Spacticity and quinine

[young at heart]

I have been diagnosed with Multiple Sclerosis.Progressive.I suffer from chronic spacticity and muscle spasms.I take zanaflex,baclofen and quinine.My neuro had upped the quinine to 325 mg 3 times a day.It resulted in a trip to the ER.The quinine caused the vision in my left eye to diminish,severe tinnitis , dissiness and vertigo.I didn't have any of these symptoms until they increased the quinine.Now I'm being told the damage to my ears can be permanant and the same with the vision in the left eye.Are they correct?
I had been prescribed quinine 325mg at night and it was working fine for 4 months.Could this just be a flair up from the MS,Its been a week now and I still have the same symptoms I had from the quinine,the loss of balance to the right is really bad,many frequent falls when I raise my right leg.My local neuro is saying it willl pass.Any insight would be helpful.

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   The symptoms you describe may be due to the quinine toxicity or possibly due to your MS.  Quinine toxicity can cause dizziness, ringing in the ears (tinnitus), blurred vision and vertigo.  These effects do generally get better when the drug is removed, but the retinal toxicity can be permanent.  You should see a ophthamologist to see if there is any sign of optic neuritis (which can occur in MS) or other changes that may be reversable. I would also recommend an MRI with contrast to evaluate for acute MS exacerbation.  MS can also cause similar symptoms and would getter with IV steroids.

I hope this has been helpful

[zzzzzzzzzz]

I'm so sorry to hear this has happened to you and do hope there is no perminant effect. Its so difficult isn't it to work out what is caused by drugs as opposed to the course of the illness - I am struggling with this myself right now. I have been wanting to talk to you - Maybe this is not a good time, but if you're up to it, I would appreciate your comment. I am currently under investigation for MS - have been for a year. Alot of the classic symptoms and yet MRIs are clear - initially I was told clear MRI - no MS. Then I saw a Neuro and he kind of said the same, then ordered a new MRI after a strange episode with my eyes - couldn't move them without agony & couldn't sleep for 24 hrs as they would hurt more if I closed them - I couldn't stop them going cross-eyed. Unfortunately I live in NZ - here we have a free hospital system, so most don't have insurance, and you have to wait 4-5 weeks for an urgent MRI unless you're dying. I have been better (not entirely, but symptoms less pronounsed) when the MRIs have been done, and I have wondered what they would have found if they could have done it earlier. Last year, a physician diagnosed interneuclear ophthalmoplegia - said he could see it with his ophthalmoscope, and then MRI done 4 weeks later was clear and he said he must have been wrong. I've had double vision ever since & wear a prism. This is just the eye problem - I also have alot of other symptems, but the eyes bother me the most as I'm an artist. Saw my Neuro last week and he said there is nothing more he can do for me until I develop new symptoms. I assume he means another bad attack - then he can hospitalise me and do tests straight away.
Don't want to give you too much to read, but I am curious about your situation as I seem to recal you saying you have had clear MRIs and obviously had to go to alot of trouble to get diagnosed. How long did it take? Do you have isolated attacks? or does it progress slowly? I hope you don't mind the questions - I'm really struggling after the neuro last week and so tired of no diagnosis - I've managed to stay possitive up til now, but I'm finding it hard to keep it up. Hope you're feeling better.

[malden]

hi zzzzzzzz. sorry to hear of your problems but i wanted to respond to your posting as I feel a lot of us are in similar positions. check out this website for info on BINO/INO http://www.revoptom.com/HANDBOOK/sect6h.htm  From what I understand if you have this condition and it is caused by MS you should have a lesion in the MLF region in the brain. As nothing is showing on your MRI perhaps your neuro/GP should be looking in other directions. A condition like Chiari malformation could give you BINO without lesions typical of MS. It just seems that if your condition is ongoing and it is caused by MS, lesions should be present. I am no doctor but I have researched BINO quite a bit lately as I feel I may have it (I have no double vision in primary gaze but I have problems tracking moving objects and my visual acuity remains 20/20).I think maybe you should see a neuro opthalmologist so that they can identify the exact problems with your eyes.Sometimes they (neuro opthalmologist) are more adept than neuro's at ruling in/out MS  when the eyes are affected. The other thing you should insist on the next time you see your neuro is a VEP -visual evoked potentials. If you really have BINO caused by MS your VEP should be delayed and hence abnormal. If your VEP is normal it then means that lesions are not causing slowed nerve conduction and your answer is probably not MS. What are your other symptoms at the moment? Do they come and go or are they constant? Do you have problems with movement and/or balance. Do you have pain in your legs,arms or back? any sensory symptoms? any cognitive problems? How many years exactly have you been dealing with this? Sorry for all the question but in my search for an answer I always try to brainstorm with people in similar position.

