Somebody Help Me

[kwaltke]

I honestly dont know if this should be on this page or a new topic I am so scared I just lost my medicaid Due to no reason that we can determine. Something about we made to much money and we make less than ever because of Bills disability We are driving out there tomorrow swords drawn and evidence and proof in hand. I honestly dont know what to do.............Karen

[kanderson]

karen at this point, i would be doing what you plan to do in the morning. if no resolution, i would file a grievance against them for their decision without a valid reason. i know here in arizona, they dropped alot of people due to budget cuts. it was terrible, i hope thats not the reason for you. i wish you loads of good luck.

please update us after your meeting with them.

[lharrison]

karen, at this point i would definetly file a grievance on behalf of the cuts on medicade that is just aweful i would write a letter to your insurer and explane your case in the letter just how sick you both are and how money in your household has gotten very slim and it is hard for you to get buy at this point and i wouldn"t let up untill this matter has been resolved

[Jim W]

<img src="http://www.strokeboard.net/public/style_emoticons/<#EMO_DIR#>/sad.gif" style="vertical-align:middle" emoid="" border="0" alt="sad.gif" /> I finally have been assigned my new medicaid doctor. Here starts my sade tale of woe. I was diagnosed with central pain and given the reasoning to the diagnosis and I absolutly meet all the criteria so I agree Central pain is my enemy. My old family physician worked with me as far as prescribing the necessary medication so I would not take leave of my senses completely and go mad. He had me on a pain med then he felt necessary to change that it was not as effective but it was somewhat effective so I was not going to make an issue of if. Now that I have been assigned to my new primary care doctor the first visit he cut my pain med by a third of what it was. On the second visit when he determined I had no withdrawl he cut it yet again. I now have 1/2 tablet or 1/3 of what it was 2 weeks ago. Still no withdrawl. I am however in enough pain that my functionig is in question . When he did this taking me off the hydrocodone he put me on Nurontin or gabpentin. Immediately I had little tremors and things like the world going tilt. But each time I took another one and it started to add up in my system I was a bit more off kilter and the tremors were more pronounced. He told me not to worry everything was just an adjustment. He doubled the amount of Nurontin and now I am wondering as it is affecting me like I have parkinsono or something. Not to mention the unsureness As I try to wal with the cane my step is all over the place and I fallen and come really close to falling a number of time I cant even sleem for that trembling feeling My pain level is conservatively at an 8 ok nine but I dont like to use nine unless its a surgical pain level. Does anyone know anything about nurontin or gabpentin and can some one please tell me why it is when you have REAL PAIN they are so reticent to give us the pain control we need? I am near 60 and I am not a drug seeker not one to consider as a source if they wished to buy a few. I dont get it and how do I relay that to my doctor who is way over board on not prescribing a necessary medication. Karen

Karen, find another physician. I have had 2 strokes. I also have diabethic neuropathy. I am on MS contin, daily , lortab PRN, Soma {PRN.I take 3 doses of neurotin which helps decrease the pain but doesn't stop it. The pain sometimes reaches a 10 which means I can't do anything except suffer. neurological pain is very difficult to treat so you need a physician who will work with you. Don't wait, get another doctor. Jim W

[mcdube]

Karen, I cant help as I am not in the US but I did want to sympathyze with you and wish you luck with your meetings tomorrow. All the best to you. You are in my thoughts and prayers. Go girl!!!

 

mc

[flowerbug]

I'm no doctor...but I have taken Neurontin and so did my mother. We both had about the same kinds of problems but my Mom lost her judgement also and couldn't take her meds properly. She and I both fell many times and were out in left field. The world spun around and there was definately an adverse reaction mentally. Both of us were left with permanent damage as a result. Both of us had diff. docs who also said "It will be ok, there's just an adjustment period. They ARE WRONG... I personally believe it is a very dangerous drug and that there will be law suits to prove it before too long!

[Jeanniebean]

Hi Karen, Every time I have the pain shooting threw my body I'm praying for all who are

suffering threw the same. You've gotten a great responsel remembertolaugh, Jeanniebean:cocktail:

[HostBruce]

Hi Karen,

 

I don't have any thing to add from all that other people have add here. But I can give you help in prayer. To know that God is taking care of you and that you have nothing to fear. You are the perfect reflection of God write where you are now. Your heritage is perfect right now! Just claim it.

