pennstr

[monotreme]

How did CCF go?  I've been praying for a good appt for you.....Craig

[yorkieville]

Hi, Penn. I've been trying to get caught up on your appt. I am so sorry that you didn't get a definite diagnosis of something. I know that is beyond frustrating. When I was sitting in the waiting room Thursday, I was thinking about you, and wishing I could have been there with you on Wednesday to offer you some moral support.

I'm sorry you had such a bad reaction to a half-dose. Thank goodness you didn't take a full dose.

I hope you will get some help at the Movement Disorder Clinic.

I know the 'waiting game' is frustrating. We want to know what is wrong with us, and we want to know YESTERDAY!

Try to hang in there,

HUGS
Sheila

[Momzilla]

I know exactly what you mean--move forward.  And I think I have the work attitude you do.  My boss doesn't seem to think so.  She makes her children go to school even when they've thrown up.  But, that's a whole different book.

I know you hate to use another sick or personal day.  But you'd better find out what's going on.  Looks like you're getting closer to the Wizard.  You're at least in Emerald City.  Get your nap.  Take care of your cold!

Scare Crow*

[pennst8r]

No, it wasn't a diagnosis, just a "let's try this and see if it works". There is not other drug to try to rule that out, according to doc. She said she's just not sure of where I fit. Of course, she ordered no tests to help find out either...  I still have decent strength I think is the confusing thing. Don't know if it's relevant or not, but I was strong as a bull before - not that strong now, but she'd have no way of knowing that. She thought that if this med worked, then we'd have lucked out with finding a Dx. She was basing the idea solely on my spasms; kind of ignored all the other symptoms. Since it did not work, we're back to the drawing board. I spasmed anyway while I was "trippin'" on the Sinemet. Still no Dx. I really did not feel that was the problem anyway, since it did not explain the rest of my managerie of buzzes, vibrations, squeezes, etc.....  It's funny, when I read more online about the drug, it can cause dyskinesias, muscle tics and spasms, headaches, dizziness, neuropathy... That's all I can remember, but those are some of the things I'm trying to get rid of. I just love pharmaceuticals, don't you?

Really thought I was being blown off again, but she did now refer me to CCF's Movement Disorder Center. Hopefully they'll at least test. T-lynn said she got some help there. It took me 3.5 hours to get to CCF - at least draw some blood LOL! I don't want to waste all my days off.

I am feeling better. Really tired, and now have a nice old-fashioned head cold on top. Anyway, I need a nap! Then I plan to try to DO something productive even if it kills me!

Thanks for thinking of me

Penn

[Momzilla]

Hey!

Better day for me, today; how about you?  Something tells me it's got to be!   No hallucinations would have to be a big plus.  Unless you paid good money for it, I suppose.  Feeling better?

I was sort of surprised about the Parkinson's thing, were you?  I'm thinking MS.  Especially with your first degree relative having it.  But I'm not a doctor.  Do you think the medicine having that effect on you means it's not Parkinson's related dyskinesia, or it's just not the medicine for you?   I don't know what to say.  If you have a diagnosis, I'm glad for you.  And uneasy, I guess.  I will have to learn more about it to see what it means for you.  Let me get back to you on that, OK?

I'm sorry you had such a horrid reaction to the HALF pill!  WOW!  If that is your diagnosis, there's got to be something better they can give you.  MUST be.  But, still, WOW!  That there is some chemical that's legal they have come up with to help ill people that makes other ill people hallucinate so, is amazing, don't you think?  What happens if you take the OTHER half, Alice?  Hmmmm.....

Anyway, take care.  I'll catch up with you later.  Trying to clean up a bit today while my little guys are bowling with my husband.  Everything's burning and tingling, so I might as well clean like lightning!

Feel well!

Zilla*

[T-lynn]

Sorry to hear that the med didn't work.I had terrible hallucinations and serious side effects back in 1998 from decadron IV infusion,past version to solu-medrol.