[zzzzzzzzzz]

Hello lovely Malden. So good to hear from you! I've been wondering how you are. Have'nt seen you on this site for a while. Whats happening with you? Can't remember where you were at last time - think you had a diagnosis of CFS? from neuro? Sorry if thats wrong - read so much on this site. How are you doing? Are you working? What do you do for a living - hope its something you can manage while unwell, I am so lucky with my work - thank god its flexible as I just don't know what I'd do without it. That said, its been getting alot harder lately - I have been struggling with muscle pain, stiffness & weakness in my arms for some time - probably the most difficult symptom to deel with. But in the last couple of weeks its spread to my hands and this is affecting my ability to use a paintbrush. My legs are OK - they started behaving themselves when everything calmed down after last christmas. At that stage, all I had left was left toes that buzzed 24/7, also moved involuntarily and hurt periodicaly, and still eyes that needed the prism lense. Flt alot better for a few months - not great, but better. Then I seemed to go downhill since. Its strange - I haven't had any of this tingling & electric-shock sensations I had during the attack last year - (that is until last night - my left thumb started tingling and today left ankle - this is how it all started last year, so we'll see what progresses I guess) I've mainly had the muscle spasms, Virtigo and the eyes getting worse.
I'm waiting for an appointment with an Orthoptist - (specialises in eye misalignment etc) I asked to see an Ophthalmologist, but for some reason the neuro thought Orthoptist would be better. Went to the Optomotrist the other day to see why eyes hurt so much - thought maybe didn't need prism anymore and this was causing strain. He said no - eyes are worse - need stronger prism - 4 diopters which is pretty strong. Can't read or even watch Tv sometimes, or I'll trigger them to spasm and get a hell migraine the next day. Even the Optomotrist exam caused severe pain for days after.
I would love to get an EVP, but the system does'nt allow Neuro to go ahead and do it - he has to have me in hospital during acute attack before he can do extra tests. I have to admit to being kind of glad when the tingling started last night - I know it sounds crazy, but I couldn't help thinking 'heres my chance'. I seriously wouldn't mind going through another attack provided it got me a sure diagnosis and if I had the wonderful symptom of no pain like I did last time - I honestly felt no pain for 3 months - just other sensations - then when it went, I got burning pain in my spine which spread to my arms. I have had no pain today and yesterday.
Neuro has me on Neurontin, which has taken away the head pressure and virtigo, but hasn't really done anything else that I've noticed, Still - great to have a clear head - had forgotten what that was like. He also has me on Imigran - which helps with the migraines and also with the arm pain, but can't take it too often unfortunately - really need something else, but again, Neuro wants to wait.
This is getting very long. Better get off and give arms a rest - I always find I overdo things when I don't have the pain to tell me to stop, and then I pay for it - I'm sure you find the same.
Please write back and tell me whats happened for you - have you had any further tests yourself? Thanks for the web adress - I looked up & realised I'd already read. I know the episode I had where eyes went crosseyed is usually a result of BINO - posted on the eyecare site - gave all the details and eye doctor said he did'nt know what else it could be.
Must go - talk later.

[zzzzzzzzzz]

Forgot to mention - looked into the chiari malformation thing some time ago - looks like it should have shown up on the MRIs - so doubt its that. Neuro still thinks MS - and the way the system goes, he has to rule that out before he can look at other possibilities. Have you read up on Primary progressive? Thats what young at heart was dx with - apparently less likely to show on MRIs initially. Lesions can be too small to show and can heal up without scarring.

