I'm beginning to think my neuro needs reeducated.I really think he's trying to do me in(lol).he prescribed quinine for my spasms,okay once a night no problem until he increased it to 3 times a day,well that didn't work.A trip to ER tonight.Thank goodness the ER doc was a good one, actually he was great!He gave me something to counter act the quinine overdose.Then he got on the phone to my neuro,and told him I had balance issues along with dizziness,finally a script for vertigo.Antivert.
My neuro has never seen the unstable balance,so I don't think he believed me when I told him.Now I have tinnitis,severe ringing in the ears,with some hearing loss they beleive from the quinine,which can be permanant.
Now since the neuro prescribed the antivert the ER doc is saying don't take the baclofen or zanaflex,they are all sedative meds.
My neuro knows I'm on these meds he prescribed them!!!He's driving me crazy.I have to call him on Friday to let him know how I'm doing.I really like my neuro,he's got a great sense of humor but he sure don't check out the meds he prescribes.
I sure hope he figures something out for the high pitch ringing in my ears,its difficult to hear anything.I realize tinnitis is a symptom of MS,but this is his fault,this is a nasty side effect of quinine over dose,nerve damage to the fine nerves of the ear.As if I needed anything else.
I just needed to vent.
The following user gives a hug of support to duttin:
Toni, maybe you could benefit by talking to someone with more training then we have. I think we all deal with frustration and depression. When your meds are changing and you don't feel your physicians are meeting your needs, perhaps speaking with a professional listener has benefits. If you can divulge these emotions with a specialist, it will free you to be more relaxed with your family and friends.
I know you have many, many symptoms and aren't taking CRABs so it has to be very difficult for you. Possibly if you were able to speak with someone who had the training to help you unburden your worries; you could dwell more on your recovery.
Thank you for your advice,we have a local MS society and MS meetings and I attend regularly.As seeing a therapists I do.When I was diagnosed that was a requirement from my neuro.
I have no problem being relaxed with my family and friends.I go and do all I can.I attend all family function and go with my children and hubby.I do not suffer from depression.I have found being with friends and family is the best medicine for this disease.Especially laughter.I enjoy having fun and I have never let the MS stop that.
I am not on the crabs,I have had several allergiers to meds and a few have been life threatening and this has been discussed with my neuro.Right now I am going through testing to see if copaxone is gonna cause an allergic reaction.
Last night I was FRUSTRATED and upset.This disease is bad enough,but losing hearing on top of it just added to it.This just don't effect me it effects my family.I have put a call into my therapist and seeing an audiologist specialist this afternoon.
With MS there's always worries.Everytime I walk I am reminded I have this Disease.It has completly diminished my right leg.I may not be able to run a marathon,but it will not slow me down from the things I enjoy.I don't dwell on it ,it has become part of me and who I am.I refuse to let anyone feel sorry for me because I have MS.
Like I stated I like my NEURO,and I should of spoke up and reminded him of my other meds.He is great with his patients and has compassion for people.You don't see that everyday.
LaLady you have a good day,I'm taking my mom to breakfast and shopping!!!
Hi, Toni. I don't take a lot of meds, but I've learned that EVERY time a doctor suggests or prescribes something I ask: What are the possible side-effects? and Will this cause problems with [I list ALL the meds I'm currently taking]? They do like to write prescriptions and run out the door, but I won't fill one until I get answers, and at least once the doctor has changed his mind as a result of my questions.
Another thing I've done is to research the med on the internet. I do that when it is a drug I know nothing about. One of the things I've seen is dosing guidelines.
I've seen too many people seriously hurt by medication mistakes, I just don't trust ANY doctor...
I definatly learned my lesson.I had been on quinine for night use only,never any side effects.But when he raised it to control the muscle spasms it kicked my butt.These last 5 days have been difficult more sleeping than a wake.I see neuro tomorrow.
Sorry to hear you are going through more problems trying to get other things corrected! I'm curious to know what the audiologist says about your hearing. Hearing loss was one of my very first symptoms (didn't know it at the time) and although I've been running around with my hearing test results for 2 years, none of the many doctors/specialists, seem to know what they mean or what to do about them. One did suggest I see another audiologist but I questioned that, if I already have the results in my hand what is the point? I just want to know where to go from here. Hopefully the audiologist can tell you something, like if the medication or the MS has caused the hearing loss. Sounds like in your case it's definitely the medication and I pray it will improve with time but maybe they can point you in a direction for some help until it does. Seems hearing loss is the least important of the symptoms of MS, none of the doctors seem worried about it in the least. They skip over it, ignore it completely or play it down so you really have to fight with them to get them to listen. Guess they feel of all the things to lose, hearing is the best thing, or at least that's the impression I've walked away with each time I've asked about it.
Good luck in getting the quinine overdose straightened out too! It's great you found an ER doctor was knowledgeable enough to know what to do. Like you I would be getting paranoid, telling them my neuro was trying to do me in!