I've seen several Drs at the CCF,a neurosurgeon ,been to the movement clinic,pain center,DR.K of course and the mellon MS institute.by far I liked Dr.K the most as she done the most for me and done several follow ups.I also seen DR Stone at the mellon institute,she was good and knowledgeable but I preferred to stay with DR .K as she was more compasionate than DR.Stone.

I put a team together of Drs, together locally and they cooralate with each other.I wouldn't trade them for nothing.

You have to follow your heart as you know how you feel and what you need.

What ever is going on I'm sure you'll get answers soon,as I know its hard to hear that ya don't fit any one particular Dx yet.I heard everything from parkinsons,neuropathy,myopathy,pre menopause,sjorgen,meneiere"s and lord knows what else.A shrink was even mentioned.

But I knew how I felt and definately wasn't giving up.Physical therapy done me wonders and daily stretches help also to curb some of the spasms as the spasm can cause muscles to tighten to the point they can shorten.I have funky toes on my right foot,they use to turn under even the side of my foot would,these old leg braces straightened that out.

I am glad you are feeling better.

You are in my thoughts and prayers

[grannyhotwheels]

I'm just getting caught up on whats been going on and I am so sorry.  I was so hoping and praying that you would get some answers.  I know the Lord has a plan for you and I know he will give you answers but it's just gonna have to be on his time and not ours.

Hang in there and I'll keep praying.
Carol

[monotreme]

When I was at CCF S. said that all the doctors in the neuromuscular center are good except one.  She really likes Gina Tavi (not sure if I have the name exactly right).   I never got anything good for doc recommendations from the MS center either, but if the therapist is good, I will let you know.  He is the only MS certified physical therapist in the state.  If anyone could help weak legs I think he could.   have a restful weekend.  ...Craig

[pennst8r]

Quix - no need to apologize to me ever - what kind of den mother would you be if you didn't give folks a kick in the pants when they need one=) It's a very endearing quality, not a drill sargeant ( perhaps a fine fighter of windmills though;)!

Craig, I don't remember that doctor, but I think I'll do some archive browsing later to see what I can find. My husband is a mining/mineral processing engineer and fellow Pennst8r (JoePa rocks!) As for the MS society around here, I emailed them months ago looking for a neuro who knows what they're doing, and still have never received a reply. My one sister is a member; maybe she knows.

Johnny, Hi, I've seen your posts, but don't think we've "spoken". You're outlook re every day you wake up being good - words to live by:) My agency has been very supportive so far; like yours we're a family. I just don't want to push it and get"disowned" though...lol!

Zilla, Em, Fla. mom, Jazzy, Rick & the rest of the forum - speaking of families! You folks are such a blessing to have in my life. My sisters can certainly relate to what I'm going through, but they really don't like to talk about it. The oldest won't even acknowledge the diagnosis - "if I ignore it, maybe it will go away" attitude. My mother had that attitude and it cost her ever meeting some of her grandchildren. My father worries so much that another of his girls is sick, I don't like to tell him too much. Sooo... you have been my cyber-family. I cannot tell you how much it means to me to be able to talk to people who really know what I'm going through, and don't either pity me or think I'm just crackers. Thank you all so very much for all your prayers. Know that you are in mine as well.

Hugs to all

Penn

[Momzilla]

Man.  Sorry.  Tried to keep up with your posts.  Eyes are jerking me around, so to speak.  I was so worried about you yesterday!  I pray that they get to the bottom of what is jerking YOU around.

More tomorrow.  Migrainy, too.

Later.

Zilla*

[monotreme]

Penn, do you want to know the name of the doc in the center that dr. S said not ot go to?  ..Craig

[Quixotic1]

:(   Sorry about the drill sergeant routine.  I was just worried.  Q

[pennst8r]

Wow, I'm a little overwhelmed by all you awesome people! I did call CCF today. Dr. K said absolutely do not take the med again. Unfortunately there's not alternative though - hope that's not what's wrong with me...lol. I's be SOL. So anyway, she is sending me to the Movement Disorder Center, also @ CCF. T-lynn has been and said they will do the testing if it's warranted. I'm waiting to get my appt date. Just got home form work, so I'll try to answer some of the quesitons folks asked later when I get a chance to recoup.

