Let it All Out!

[Sammantha]

Out of respect for Dr. Bedlack i went and saw Dr. Morgenlander......................... His resident spent a half hour talking with me and testing my reflexes, Dr. M comes in taps my elbow and does the foot test looks up at his resident and says, i dont think she has brisk reflexes. Then says, that i have such high anxiety that this is what is causing my problems. He had no idea of my muscle wasting, abnormal EMG, history, he did not even test for clonus........ He had only seen my MRI's and my last EMG which was purposely done on muscles that had not been affected in the first! I had all i could take i could not take anymore....... I then told him i was the one who asked for something for my anxiety because i was being sent to so many doctors all testing for one horrible thing after another........... I asked every question, like How does someone have an abnormal EMG all along a side of a body that a doctor notices wasting during a three month period! Why did Doctor Bedlack say i had brisk reflexes and why do the techs who do the EMG's note brisk reflexes and facics? How does anxiety cause chronic morning dry mouth that leads to thrush! How does anxiety cause facial spasms that lead into a clear change in the shape of the face and tongue twitching! He shrugged his shoulders to all except to say that EMG's are all in the interptreter............. You know he should be the posterboard for that commercial where everyone shrugs there shoulders........... I can't believe Dr. Bedlack would send me to him when he clearly knows that i was exhausted from seeing doctors and that i could not handle going to another one and explaining everything.... Well lucky for me Dr. Morgenlander did not want to hear anything, i think he just wanted to clear the neurology department from having to keep seeing me.... Dr. Bedlack has a January appointment set up for me but i am cancelling it. Say La Vie, i know i did not spell that right but if i want to keep sane i have to set aside all these things, even the difficulty breathing which can be scary. My quality of life is at an all time low and it is affecting my children tremedously. Not to mention my family gets angrier than i do when i come back with no answers, it especially scares my mom who sees how i have changed physically and there is nothing that can be done. I just want to thank Al and everyone on this site for the free therapy and i am not ready to let that go just yet! Best wishes to everyone, Sammantha

 

[laurel]

Dear Sammantha,
What a frustrating and confusing experience. You're not alone in having bad experiences with doctors. Hang in there, and vent here as needed.
Laurel

 

[olly]

hi sammantha

sorry about your experience with the "up his own backside" neuro.
i had the same thing happen when i went to see another neuro other than my own .
this neuro also contradicted findings my neuro had stated and tried to make a big deal of insignificant symptoms not related to the mnd now.
the fact is my neuro is an old proffesor in his sixtys and well respected.
he has followed my progression from the start so knows if something is not right.
when my mri,s and tests kept coming back ok he told me he knew something was wrong somewere.
if there was,nt he would not have spent years trying .
trust in your origional neuro,stick with them so they can follow your progression and will notice more if theres any changes.
i hope you are feeling better after your ordeal,i cried for a week.
take good care
caroline:-D

 

[lovelily]

Hi Sammantha....I am sorry you had this 'dreadful' experience! My opinion is that Neurologists like to play Psychiatrist, and they love to see how long they can torment you until you 'snap'! ;-) Well....not really, but this is certainly how you can feel!

When I began to have muscle weakness my neuro thought I was a kook. Not my PCP. He new me for many years (as did neuro) but PCP, wanted a muscle biopsy...to the 'horror' of my neurologist.

Not less than 3 doctors came to see me and ask 'why' I wanted to 'cut' myself? I had never heard that expression before, and just looked at 'them' like they were nutty. I said, "go ask my doctor...he ordered, the test!"...A battled ensured between 3 doctors. Neuro, surgeon, and rheumatologist....all payed me a nasty visit.

Then the Psychiatrist came to see me. (I was hospitalized, at the time) One hour later, he patted me on the knee, and said I was as sane as he. :smile: ;-)

Surgeon opened me up and immediately (I guess) saw there was something wrong with the muscle...as he changed his thought process about my PCP. I was awake for the first biopsy.

Talk about an over night change in doctor attitudes towards their patient! YES!

I stayed with my neuro, and rheumatologist. I like the validation. Second biopsy showed other disturbing issues.

My point is...Doctors, don't know everything. They think they do. I just takes that one right person to have faith in you and follow it through.

Maybe a biopsy would give you more conclusive answers.

It's so very frustrating when doctors change their minds over and over. It seems that he 'used' this other neurologist to switch out his opinion. Not fair.

I will keep you in my prayers for your answers. I have none, either. Just the beginning of something, but not sure what.