[malden]

hi zzzzzzz how are you hope you are fine? Sorry its taken a while to reply but I have been busy with work (I went back to work after encouraging words from people like you. You told me "to get my *** out of bed" thanks I really needed that at the time). Anyway yes I have read about primary progressive MS and it is a consideration for me but several doctors don't agree (what do they know anyway). My main symptoms are muscle aches in my calfs, back and forearm. I get migraines frequently and I feel that my memory is not what it was but my partner disagrees she says I am fine in that respect. I have a hard time focusing on moving objects but I have no double vision and visual acuity is normal. My right hand aches badly after I wake up and I get arthritic type of pain in legs and arms. All these symptoms are constant to varying degrees throughout the day. I had a period of feeling dizzy with no nausea and no room spinning sensation. The dizziness was most noticable when I get up quickly from lying down.The dizziness went away. I also had constipation for about 3 months after my condition started but this went away as well.Blood test in March showed elevated CK (muscle enzyme) and I understand that this is normal in MS (this is what I have read but I may be wrong).The blood test also show eosinophilia and neutropenia (white blood cell irregularity) indicating bacterial infection. I had a CT scan which was normal. I am going to see a neuro in November and i will keep you updated.In your case PPMS does not seem correct since you mentioned that you get attacks. When you say an MRI did not show a Chiari did you mean an MRI of the cervical spine? An MRI of your brain would miss a Chiari.Have you ever been treated with steroids when you've had attacks? If yes did your symptoms lessen? Have they ruled out neuromuscular conditions for you? did you ever have a blood test for hughes syndrome (APS)?  Anyway I'll talk to you soon. Keep well.

[zzzzzzzzzz]

Hi Malden - thanks for getting back. I'm doing OK - its the school holidays over here so I'm taking 2 weeks off work to be a mum and give my eyes a rest - its helping already - I seem to find that certain things (mostly work) seem to trip my eyes to spasm and this appears to trigger other things as well. Still waiting to see the eye speciallist.
Reading your symptoms, I have to to wonder about a chiari malformation - especially as you mentioned you calf pain, which my osteopath mentioned is an indicator. You say you don't have double vision - have you had your eye alignment checked out? I thought I didn't have it initially, things just seemed blurry - didn't understand that to be double vision until the optometrist actually measured the alignment. My eyes also don't move together which causes problems tracking moving objects - its hard watching any film or tv program where they use those trendy camera techniques that move around all the time - makes me feel sick.
Are you taking meds? What do you take for migraines? I take Imigran (Imitrex)- have injections on hand for when its really bad - neuro is the only one who could prescribe those - they've made a huge difference to my ability to have some control over things - sometimes it doesn't work, but mostly it helps alot. Only downside is I can't take them too often and there are times when I could do with them every day.
Sounds like you're pretty much in the same boat as me with pain - its worse for me in the morning - I wake up very stiff and it seems to improve a great deal at night, which makes me very reluctant to go to bed.
I don't think I have had very extensive blood work done - I have'nt seen results - just get told everything normal range except for ESR which was elevated - no idea how much. I'm careful about how many questions I ask my doc or she'll start giving me suspicious looks (is this patient a hypocondriac?) and lecturing me about too much internet again. The neuro is more supportive of my doing research, but theres never enopugh time to ask much.
Have you not had an MRI yet? - honestly - your NHS system sounds alot worse than ours! Oh yeah -I had Cervical spine MRI as well as brain the first time - (they went down to the lower thorasic - found a hemangiaoma (benign tumor) in the mid thorasic vertibrae  - I'm told this should not cause symptoms, but it is where I get most back pain.) No Chiari found and I don't know if they did only brain second time or not. - just told normal.
I hate that word 'normal' I feel far from normal.
I don't know about the PPMS thing - thats why I wanted to talk to young at heart, as I read in one of her posts that she kind of has 'attacks' where things get worse for a while. I seem to read so much conflicting info on it - its described differently depending on where you look - still, neuro still has his suspicions and theres not alot I can do except follow him - I'd have to travel a long way and pay alot of money to see a different one.
No I have not been treated with steroids, which frustrates me a great deal - you don't get that kind of treatment until you're diagnosed here. As for neuromuscular conditions, while he suspects MS, hes not spending any time ruling other things out - anyway - he says my symptoms don't fit the usual patterns for other neurological diseases. I don't know about hughes syndrome - I'll have to look it up - no idea if I've been tested.
Well, I'd better go sleep. I'm off to the gym tomorrow - a very brave move on my part - I'm being helped by a physiotherapist who works with MS clients - Shes got me lifting the lowest possible weights on everything - I know its a really good move and much as it hurts, it will help in the long run, but its such an ego fall - I used to work out at the same gym on the same equipment every day and I took great pleasure in showing off my superior abilities. Must be karma eh  :-)
Take care, hope to talk again soon.

[babydave]

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