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not_ready_to_die

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I am new. I have been sick since nov 2006. I'm ready to give up. They think it is psycosomatic or in my head. Here is what I have got so far. Started with sudden onset of weakness and uncontrolled movements. From 2006 to now I graduated to a walker. I'm 39 years old. Tests. Hyper-reflexive reflexes, ankle clonus, weak and horse voice, extreme upper and lower limb weakness, my wife opens my jars, difficulty speaking, easy short of breath, uncontrolled limb jerks, fasiculations, spasms, bad cramps including my diaphram area, hammer toes on left foot, Babinski on left foot, no abdominal reflexes on left abdomen, chronic constipation, ANA 1:40 speckeled also one 1:40 homogenious, CPK in the 300-500s, occasional low calcium, occasioal anemia slight, leukopenic with increase lukocytes and monocytes, CSF 3.2 myelin with a reference range of 0.0 to1.0, no ogolyconal bands, some kind of banding found in both serum and CSF, Negative brain MRI for lesions, same with spinal cord, blood brain barrier of 9. Slight comprimise. chronic pain in muscles. I can sometimes get a knee jerk from a upper limb reflex. I have been a nurse for some time and when a patient said I'm going to die it scared the crap out of me. This is how I feel I'm certain of it. Any and all help will be greatly appreciated. I refuse to let the VA kill me.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
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2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
It Is Not In Your Head.

from reading your pathological symptoms it could not possibly be in your head,it is impossible to control certain brain functions.
early on in my illness when my first mri and tests came back normal i too was made to believe it was all in my head. at one point i thought "maybe it is",so i ditched the meds and tried to do everything i used to.............only to rush for the baclofen crippled from the spasms and be bedridden for a while.
i have most of your symptoms including focal reflex clonus in my right lower leg.
clonus/myoclonus is pathological you can not control it psycologically.
i have hypotonia/loss of contraction in my left lower leg,limb girdle muscle weakness also.i tried to reason if it was in my head,but others could see it was not.
my neuro finally diagnosed mnd after tests and serial mri's were normal,but no definate diagnosed of pls/als due to my slow progression and only slight lmn involvement.
when they dont know what is wrong they lable you with "all in the head" or "its something they dont have a name for".
SCREAM,SHOUT as loud as you can till someone listens,find a half decent neuro and make him listen.
since getting ill i have found you have to fight for everything,at least here in the uk.
please dont give up,i too thought of this. don't give them the satisfaction,make them stand up and take notice.
there is a careing doctor just waiting out there to listen and believe you.
my neuro has always believed something was wrong,just 2 other doctors who dougbted,but i tell myself they are idiots.
i really feel your pain so much having gone through this myself,you need a good neuro who will listen. have you been to mayo clinic? i think they could help to find what is wrong.
take good care.
caroline:)
 

BethU

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Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
Hang in there! I don't have anywhere near the hassles and paperwork you are facing, but what I've got is driving me crazy, so I can only imagine what you're going through. Somehow, we've all got to figure out how to fight the system as well as the disease ... and frankly, it's hard to tell which is worse!

Keep fighting.
BethU
 

awieleba

Very helpful member
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Apr 28, 2008
Messages
1,023
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michigan
It is not in your head. You have every right to be upset and frustrated. It is bad enough to be sick but then to have to deal with that crap!
like you have nothing better to do than think up illness, and then make your body respond in ways that it never could unless there is somthing wrong?
can you see a new doctor?/neuro
I feel for you! I have a little of everything that you have but I can still get around and open things.

keep calling and demanding, maybe a referral. The squeeky wheel gets the oil!
 

MtPockets

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Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
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US
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Ms
Hey Not Ready, welcome to the forum. We understand as you can tell from the comments already. We have been there done that.
I had one Doctor tell me if the India fakers could lay on a bed of nails all day with the control of their minds, then I should do the same. Just tell myself that I was not hurting and I would not hurt. This from a Neurologist. He must have gotten his degree from on line.
Hang in there and fight this. You said the VA, I would contact the ALS Society or MDA, ALS Division and see about scheduling a visit at one of their clinics. Go to http://www.alsa.org/ or to http://www.als-mda.org/ as a starting place.
Keep fighting. Never give up.
 

not_ready_to_die

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oligoconal bands

Since I have a high CSF myelin level do you have oligoconal bands with ALS. I'm also going in for a EMG/NCS will anything show up with ALS. Right now they are trying to rule out ALS, but I do not think I will last long enough to get through all this. I want to know what I'm fighting so I can start a treatment before it is to late. Thanks Ray
 

planningguy

Senior member
Joined
Jun 5, 2008
Messages
556
Country
US
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Wyoming
I'm sorry that you are having such a difficult time. As a former brat, with family currently on active duty, I have seen how slow the wheels can turn and the frustration patients can experience working their way through the DOD medical system.

