odd things I've noticed and other rantings

[myooshka]

Just wondering if these are things people with als have and I've noticed since I got sick one year ago. Besides the atrophy everything pops and snaps when I move, my nails are ridged and have a purpleish tinge in the moons. In my feet and hands where I have the most atrophy the skin on my palms and bottoms of my feet is very thin and more red than normal. If this is not ALS is is something serious I am a normally active 31 year old I don't drive, cook, clean my house, do yardwork because my muscles tire too fast then for sure I have no energy for my three month old son Jacob. It has already been one year since this started and I am pretty much just starting out with regards to getting an answer. I had a really shitty gp just thinks everything was either stress or pregnancy. I lost both my parents and there is a history of biploar in my family which I don't have but on paper it would be easy to explain it away, only now with this horrible atrophy in my hands they can't ignore anymore. The first neuro I saw I told her about the fatigue and the wierd fluttering feeling in my leg she found eight beats of clonus but said it's just cause I'm young and anxious. Sent to neuro #2 finds clonus very brisk reflexes-normal mri and nerve conduction tests tells my with a clean mri there is nothing because it would show up. Third neuro sees in my file parents recently passed away so tells me it's fibromyalgia realted to stress. Neuro#4 Comments on how brisk my reflxes are blames my weakness on depression. This is when I was in hospital after birth of my son. A physiotherapist is sent to see me and tells my my muscle tone is not normal, my hands are atrophied and if I don't get an answer at this hospital than keep searching for one. How can a trained neuro who is supposed to be the best overlook this but a physio can see it. Neuro #5 By this point I have major atrophy in hands, this is the best one I've heard yet. When I showed him my hands and my arms which have no muscle tone he tells me the reason is because of pregnancy hormone. Then he says yes your hands are really flat and small but tells me I just have hands that look like a child's and of course he see's in my file that there is a family history of bipolar so says even though I don't have bi-polar, I seem to be an intelligent girl with a good head on my shoulders he wants to refer my to a psychiatrist who deals with peole who have my problem.AAAAAAAAAhhhhhhh. I can't believe it here I am my life has changed so drastically, I am so scared for my son and my family, my husband has to do pretty much everything around the house and they are telling me it is in my head. I have already started to write letters to my son and my husbands and I have talked about what he would do if i wasn't here anymore. Everone knows there body and when you have never been sick, I didn't even get colds you know when you are in trouble. You feel it in your body, you feel it in your heart. One week after seeing this last neuro my neighbour takes me to her dr. he didn't check anything but took one look at my hands which are curling and referred me to the head of neurology in Calgary. He told my dr's get used to thinking in the box and if something doesn't fit what they are used to seeing they blame it on psychiatric reasons. He said he does not see anxiety, depression, see's a scared young mom. What a relief someone believes me. This is where I've gotten after one year. There was an episode of seinfeld where elaines tries to get ahold of her medical file because one physician says one thing about her and the rest go along with it, this is what happened to me. Started out cause the death of my parents added with the bipolar my mom had. Then when I was sad because I can't do so much anymore and am pregnant then all of it is blamed on depression. You name it I went through two psych tests, one showing completely normal and the second which showed I had situational depression and was scared for my future which is normal for a very sick person. I had never had any mental problems and no physical problems but somehow I got completely railroaded when I needed help. I can't believe it when I think about it, it makes my so angry. Believe my everyone thinks we have such a great medical system in canada I beg to differ. Has anyone else gone through anything like this? Sorry for the rant feels good to get it out. Mya

 

[Jamiet]

Yep, same exact story, almost to the "T".....

i know where you are. I recently took time away from here, as my muscle biopsy report was ESSENTIALLY NORMAL, but i'm a little refreshed, and doctors cannot snap their fingers and make this all go away overnight.

Now, was at an ALS clinic......go look up the medical definition of essentially and tell me how its supposed to be used in the same sentence as normal. It showed rare "atrophic and denervated fibers", one each on a stain.

So, my ALS spec. went so far as going to 110% certainty i don't have it and even told me, whatever i have didn't cause any damamge to the muscle. I guess that answers the question of why we took it from the left bicep, after they examined me and wanted to take muscle from a noticably smaller muscle.

so, you've just got a quick rundown of the last month for me. I've been at it since Aug 2006 i've been at this. I went thru 1 GP, 1 cardio, 1 Gastro, 1 Internist and 5 Neuros and 1 psych and still really no answers, except a positive ELISA lyme test with the followup test being negative (western blots)....so, now i'm off in trial land (let's try this or that) with antibiotics and shots of all kinda stuff. it's making me feel alot worse than before.

