trying to make two points. 1) You are not alone in what you are experiencing. 2) I've found that the more I'm able to ignore the fascics and weakness the less stressed I become and the less the symptoms. The inverse is also true. I've even felt a bit stronger in my arm during these times. Whatever we have is tricky though, it'll make you think it has gone away only to dash your hopes by returning. Anyway I've pretty much been told by the forum members to chill out so that's what I'm trying to do. Good luck and keep us posted.

Dave
 

wright

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Hello FootballNick

I can understand why your symptoms are alarming to you . . . BUT . . . for you to have symptoms in your left hand / arm . . . and then shortly after that . . . in your right hand . . . as well as the symptoms in your legs . . . all at the same time . . . in such a short period of time . . . is not at all how ALS works. Your entire central nervous system isn't going to "short-circuit" like that all at once. I'm sure that's why your neurologist is insistant that it isn't ALS . . . because most likely . . . it isn't. The sleep apnea could certainly contribute to your symptoms but probably isn't the sole cause. Your lack of sleep and anxiety is certainly not helping . . . and the anti-anxiety medications you are taking can contribute also. Did you have any indication prior to Sept that anything was wrong? ALS is an insidious disease that sneaks-up on you . . . that starts slowly . . . over time. Hang in there and trust your neuro. Take care.
 

DonnaJ

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Hi,

If you don't get the answers you need. You might ask your primary doctor to refer you to Cleveland Clinic with Dr. Pioro. He specializes and is also World Renowned for his work in ALS. He did a very thorough check up on my husband and a full body EMG. We took two trips up there, but we finally got an answer. He also put my husband on 1000 Vit C, 1200 Vit E, 150 Co-Enzyme Q10, and Creatine (powder). He also takes Rilutek 2 times a day, baclofen (cramps and fasci), zanaflex (crampsand fasci) and Quinine (cramps and fasci) 2 times a day. If he didn't take the bac, zana, and quinine he would be rolled up in a ball all the time.

Good Luck, God keep you in his loving arms.
Donna - WV
 

FootballNick

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Hi All,

I’ll apologize in advance for repeating some things here….it seems to make me feel a bit better to get things off my chest.

Thanks for your replies and kind words. I guess I'm anxious over the whole situation and that is definately exaserbating things. I don't want to create a misunderstanding as I'm definately still very functional from a physcal perspective. The weakness in my left hand/arm/shoulder is definately progressing. It became noticable in my hand in September 07...migrated to my arm in mid December and has progressed to my shoulder in Feb 08. I can only estimate how much strength I've lost since all are still very functional and not that limiting....however the muscle stamina is just not there anymore. For instance, in the course of normal activities I can pick up a dish to wash easily....but just not hold it for too long. My right side seems to have fared much better so far. While I noticed fatigue in my Right hands as well in September....it remains basically unchanged.

What seems to worry me the most right now are the Fasics and my persistent throat phlegm/coughing. The fasics first were noticable in December.....however they've progressed dramatically in the past 2 months. They were very random and infrequent in the beginning....and now seem to have much more of a pattern and frequency. Note that they seem to be most prominent when I'm idle or at rest...however the twitches in my left foot have persisted constantly for 3 weeks and sometimes it feels like fireworks are going off. This has adversely affected my sleep. I'm not sure what a mess I'll be with 2 months of this before seeing the Doctor again.

I've heard great things about the Cleveland Clinic and have visited their Website at MedHelp. I'm in NJ so I may also check out local options in NY/NJ area. As far as the Anxiety medication....I chose not to take the Lexipro since I did not feel the 5 minute psyche diagnosis was valid. I do however take an occasional prescribed Xanex if I'm having a particularly bad time of it.
 

crystalkk

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Nick,

There is an ALS clinic in Philadelphia at Pennsylvanis Hosp. Dr Leo McCluskey is the Director and he sees new patients on Wednesdays most people get a new patient appointment fairly quickly. And we also have an ALS clinic at drexel, Dr. Terry Heimann-Patterson is the director. When I called in June she was not taking any new patients, she wanted you to see one of her associates first, and be referrred by them.
 

FootballNick

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Hi Crystal and everyone,

I've waited several weeks just to cool off a bit. My psyche seems to be a bit better with less focus on my symptoms. Vitamin B suppliments seem to have given me a bit more energy and sometimes it seems less fasics as well (acknowledge here that this may be my imagination). There are some things that linger irregardless (constant fasics in my left foot, weakness in my left arm etc)

:confused:
Has anyone here experienced their finger tips extending upwards? It seems that my left hand pinky and ring fingers have begun to noticably curl upwards when I try to straighten or point them outward.


I may soon take you up on the Philly clinic based on my next Neuro Appt and apnea treatment.
 

juliesmile

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Nutritional neuropathies?

My husband is in the process of all that you talk about. I'll run down his symptoms quickly. Began with limp then atrophy of the left leg below calf,( he wears a brace for foot drop), he has random twitching throughout his body. They don't keep him awake, nor does he even complain about them. (denial?) Has had EMG/NVC on both legs, twice on left with worsening after 3months. Did arms for a base line and it came back abnormal, but inconclusive. His strength and stamina are worsening all over. He too is extremely tired by the end of the day. Barely makes it past 9. Has a very limited diet due to a problem he has choking. (not AlS related, he's had it over 30 years), but he eats soft foods, no meat, he does try and eat plenty of tofu and legumes to compensate for the protien thing, but I just can't help but think his diet has to be having an effect on him. He snores and it seems to me he could have some sort of sleep/oxygen problems. Can these symptoms seriously be caused by a nutritional deficitor a sleep disorder? That would be good news.

I asked the neurologist if it could be nutritionally based and he said he would have been affected my systematically. Not just on one side. Hoping he's misinformed.

Thanks
Julie
 

CindyM

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Can these symptoms be caused by a sleep disorder?"
In my own personal experience, the sleep disorder does not cause the symptoms but if I take care of the sleep thing then my symptoms are much easier to deal with. And if I don't use the cpap all night every night I get physically weaker.
 

wright

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Hello again Nick

Have you had any type of pain in all of this . . . in particular . . . neuropathic pain (burning, tingling, numbness, wrenching pain)? The reason I ask is that it could be some type of peripheral neuropathy. The EMG might have been done too early to catch it. If you haven't had neuropathic pain, have you had any type of pain at all? Question about your weakness: is it worse in the morning or as the day progresses? You said that your foot gives you more problems if you don't move it much . . . is that still the case? That seems counter-intuitive for ALS.
I hope you're doing better. Hang in there.
 

Christina

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Bulbar Symptoms

Hi there I am a new member and have been reading some of the posts. About a year ago I noticed after 1 glass of wine in the evening I would be slurring my speech my husband laughed and said so do most people. A few months later I noticed my speech slurring during the day. I made an appointment to see a neurology consultant. I had an mri scan which was clear. I have been back to the consultant who has now referred me to a speech and language therapist. He mentioned Bulbar and dysarthria. I been looking into this on the internet (it is quite scary the things you read) and all symptoms point to ALS, Progressive Bulbar etc. I noticed I am not swallowing properly and things go down the wrong way causing me to cough. I have noticed a lot of mucus in my throat lately.

I am very worried and feel I won't be around for my 18 year old daughter also my poor husband, I keep bursting into tears everytime I read something about ALS.

Christina.
 
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