Feeling better today, by the way. Not ready to go out dancing or anything, but I'll take it!!!

Penn

[EL18]

Hi Penn.  Just wanted to send you my best wishes, you seem to be having a really rough time.

My dad had parkinson's so I do understand about the meds.  He refusd to take any for about 8 years but now takes meds.  They seem to help but it tooks ages for him to get then right dose and meds.

Really hope things improve for you.

Take care

Em

[floridamom2]

I am sorry your visit was frustrating!  I can imagine how exhausting it must be to put all that hope into that big visit and have it end up the way it did with no tests and no diagnosis.  

Hang in there and know I am praying for you to have some extra strength to deal with this and those new meds, they sound horrible.

Take care!
Kristin

[monotreme]

I live in the Wilmington DE area so Phila is very close.  And my wife went to Jefferson nursing school and worked at the hospital before we had kids.  She actually took me to the medical school library this past summer and we read lots of medical textbooks on neurological disorders.  However, if a doctor doesn't diagnose you, you are sunk.   I am an engineer at a DE company.  Also, Penn, do you know if your local MS chapter has physical therapists??  My wife called a MS physical therapist who sees private patirents.  He will do a three hour evaluation of all your muscles and tell you if he thinks you are typical of MS.  He also looks at labs, mri reports etc..  I am waiting for him to have an opening.  The neuro thought physical therapy would help me, so I am going to go to this therapist.  He designs a therapy program for you.  I thought I would have the best chance of getting some leg strength back with him.     Could that be something you could get access to?  What does your primary doc think of the CCF drug?  If you can't reach CCF, call the primary doc.  Good Luck...keep in touch....Craig   p,s,...I have a niece who goes to Penn State and lives close to the campus.

[Johnny Utah]

Sounds like you didn't get the help you expected and the medication sounds just dreadful. I hope your feeling better today. I, and most others can relate to the work related issues. I do engineering work for a semiconductor manufacture and have made so many mental mistakes in the last couple years I wonder why they still keep me around. To be honest, they are a pretty good group to work for and try to treat everyone like family. We have great benefits (thank god). I see my mistakes and issues and I'm far more critical on myself than they are. They are aware of my condition and most of the time ask how I'm doing and understand when your having a bad day. It's when bad days become bad weeks that I start to wonder.

You hang in there, and take Quix's advise, call about the meds, some reactions can be very bad and sometimes its about finding the right dosage. Even though two individuals are the same weight and height the same dosage may be inappropriate.

My uncle has Parkinson's and it took him months to get his meds just right. He has no problems now with the meds but they didn't seem to help the tremors much. You should see us on the golf course... I can't remember where I hit my ball and he has more shakes than Sergio Garcia.. lol

Keep smiling and remember that every time you wakeup it's going to be a good day. I have been in and out of hospitals a lot recently and all I have to do is look over at someone that is really suffering (not that we are not) and I think it could be worse.

Have a great day and keep us posted on the meds, hopefully you get some relief without having to be zoned out all day.

Johnny

[Jazzyfizzle]

Hi Penn,  I hope they can try something different. Those side effects sound hideous. I wish the visit would have given you more answers. All my thoughts

Jazzy fizzle

[pennst8r]

My husband pulled put the drug info sheet from the pharmacy, and it does list hallucination as a possible side effect. I guess I never expect to have the side effects listed under the serious, call-your-doctor section. It literally took until late this afternoon for me to "wake up" - and now I can't go to sleep, lol. It's not an uncommonly used drug - tons of Parkinsons patients take it - I just had a bad reaction. I'm going to call in the morning and see if there's anything less scary I can take, or if I should just cut to the chase and make an appt with the movement disorder clinic.