 

[Sammantha]

Oh my gosh, thank you everyone for sharing your experiences......... I am usually not on the computer this early but i could not sleep well..... I have a lot of anger due to all this and i am not sure how to deal with it. The sadness comes out whether i want it to or not, maybe the anger is good for me because it is causing me to speak up when i never used to. It's horrible what you all went through, especially you lovelily but it brings me a sense of commradery. For a long time i was fighting for my health, now i am fighting for a diagnosis................. I dont want to fight anymore. I did everything possible to get healthy and that did not happen. So i just have to function with what i have now, i have just about gone to the highest level of medecine and still no help. I feel like like my illness and the doctor's have won, i give up............. I am going to look to God and myself for answers and ofcourse all my fellow comrades! The only problem is i cant hide my progression from my family, it is visible and they worry me to death.... I guess i should have a talk with them about it.....Let them know that there is nothing more i can do and that pressuring me to get help, has not been helpful..... I know they do it out of love though....... Well i hope everyone has a great week! Lots of love, Sammantha

 

[patricia1]

You want a truthful and educated answer Go to John Hopkins where most of the als studies come from See Dr Rothstein Youll get a answer either way.
And if you have ALs he will know

Good luck

Pat

 

[sdsyd]

Sammantha-

Its like a roller coaster, aint it? Hang in there. My advice is to vent all you can, then try to let it go and don't "take it back"- really let it go and know that there are many people on this forum who truly understand. Sorry, no profound wisdom, just support.

Love,
Cindy

 

[lydia]

Hi Sammantha, I feel so bad for you. What an experience! I also recently had a bizarre experience, but it was nothing compared to yours! I am only just beginning to understand/relate when you say you are exhausted from repeating your story to every health professional and are just too tired to keep doing it. I am new to this journey but am already feeling like, "do I really have to describe everything, all over again?" to yet another person and I have only done it 9 times so far. To be going through this search for so long, I don't know how any of you do it. If that is what is in store for me, I am even more grateful for this forum.

Just an aside illustrating my wacked neuro: she wrote in her report on the follow-up visit that there is no evidence of widespread fasciculations and no evidence of any cogwheel rigidity. This not only contradicts what she found and wrote in her first report, but she apparently determined this without actually touching me or examining me in any way. She only read test results. Is she even paying any attention?

Lydia

 

[awieleba]

Hi Sam

I also feel for you and as many, can relate. It is sooo frustrating. Yea, anxiety causes atrophy, weakness, cramping. spasms, and fasics all over! Really? them how come there are not more people doing that, My husband is under more stress than anyone could think, and he doesnt have these synptoms! Half the people I know are under stress, but some how there muscles are in tack.

I have done the same, I just have accpected that this is the new me and I may find answers in the years to come but not anytime soon. I try to think and feel blessed that I have years when there are sooo many who dont!

 

[rose]

Sam, I don't even know what to say. You know I understand the frustration, the let down at no answers, the hurt from his awful attitude!

You can't give up! I know its not in your best interest to obsess over everything, and its good to try to turn your thoughts to better things, that's not to say that you need to stop making the effort to get to the bottom of this!

I've got to echo Patricia about Hopkins. Insurance or no insurance, there has got to be a way to get you there if you're willing. Its like a different world there. You remember when I had that bad experience recently in NYC? It could never have happened there.

You deserve to have a thorough exam from a neurologist that is willing to take the time.

I'm so disappointed to come back home and read about your experience, I was thinking of you while I was away, wanting and hoping you'd gotten somewhere!

Big hugs to you, and don't ever think you're alone in this!

 

[Sammantha]

Thanks Rose, i will keep Hopkins in mind for when and if i decline any further. I know i will but i dont want to go until then. I could not even get out of bed this morning my legs hurt so much and i was so exhausted! I spent all day yesterday running around applying for part time jobs. What am i going to do when i get one? I am going to pray real hard for the courage and strength to do it. I used to have the mentality of being the hardest worker, the best employee, mother etc...... Now i am praying that i will be able to get by if and when i get hired. My mom has been so helpful. My oldest son is playing first base in the majors and his coach said his glove was too small and to get a new one, so my mom bought it for him. His 11th birthday is coming up and i spoke with him about not having a party. Every year i always threw a big halloween bash for him. He said, okay............ I am so greatful i have such a wonderful mother and family. A friend took me to see Nights in Rodanthe and i highly recommend it. I kept the tears back until the daughter took over the parenting role when the mom was too sad. I really hope i get a call for work so that i have something that takes my mind off all this. I feel really close to you Rose and hope you are doing well today, and have a good weekend....... I will be at the Seafood Festival helping my son's school. I never was able to do that before! I even attended a PTA meeting for the first time!