 

 

Bruce Schwentker

[jadegreen]

Thanks for all your help, each and every one of you. I am going to ask for a referral to a specialist. Thanks again. Karen

hi Karen, i have been diagnosed with CPS also about 4 years ago now by a pain specialist. first it was Lyrica a very low dose but he may as well have sent me off with a case of whiskey, i was so wobbly and unsteady when walking at first but those symptoms went away after 10 days or so and as the dosage was increased the side effects however did not, the Lyrica did nothing for the pain, i broke my knee in 2 places recently and that was nowhere near as bad as the CPS. while in hospital the doc switched the Lyrica for Neurontin ( 300mgx 3 a day) i have no side effects from it but it does nothing for the CPS either so i dunno these drugs must be doing something maybe its a case of trial and error and getting the dosage right. It made me laugh in hospital when the drugs came around and they asked have you any pain ? i felt like saying do you mean my knee or elsewhere ? my knee i can bear the rest is driving me nuts and has been for years, whatever the answer in most cases a magical dose of 2 paracetamol was handed out. useless things i would not take them at home. its a difficult syndrome to treat even the experts will tell you that but persevere with your pain doc and hopefully you will get to a dosage that works without the side effects. A lot of these medics are very reluctant to start you on anything addictive and unfortunately for this syndrome you need the big guns

Wishing you the best of luck in your search for some reprieve from your pain without any disabling side effects.

Jade

[becky1]

Karen, I,too, was going to suggest you go to a pain management doc. Iagree with what everyone else said. However, I also wanted to add a couple of things.First off, Nerontin requires a GRADUAL withdrawal.So,just don't stop taking it until you find a doc who will work with you. I don't know about Medicaid in your state, either, but you might want to talk to yourMedicaid worker before talking to your PCP, because not all docs accept M edicaid, and, depending on your state, you may not even need a referral. GOOD LUCK, Becky

[Guest furiawill]

KAREN,

 

I'M NOT SURE WHAT IS GOING ON IN COLORADO ABOUT MEDICARE. I GET MY MED STUFF THROUGH THE V.A. I WILL KEEP YOU IN MY PRAYERS.

 

WILL

[Guest furiawill]

KAREN,

 

I'M NOT SURE WHAT IS GOING ON IN COLORADO ABOUT MEDICARE. I GET MY MED STUFF THROUGH THE V.A. I WILL KEEP YOU IN MY PRAYERS.

 

WILL

[ConnieR]

Karen, did you find help for your pain? What did you finally do for pain. I had a sroke 2/10/11 and am so miserable since hey tok the percocet and put me on Neurontin for burning. I burn, my joints hurt, I feel like there is a thousands of pounds I carry at all times. I ordered Tramadol from Mexico, I'm so desperate for relief.. It made my hsband so angry at me but he doesn't understand that I would almost do anything for relief from this for a little while. Please let me know what help you found for this? Siometimes I can tolerate this and other times I am just in tears. Thanks!

[arogers]

Hi Karen,

 

I have had some experience with Neurontin. I have trigeminal neuralgia and was prescribed Neurontin "off label" to help with the pain associated with TN. I know the feeling of off-balance well. It was one of the side effects I had when first starting the med. I had another side effect though that nobody has mentioned. I retained fluid while on it to the point that when I looked down at my feet I had no ankles. My feet and ankles were so swollen they hurt. I was taken off Neurontin, but I was told not to stop taking it all together, rather to wean myself off. The first week I reduced by 1 tablet, the next week by another tablet and the third week I took one tablet. By week four I was no longer taking it. I was cautioned that cutting it out all at once could cause seizures. Somebody posted above, Neurontin's labeled use is for epilepsy. I haven't done any research on how it helps. whether it is for pain or to control the seizures. For me, it was prescribed to control the attacks (I was once at my neurologist's office and used the work seizure and she about jumped down my throat...but I consider the attacks seizures because they come about without notice and are quite dibilitating, even though you can't see anything going on from the outside.)

 

I certainly agree with the responses encouraging you to find a pain management physician or a neurologist who specializes in stroke. Your medicaid PCP obviously goes by the "law" of 15 minute appointments and those 15 minutes are it for the month or whatever time you are assigned appointments. I also agree with Craig...doctors are paid by us (or Medicaid on our behalf). A doctor who makes an assumption about you based upon the "literature" does not have your best interest in mind as much as he is adhering to some dictate - probably the government in your case - regarding prescribing medications.

 

Please take care, Karen. I'm glad some can be successfully helped with Neurontin but my advice is always to stay away from it!!

 

Warmly,

 

Ann

[HostBruce]

Hi Karen,

 

I think every one is right about this! Your Dr should be more sure of himself. Tell him you would like to have a second opinion.