Dr. K is a neuromuscular specialist. You might have ended up with the same doc had you gone to the neuromuscular center. I had a 6 week wait for my appt. Yorkieville was there today - she got her appt quick. Same doc. I hope she's okay; haven't heard anything. She must not be back yet. I know she had a longer drive.

You mentioned Phildelphia. Are you in PA, too? My husband is an engineer too. What branch are you in?

Penn

[monotreme]

Dr. Stone said I should go to the neuromuscular center and see a peripheral neuropathy neurologist.  I couldn't get an appt till mid October and since prior to the appt at CCF, I went to a neurosurgeon at Jefferson in Phila who has been following my disc disease and spine arthritis.  He yelled at me ( I am not exaggerating) and told me that my leg weakness is coming from my brain and I should get to a neurologist who will admit that.   When I told Dr. Stone that, she said that I just 'don't fit" the true picture of MS. What exactly is a true picture of MS anyway?   Then when I went to the new neuro in North Jersey, he said it is obvious from my neuro exam and test results that it is not a peripheral neuropathy and ordered the LP.   That is when he made a comment about CCF being a joke.  He said that muscle spasms usually come from the brain, and aren't present in peripheral neuropathies.  Even back in Fall 2006, when Mayo Clinic said to come back when I am worse, I guess I should have expected nothing from CCF too.  I hope you have better luck.  My wife looked up your drug in her nursing drug book.  It looks like it increases dopamine in your brain.  Maybe that is what gave you the hallucination?  It also causes excessive sleepiness.  I will definitely keep praying Penn.   You deserve to enjoy your life...Craig

[Ramraji]

Penn, your exam results sound similar to my own. I liked my Nuero but the diagnosis left me hanging. I didn't even get a point in any direction, so at least you have an attempt at a Dx. I also can relate to your situtation as work because I too am a supervisor with a lot of responsiblitiy. I worry that if my legs get any worse I will be like a wounded gazelle in a open field surrounded by lions. Even more challenging I can't take certain drugs that might help while I'm working because I fall under the Federal Transportation Administration rules for safety sensitive jobs.

Good luck with your meds. It may be just an adjustment period before you feel better. Rick

[pennst8r]

What other department did they send you to? Did you go, or just go somewhere else? I am willing to give the Movement Disorder Clinic a chance, since they helped T-lynn. I'll go wherever I need to, I guess, to feel better. I may not get my old life back, but I'd really like to get more frequent glimpses of the person I was a year ago.

Thanks so much for your prayers. I hope that you find answers soon too.

[monotreme]

I would think you are exactly correct in thinking you may have MS because you have sisters who have the disease.  If you look at the statistics, the odds of you getting the disease are so much higher than someone who doesn't have immediate family members with MS.  I guess since I had such a negative experience at CCF and also had no tests done and also was referred to aonother dept, I can't help but think that kind of thing is standard operating protocol for CCF.  The new neuro I went to after the CCF appt thought CCF was a joke.  So go ahead and question and make Dr. K. justify her decision of the drug of choice for you.  And I guess because I am a male engineer, a doctor being nice to me means nothing if I am not getting help.  Hang in there and I hope you get a better drug...Craig

[pennst8r]

By the way, the "hallucination" from the Sinemet was silver gray 3-D numerals sort of dancing about on a medium gray drive in movie-type "screen" - sort of like cartoons from when my mom was young. I was awake; there were no screens with dancing numbers. Never having seen an hallucination myself, I am assuming that was one???

Penn

[pennst8r]

Yes, Ma'am!!! I will call first thing in the morning. I would have called this am, but I left her card @ home and our computers at work are watched VERY closely!!! By the time I get home, she's gone. I didn't think I should page her over it. I didn't take the pill today though - too scared. Thanks for keeping me in line!

Penn