If you doctors and care team are not listening, have you spoken with the relevant supervisor? If they've been unresponsive, you should get in touch with your facility's Patient Advocate, if you haven't already. I am just in awe that with the clinical findings that you've listed, you're getting the "psychosomatic" response.

Best of luck,

Robert
 

CindyM

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Joined
Sep 17, 2006
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Learn about ALS
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New England
I am not surprised at the "psychosomatic" response. It is a way to avoid taking responsibility (read: paying for the cost of treatment.) Cindy
 

elliekusa

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May 8, 2008
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I just went to the VA today with a bit of "assertiveness".

I explained in a very assertive and CALM manner that I can't go on day by day getting weaker with NO diagnosis. I had a diagnosis of hemiplegic migraine, but obviously, that is NOT causing the LNM and UMN symptoms.

FINALLY, after three and 1/2 hours of testing and talking....I think I have their attention.
They finally could see the fasiculations in my abdomen and other places after turning off the overhead light and using a lamp. The hardest thing for me is to stay calm and not get emotional. I was in denial on previous visits and did not ask all the questions on my list. Well, today I asked ALL of the questions...thanks to all the feedback I received from this forum.

I am not so sure I like all the answers, but I think I finally have them going in the right direction on my behalf. They are trying to rule out LOTS of things now with ALS being one of the options. I have MANY upper motor neuron and lower motor neuron signs....they can't ignore the facts!

NOt ready to die...you must find someone or some way to advocate for you. It is so hard...believe me. I also have PTSD from the Gulf War...so I think they just assumed it was all...."in my head". If you are not happy with your current doctor, ask for a second opinion. I have found that being nice but assertive seems to work best. You might have to just write everything down and read from your notes, but don't let the Dr's walk out of that room without the info you need!

I am now scheduled for MANY more tests with a possible diagnosis of ALS, MELAS (?), Episodic Ataxia and a few other weird things.

The people on this forum will help a LOT! Hang in there and do not give up!

Ellie
 

not_ready_to_die

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Jul 22, 2008
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Learn about ALS
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Arkansas
Thank you for the responses. It means a lot. I will run my disease, not my disease running me. Whatever the disease turns out to be. Thank you Ray
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
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State
Ms
Write everything down the Doctors say

If you take a notebook with you on every visit to the Doctor and add the date and time, and let the Doctor see that you or a caregiver is writing down what ever they say, it might instill the serious nature of what they are doing. My son is a doctor and I know it would cause his "Law Suit" alarm to go off, and he would pay more attention to what was going on with THAT patient.
It is sad but sometimes we need to play the game to get the desired results. It would be great if they just did their jobs like they are suppose to do, but give them a little kick in the right direction.
Plus, I have had Doctors later tell me, "I never told you that". It does not hurt to document everything for you and your family. Just maybe it will help. I hope.:-?
 

elliekusa

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May 8, 2008
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Keep us informed on how you are doing.

Ray, Please keep us informed on how you are doing. If you need any advice/ideas on how to deal with the VA - please let me know. In my experience, the majority of the doctors and medical people at the VA are really good, quality professionals who are simply overwhelmed with patients and the bureaucracy.

Capt al had some good ideas. However, I can't write fast enough .....my fingers won't work so great....so a tape recorder is a GOOD IDEA! Wow....I think I will start doing that myself. I can never remember everything that was said..especially after 3 hours and doctors coming in and out!

The VA is use to very angry people, so like I said.....kindness BUT PERSISTENCE seems to work in MOST cases. The important thing is to find people who will be on your side and will work for you.

Another thing I found is that it is best to request an EARLY morning appointment in neuro (the first possible appointment). The doctor's have more time and they won't be rushing to get you out because the clinic time is almost over. My last appointment was schedule for 8:30. I arrived at 7:45 and was taken into the clinic at 8:00. I did not leave until nearly 11:30 AM !

Hang in there and do not give up!

Ellie
 

jskierz

Active member
Joined
May 18, 2008
Messages
34
Reason
Learn about ALS
Diagnosis
04/2008
Country
CA
State
Alberta
I have gotten a small tape recorder that I plug into my laptop like a usb and it transcribes the conversation and only a little bit of editing is needed. Other times I take my laptop with me to record information and yes it does make them sit up and take notice that you are paying attention to and taking down everything they say. That is what works for me the best and causes less stress not having to rely on my memory.:)
 
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