So, good luck and hang in there. If i can give you one recommendation, stay close to the guy that was nice and recognized the problem, he will help. Make him send you to the top ALS clinic in your area, i'm sure AL and them know the one.

rgds,

jamie

 

[myooshka]

yes, well this new family physician is a god sent. I am almost sure my illness whatever it maybe was caused by a virus. I had a really odd start to my illness after being out doing yard work for two weeks straight, hands swelling, 17poud weightloss in two weeks,burning so bad in my skin it bothered me to have a bra stap on, all my joints got sore it was like a truck hit me. I am not seeing an als specialist per say but this guy is the head of neurology in Calgary so I am assuming this guy will know something. It's pretty hard for them to tell me nothings wrong now that my fingers are curling and going off every which way.

 

[vmd]

The problem with correctly identifying an atrophy process is that it is difficult to differentiate in a person who has a small or thin hand naturally. One would think that atrophy and weakness would go hand in hand. If there is extreme atrophy, then there should be profound weakness. Do you have weakness in the hand or only muscle fatigue in the hand?

 

[brooksea]

Mya,

I suggest this because of the swelling you mentioned and the nail problem along with the curling of the fingers. Have you seen a Rheumatolgist? This sounds sorta like Rheumatoid Arthritis.

Jusst a suggestion.

 

[myooshka]

Yes saw a reumatologist. my Dr says is definately a nerve thing my hands have gone completely flat, there is a guy who has with als who's hands he has pictures posted on here, he has the curling fingers and the flat palms. I now am getting food stuck when I swallow and my tongue has indentaions on the sides and bald spots all over it. I am finding it hard to sqeeze a bottle of ketchup and can't hold a fork properly. Unfortunately arthritis was ruled out

 

[myooshka]

Would it be very rare for a 31 to have diagnosed of ALS? All I know is I have the atrophy,weakness popping clicking joints, spasms,clonus, brisk reflexes so I just wait for my appointment. I think sometimes we get too caught up on getting a diagnosis. Me, I know I'm sick, my life has changed so much since this started, but I think we have to remind ourselves that diagnosed or undiagnosed we still have to live. I understand we need support but I know myself by sometimes focusing too much on the illness takes away from the good days that I have.

 

[Jamiet]

WE are very similar in issues. I'm a medical mystery. So say, the ALS expert says with 110% certainty i don't have it, mybiopsy had "rare" atrophic and denervated fibers...

I have the tongue issues, now it's crooked and the center line is really crooked. my right food and calf area are much much smaller than the other. My left arm and shoulder is much smaller than opposite and my entire left side of face, neck and jaw are significantly smaller than right, even my smile is crooked. I don't know how they don't see it.

All my joints, feet, back, shoulders, hands, knees crack horribly and all day and all the time, really loudly. I mean, i sound like rice crispy treats walking around...snap, crackle, pop, snap crackle, pop, snap, crackle, pop........

I have very very diffusely brisk reflexes, so much i kicked the doctor. I have jaw clonus, i have thin hands, feet are skin and bones, my shoe's don't fit, i've lost almost 2 shoe sizes? Go figure.

I'm 32 and yes, ALS is hitting younger people. I would say, the average age on here is 40 max.

hang in there, go to a specalist and good luck

rgds,

jamie

 

[patricia1]

what is clonus ? never heard that Pat

 

[pmbenb83]

Clonus definition

Hi Pat,
I use this website for my work (medical transcriptionist) quite often. There may be more definitions on the internet that may explain it better. Pam B.

Web definitions for Clonus
A sign of spasticity in which involuntary shaking or jerking of the leg occurs when the toe is placed on the floor with the knee slightly bent. The shaking is caused by repeated, rhythmic, reflex muscle contractions.

 

[myooshka]

As I mentioned I have this clonus too. Is this something that occurs with als?

 

[paula B]

jamie

When they check my reflexes nothing moves,,so Jamie i would say brisk is good.

PaulaB

 

[mamaoftwo]

Paula - I dont understand that. Reflexes are classically brisk with ALS. Have you been diagnosed? If not, diminished reflexes. I believe (and please someone correct me if I am wrong) points to a myopathy or neuropathy. Did they look at MMN or CIDP for you?
Mya, you asked if mine are brisk. Yes they are but the report says "brisk but symetrical". My neuro stands well to the side when he does mine now !

 

[paula B]

Yes i have diagnosed of als,,diagnosed was april 06

PaulaB

 

[paula B]

Well alrighty then.
PaulaB