Audiologist stated there's minimal damage in left ear and minor in right.For whats thats worth.Left ear the hearing has been muffelled(sp) after a viral infection years ago.The ringing is still persistant and possibly perminent.Only time will tell.I still have the vertigo,antivert is helping but fatigue has set in.I have done nothing but sleep nonstop.I made myself move today with short naps in between.I feel like crap and every muscle in my body wants to ache.
The audiologist has no way of telling if the quinine or MS has played apart of the hearing damage.She stated if was the MS ,there would be a lesion in the brain stem area,but then she stated there could be tiny lesions that an MRI won't pick up.
My neuro is aware that I told the ER DR that I said he was trying to do me in.He laughed,he said I must of felt like crap to make that statement.I couldn't hold my head up the ears ringing and the vertigo.He says he likes my sense of humor.
I'm no longer taking the quinine,neuro took me off of it immediatly.
I pray none of this is permanent! The ringing sound every now and then is annoying to say the least but to have it constantly would be terrible. My father had a boss years ago who had the permanent ringing in his ears (not MS related), there was a device they fitted behind his ear that off set the ringing to make it more bearable. Can't remember anything else about it, should have been listening more carefully to what was being said but it was many years ago, I was young and healthy at the time, never thought about hearing being an issue by the time I reached my 40's. Did the audiologist suggest anything for the hearing or the ringing? Hearing aids? Anything?
Glad they took you off quinine completely. Did your neuro say how long it would take to get it completely out of your system?
Still haven't heard anything about my 2nd opinion appointment with the local MS neurologist. Wondering now if Medicaid has denied the visit? I see my primary doctor again next week so I'll find out then why the appointment hasn't been scheduled. I've been so depressed the past couple of weeks it takes every bit of energy in my body to get out of bed. I'm not sleeping all day but prefer to stay in bed where I don't have to deal with the world. The doctor prescribed another anti-depressant but it hasn't helped. Found out yesterday Medicaid still hasn't pre-authorized it so it's doubtful they will since it's been over 2 weeks. I was taking samples until it was approved so looks like the doctor is going to have to switch it again anyway. If they ever get my medications straightened out it might help me feel a lot better as I'm sure it will you!
Still no change with the ears and my balance is way off.The vertigo has subsided until I lay down,if I turn my head a certain way I feel like I'm on a boat.The room don't spin or anything.The audiologist just said turn up the back ground noise.Its not bad when I'm moving only at rest.Quinine is out of my system,but they are not for sure how long these side effects will last.
I hope you hear something soon.These Drs. don't think of what we as patients go through.I hope your depression subsides.i went through a bout of it a year ago.Not knowing is hard.
I was reading info from the cleveland clinic on MS and lesions.The info was very impressive coming from a top neuro in the country.He stated about lesions appearing from demyelination and then being healed through remyelination.A bodies natural way of repairing itself in the early stages of MS.This is why there are so many symptoms with not enough evidence of the disease until the demyelination process is out of control and the process can't be reversed.He insist thats why LP are so important today.To look for myelin basic protein.The only way it can be elevated is if demyelination is happening.Most neuro's state it's non-specific.He also stated that he urges neuro's to test for myelin basic protein in the blood serum.There was a study on MBP in the spinal fluid and blood serum,if these were both positive then MS was 99.9% positive,through this study of 10 years it had exceptional results.Some countries use this method of detecting MS,in early stages,not ours.Makes one wonder.Thought this might be of interest,since your MBP levels were high.
Take care of yourself,keep moving,honestly staying in bed isn't gonna help you or speed up your appointments.I know its hard.Don't let the medical community keep you down.You know your body and that its not functioning right.
Oh,by the way you ain't gonna find a honey with good insurance by staying in bed.
My neuro is good.He is trying to releive the muscle spasms before they cripple my legs.He's given me new meds and I'm seeing a neuro audiologist soon since the ringing in my ears and balance is off,the vertigo is gone.If it was from the quinine the ringing should of subsided some.I had ringing in the right ear before the quinine.It was over looked.
Glad to hear the vertigo has subsided unless you are laying down. That's a beginning to healing but realize it's still frustrating to deal with when laying down. Still praying all your side effects subside over time!
Took a MS break this past week but I'm back. Decided to concentrate on trying to get beyond the depression and not think about the MS to see if it helped any. Did manage to accomplish quite a bit on the housework but not as much as hoped before pooping out from exhaustion. Just can't go like I once did! My best girlfriend for 27 years and I were talking, when she found out I was laying around in bed, depressed, she yelled at me to get up and do something or she was coming to Kentucky to get me up. I laughed about it later, telling her she scared me out of bed. The doctor also changed my anti-depressant and Medicaid finally pre-authorized it, took them 3 weeks to get to the paper work. Think the new medication is helping out too. It's called Wellbutrin XL.
My primary still hasn't contacted me about the appointment they were going to make with the other neurologist who specializes in MS. I go back to see her on Monday so maybe they can tell me why. Imagine it's Medicaid causing the hold up. They could be considering it a 3rd opinion visit and it's being denied, but I should still be notified if that's what happened. There is no communication between patient and doctor with my primary. They have too many patients to keep up.