 

Keep the faith Karen you'll get this problem fixed I'm sure of it.

 

 

Bruce Schwentker

[wdtony]

I am sorry I don't have any helpful info for you. I am also having trouble getting financial assistance due to state budget cuts. I was just turned down by UC neurology. I go to UK neuroscience on Thursday.

 

I just found out what the terrible sensations I have been having are called. It is like pain but not like regular pain. In my left side (affected side, and also in my body's core) I get a nervous tickling which becomes unbearable. I read about it and finally came up with an answer. It is called thalamic pain or central nerve pain. God, can it get awful, I am sorry you have to deal with this, it makes me want to go run into traffic... it really makes me feel crazy and cry. The only thing that helps me is a low dose of xanax... which the doctors want me to stop taking. I am like you, not a druggie but I have nothing else to ease the pain and I am afraid to take any opiates.

 

I don't know much about neurontin but my sister was on it and it gave her weird seizure like side effects so she stopped taking it. I don't understand why the doctors won't stick with meds that they know work better.

 

Good luck to you.

[KimCrowe38]

Karen, I am SO sorry you are suffering! Like other members have already mentioned, I too think it's a good idea to seek a second medical opinion.(or third or whatever it takes!)

 

 

It's amazing to me how the government will dole out tens of thousands of dollars each year for Methadone treatments and for women who repeatedly have kid after kid with no "baby daddy" in sight, but when it comes to someone who is TRULY suffering, little help is available.

[ksmith]

 

It's amazing to me how the government will dole out tens of thousands of dollars each year for Methadone treatments and for women who repeatedly have kid after kid with no "baby daddy" in sight, but when it comes to someone who is TRULY suffering, little help is available.

 

 

 

well said

[CindySue]

I too have CPS (central pain syndrome). It started with electrical like pain in my foot about four months after my second stroke. I was diagnosed with a sprain and tossed between doctors until the symptoms worsened and the correct doctor made this diagnosis. Now, the syndrome has progress to burning in my feet and hands and electric pain if I move my feet wrong. I take 600 mg of gabapinten, (I don't spell well since my stroke and if spell check does not recognize a word I can be in real trouble ) three times a day. My pain is much better but still effects me daily. My tremors started before the medication, so I can't help you there. I have Parkinson like issues that are worse in the morning and get better as the day progresses. Some people cannot take gabapinten but I am sticking with it because the pain is unbearable without it. You may be dealing with pain from CPS and other pain. Hang in there. I saw a rheumatologist and can go up to 800 three times a day if I feel I need it. As with most drugs, the side effects abate over time.

Cindy

[hpoirier]

oh kareni am so sorry for your diognoses, but i don"t have central pain problem , but what i can tell you that i hope will help is that when i was on luvox an anti depresant medication , i did not react well to the drug , i got very toned i was shaking all of the time and then my doctor told me the same thing , that the drug need a minor adjustment to find the right amout of dosage and then once he found it it was great karin, so it is true some time the doctor has to find the right dosage for you, and until they do your body is just letting you know that that is not right, so just put faith in your doctor karin, and i know that you heard it before but just relax about it and put your mind of ease as you know to munch stress is no good for you or your recovery so just keep positive and know that your doctor is doing the best that he canjust always let the doctor know what is going on when you take this drug so he will know to readjusted the dosage , well i hope that this is helpful to you and i wish that there weas som,e thing that i coud do for you , but all i can do is offer my experiance with the same thing , all the best to you karen i wish you nothing but the very best in your journey of recovery

[hpoirier]

I agree that it can take time for them to tweek your meds Karin so hold tight. I had my experience this way with my seizure medication. One thing you might do though, is keep an accurate journal of how you are feeling and the physical things, you are noticing, everyday. Might help the doctor and it makes it much easier for you to relate to the doctors, when asked,plus, they get to "see it in writing"..Heather

[glaidice]

Hi, I'm 7-1/2 years post stroke. I have cps and neuropathy from the nerve damage post stroke. At first the burning was in my face and I was put on neurotin - but the side effects were horrible - I had echoing in my ears and the sensation of not being able to breathe when I would wake up. They then put me on Lyrica but It was not affordable although it did help some. Now I'm on tramadol and a low dose of xanax which seems to work most of the time. The bottom of my foot burns tremendously so they are giving me electrical stimulation (not the Tens unit) twice weekly. I'll have this treatment for 8 weeks to see if it helps. I go to a pain doctor so her intent is to get me off of these meds and pain free. It just seems that it's trial and error for all of us. Bless you. And as you can see, you're not alone.