posted
SO i went in, he listend to my history, checked me over. watched me walk, run, tested reflexs. Said that my muscle on my neck was noticably different sized on my left side.
Said most people are asymetrical and thats nothing to wrry about. Told him about left side swallowing problems, left sided weakness problems, the fascilations i have been experiencing.
He gave me prozac and told me this was in my head. I showed him my wrinkled tongue and he said that sorry its within normal limits so it must be in my head or that if its anything its the beginning stage to fibromyalgia.
I told him i did not have pain in my muscles except for today because i tried to swing a bat and play softball two days agao and they are soar. He then said well i think you have an adrenelan problem.
Sometimes your adrenalan will be triggered for now reason which causes your symptoms. Lets just say the only thing he did was give me prozac told me i needed exercise and sent me on my way.
This was the worst trip to the docs i have had so far but seeing my girlfriend was in the room with me i had to pretend that i learned something new. He did not try and help me any further and i dont think they are going to try and help me ever.
Thank god I have one avenue still open which is Lyme Doc. Neuro even stated no way does Lyme cause these symptoms and also stated that a central nervous system infection would have showed up by now (I think he meant menangitus).
My forarms are very tight today, told me flat out that I dont have ALS and that stiffness and muscle cramping is not part of ALS. Anyway i am trying so hard to get the facts straight. I learn on the web what the symptoms of a certain disease is along with a neurologist telling me in person that certain symptoms are and the other neuro saying that stiffness and cramping is not part of ALS.
I am trying ti rule out this aweful disease and they dont seem to want to help me do that. I am twithcing all over today again, doctor claimed its normal. He also said even if you have ALS what would it matter there is nothing we can do.
Well i would quit my job and live my life thats what i would do, I took my health for granite so badley before and now i would give everything to just be well again. I dont even know what well feels like anymore. Life is at a standstill for me.
Frozen in time like an iceman, waiting to be thawed when someone actually has answers for me. Lyme is my only diagnosis right now, that and the rest is in my head (so the ducks say).
Posts: 167 | From Los Angeles | Registered: Jan 2006
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posted
I am sorry you had this experience. I had one also like this- They said it was all in my head. 6 months later I found a LLMD and was positive on the WB and tested positive for co-infections myco, bart, erhlichia. Full nuero lyme too. It makes you wonder how they made it through med school. I wish I could get paid what they make without knowing anything.
Posts: 582 | From milwaukee wi | Registered: May 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hello Luke,
That is soooooooo awful! send him to the gator pit!
You'll have to give those poor hungry gators some antiacid. Cuz this on is nasty!!!!!!
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Luke,
Im very sorry this duck treated you so poorly. BUT im not suprised.
I had something similar, the neuro ordered a WB but failed to notice the IGM was missing....stupid duck!!! He then blamed everything on my herinated disc in my neck. So, i saw a neurosurgeon who shook his head and said,
With your symptoms why was an MRI of the neck even ordered. My diagnosis for months was ocular migraines caused by my neck. What a joke.
My PCP duck gave me an anti anxiety drug for my GERD and sensitivity to light... he thought i was nutz.
4 months later I found my LLMD... during the first visit he told me i had typical lyme neck ( i didnt even mention i had a neck problem)
hang in ther luke.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
He sounds just like my neurologist. They obviously all went to the same school.
When I was obviously symptomatic with Lyme but didn't know what it was, he blamed it on possible MS, then my autoimmune disease (which had never caused these symptoms), then finally said all he could do was send me to a pain clinic.
Even after I figured out I had Lyme and suggested it, he said he knew nothing about Lyme.
Now that I'm diagnosed by an LLMD for Lyme and coinfections, this neurologist is covering his rear by saying I was on a cholesterol medication at the time that caused all the confusion in symptoms.
Years ago when I had chronic fatigue syndrome, I was told I was an emotional woman, it was all in my head and to quit my job. I asked the doctor if he was willing to pay my mortgage so that I could stop working. He thought I was nuts.
So many of us have been through this. As others have said, look to your LLMD as the only doctor who will probably believe you and work with you.
I twitch and tremor all the time, too, and have muscle jerks, so don't automatically assume you have ALS.
Have you seen the article on ILADS about the doctor who was diagnosed with ALS and it turns out he had Lyme and got much better on antibiotics?
Hang in there, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Luke, Wow...that sounds familiar. Hearing your story makes me wonder why I ever consider going to the neuro again. I do think about it from time to time since I am not getting better.
I am sorry to hear that he treated you that way...unfortunately it is par for the course.
First of all, I do think they have ruled out ALS for you. Let's face it...most competent neuros can spot ALS for the most part so if they do not think you have it, then you probably don't. If you have had these symptoms for at least six months, they would be able to tell by now.
Secondly, I think you should live your life to the fullest. You do not need to quit your job to live your life every second as if it is your last. People who do not have ALS will unfortunately perish in accidents and from other ailments...start now and live in the moment!
There is nothing stopping you from doing that now. Posts: 331 | From virginia | Registered: Nov 2005
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posted
Luke, I am so sorry you had such an awful doctor. I can totally relate, I went to a neuro at the age of 18 when I couldn't see out of my left eye, had left-side facial numbness, and left-side weakness.
He told me it was migraine syndrome. I didn't believe him at the time, and was very frustrated too. Now I finally have a lyme diagnosis, and know that he just didn't know what he was talking about.
All this to say, I think many people have unfortunately had similar experiences. Hang in there, there are doctors out there who believe you and can help you.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I met one of these (Neuro specialists) in the past. He wanted to see me every year, do some test so he could made appropriate records of my dying. He didn't have a clue what I had.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
I guess not knowing or not having a doctor i feel is compitent telling me I dont have ALS due to my symptoms. A doctor who has it set in their mind that its all in your head are truely not looking for anything, their minds are already made up.