Wish all the neuros would read what you read about the LP results and high protein levels in spinal fluid and blood. I know I have MS, there is absolutely no doubt in my mind, but getting these neuros to decided for certain is like pulling alligators teeth! Also found out something interesting last week, a
2nd cousin of mine was thought to have had MS too but they never followed up with tests because she was an older lady and her daughter decided it was a pinched nerve in her back causing her problems so she never took her back to the neurologist to pursue it. The cousin died 2 years ago from a stroke so we'll never know. Her daughter sent me an e-mail last week telling me they would probably find out mine wasn't MS either, instead it was probably a pinched nerve in my back too. Nice to find out there are "doctors" in my family!
Speaking of honeys, my old high school sweetheart is popping in and out of my life by phone right now. Haven't decided if he's helping the situation or making me feel worse. I dislike wishy-washy men and he's being really wishy-washy but I do like him a lot AND he has good insurance so I'm trying to tolerate his wishy-washyness a little bit longer to see what he's going to do, if anything. Like him so much actually forgot about the insurance side of it.
Hope your vertigo continues to get better and the other side effects gradually go away!
I'm glad you finally got your rump out of that bed.
I seen neuro on Thursday,had a MRI on my ears yesterday.Yes, my ears.I guess to see why the ringing and decrease in the hearing.My balance is really bad,but no vertigo.My left eye gets stuck when moving it side to side.That puzzled my neuro.Seeing neuro eye Dr soon.And seeing some neuro ear guy in October.
My neuro seems to be very aggressive with treatment.Which is great.But I'm an exhausted with all the testing.
I ask if stress could be a factor.He doesn't think so.he's the only DR that I have seen that hasn't mentioned Stress,depression or anxiety.
Lynne,remember even with a comfirmed DX,they can only treat the symptoms.Take advantage of the good days and sleep on the bad.I know sitting around waiting for a dx is hard.But it could be down the road before the DX comes.
Glad ya got somethings done.I move at a snails pace,but have come to learn limitations.
I hope it works out with you and the high school friend.Socializing can make those symptoms disappear,even temporarly.
Still moving slow but accomplishing things around the house little by little. My bedroom actually looks like a bedroom again! Told my daughters we should have a party to celebrate the accomplishment of my bedroom since it was the worst room in the house but we might mess up the rest of the house celebrating so we would have to skip it.
The primary doctor said the MS neurologist she wanted to refer me to won't see Medicaid patients so unless I could afford to pay for the visit out of pocket there is no one she can get me in to see. The only option is University of Kentucky which is useless as discovered first time around. I told her I did have another option too. My choice to see no one for the time being as long as she will continue prescribing what the first neurologist was prescribing for spasms and fatigue. It really puzzles me my first neuro won't prescribing any of the CRABs when he's certain enough it's MS to write a letter to the disability board telling them it is MS and I can't work anymore. Just doesn't make sense! Anyway, the primary agreed to keep prescribing the fatigue and spasm medications so this gives me a couple of months to see if any changes come about which allow me to see a better specialist or my condition changes to make a diagnosis easier for any specialist.
In the meantime, my gallbladder is going to have to come out. Isn't that wonderful news? It has completely stopped working, no stones showed up on either scan but when trying to run dye through none ever passed into the gallbladder. My primary doctor main concern right now is if the MS is under control enough for surgery. I said I felt it was today but who knows by the middle of October. My daughters and I have already made plans to go visit my oldest daughter in North Carolina October 10th-14th so I asked the surgery be scheduled after October 17th if at all possible. She said since my gallbladder hasn't worked in possibly over a year (when the pain first started in my upper right side) waiting a couple more weeks won't do anymore damage. I suddenly had bloating, gas, upset stomach and sudden weight gain 2 years ago but the doctor I saw for it diagnosed it as middle age weight gain, turns out all this time it was my gallbladder. Don't you just love doctors? When the pain started I thought it was another weird MS symptom so didn't have it checked out, only reason it was found was something in routine blood work that my doctor picked up on. If it isn't one thing it's another! From what I've heard removing the gallbladder can cause more problems than leaving it there but she says it has to come out.
Hope they are able to tell something about your ears from the MRI. They did an MRI of my ears a couple of years back looking for something specific but don't remember what they were looking for. Strange how one of your eyes can get stuck like that, surely the eye neuro will have seen this before and can give you answers or suggestion on what can be done to correct it. They will probably try to correct it with eye exercises, this is what they tried to do with me when they thought I had a movement disorder. The eye getting stuck is why your balance is so off too. When one eye doesn't work with the other it makes your body feel like it's going in 2 different directions and throws everything off. You have to concentrate so hard on trying to get your body to go where you want it to you can't think of anything else. The off balance thing is the most exhausting of all symptoms, next to testing!
Starting to believe socializing does more harm than good! As I said before my old high school honey is wishy-washy, getting worse all the time. He calls, says things to get my hopes up, then doesn't call back when he says he's going to which really brings me down. My daughter says I need to find some new friends because this one is making me crazy. For a 14 year old she's making a lot of sense!