I need open minds not an ego that demostrates ignorance.
I just want to rule it in/out seeing its in my family. I dont think thats asking for much.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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posted
from receiving the same, similar treatment,no matter what the "evidence-based" medical facts , i, as well as too many of us,can say this was vicious, and deliberately so. a form of mental sadism.
Posts: 2708 | Registered: Feb 2005
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Luke...maybe others in your family have/had LYME, not ALS. Just a thought.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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WildCondor
Unregistered
posted
Sorry for your bad experience! You should sue that doctor, you really should. I would never have been able to sit there and listen to that BS. I would have tore the Rx to shreds and had to leave before I would lay into him.
Try not to let that get to you, this was a typical "duck" useless doctor who should be shot during a duck hunt, in a manner of speaking...quack, quack! Move on! Stay strong! Sue his sorry a$$.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Luke,
So sorry to hear you had to go through this. Unfortunately, I think most of us have been there.
I actually had a psychiatrist tell me, while I was looking for a dx and my PCP was continually calling it all anxiety, "Stay away from too many doctors."
Truer words were never spoken, He knew from the beginning I didn't have mental health problems, that I was physically ill.
In fact, he did his best to treat my symptoms until I could get into a real doc, rather than the ducks I had already seen.
It took a few more months to find a doctor who agreed with him and had the guts to write it on paper and treat it.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Being a jerk must be a requirement to be a neurologist.
I had a referral to one because my MRI showed lesions mimicking MS plaques and he told me it was "normal". (I had the MRI because I suddenly started having migraine headaches at 49 years of age).
He basically said I was a hypochondriac and put on his recommendations to "rule out psychoneurosis".
He told me quite emphatically that there was nothing neurological that could be causing all my symptoms. Apparently he had never heard of neuroborreliosis.
Finally got my Lyme diagnosis last year and thank God for my LLMD!
Posts: 105 | From CA | Registered: Apr 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Doctors try to fit you in a diagnosis box, if you don't fit, they tell you it's in your head. Don't sweat it. I agree that if the doctor was at all competent he would be able to spot ALS.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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Sorry you had to go through that. For the record when a doc gives you more than one diagnosis in a minute run from his office confident that he should be on the prozac...It also means that he has not a CLUE and is just guessing.
I think Lymetoo has the right Dx for your Duck
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Your doc and my doc and Jill's doc all musta gone to the same school. Or maybe they are the same doc! Turned out the doc who gave me a steroid shot was the VERY SAME doc that gave Timaca a steroid shot. He had moved to MY state after living in hers to wreak havoc on unsuspecting lymies everywhere!
But seriously: it is so painful to read your post. I am almost in tears over it. I can even SMELL the docs office I have been in your shoes so many times before. Neuros, PTs, physiotherapists or whatever the heck they are, rhuemies, thoracic surgeons, more nueros, GYNs, gastros, I mean the whole lot of em. They ALWAYS tell me it is in my head...no MATTER WHAT I present.
ANd some of the things turned out to be VERY diagnosable---like endometriosis with adhesions wrapped around my colon that strangulated it and kinked it---hence I couldnt poop for years. (not literally) And many of the above docs just said I needed to eat more fiber, get more exercise and learn to deal with stress better.
I have actual photos of my colon being twisted and if I could, I would put them on my fridge to remind me that I WAS RIGHT and I am NOT CRAZY and those people are poor excuses for docs.
I have had many docs tell me that my symptoms could NOT be from Lyme. B/c they just dont KNOW about Lyme. They read about how it effects the large joints of the knees and hips. Well, I have lyme that primarily effects my shoulder. No one would believe it was a lyme symptom and they tossed me from doc to doc until I almost killed myself for REAL. I FLEW (as in airplane) to a LLMD who knew that the shoulder was ALSO a very real problem area for lyme sufferers.
I am sorry you had to go thru this with your girlfriend too. I think she is relatively new in your life? Otherwise why would you have to pretend anything in front of her? It is really important to take a real advocate with you to your doc meetings. Someone who will stick up for YOU and your needs.
I am sorry they are making you doubt your gut feelings and also the things you have researched. Your symptoms ARE all possibly from Lyme.
You will get unfrozen. It takes time, and a good LL doc. But you will. WHen is your Lyme doc appointment?
Ps---I also agree with Boejr---any doc that makes more than one diagnosis within a few minutes time is guessing. They are NOT diagnosiing.
good luck, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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I think a lot of people here have had this same experience. Myself included. I've seen 3 neuro's. I've had all the MRI's, evoked potentials, emg, etc....everything has come back normal.
I have lots of bad neuro symptoms. Hyperreflexia, numbness, tingling, twitching everywhere, pain everywhere. Today my legs and feet are numb, yesterday I could hardly move my arms, last week my face and arm were numb and moving on their own. The neuro's are clueless.
The third one did give me the fibro diagnosis. I never believed it but I did go to the rheumy to see what he had to say. He also said fibro but never checked me for the tender points.
So here we sit. No real answers, thinking our lives are over. What do we do?
Well, I try to get through each day. I'm still working part-time. It's very difficult.
I'm taking lyme treatment right now.
I'm with you though. If I knew I had something real bad I would quit my job and just live what I have left.
It's so hard not having any definite answer and not having anyone believe you. My own family believes the fibro thing.. I think it's bull s%%$t.
Posts: 340 | From Ohio | Registered: Oct 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
At least it's nice to know you're not alone and many of us have been victimized by doctors who do not have a clue about Lyme disease.
Get thee to a real LLMD.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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