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Old 05-09-2010, 03:08 PM #1
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Default Is this the same unrelenting flare? I'm I sick - Dr states no

I've been in a flare since 9-09; what is going on? I thought I was out of this last month, as I had no new sx for 4 weeks. But, NO! Vertigo started 9 days ago and I cannot stand it. I was on levaquin 500 when it started and saw my GP ag last week (praying for an ear infection). He sees no infection, but went to 750 levaquin, in case. The only hope I have is I cannot get my right ear to do anything when I hold my nose. It does not pop. Am I sick or is this the same flare or new? The Oct mri showed 1 old brain lesion active. I have read vertigo usually comes from lesions on the brain stem. Any knowledge on how true this is? Are there any pills out to help vertigo? This my 2nd flare since I came out of the 1st one. I had 3-5 days IVSM in each with no help. I've had a total 6 mos out of a flare since I was dxed. Sorry for the pity pot deal and any confusion in post. Not thinking clearly and I have had it!!!!!!!!
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Old 05-09-2010, 04:47 PM #2
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I have never been in remission since I was dx -- if you define remission as a total lack of symptoms. But I do not think I am in a continous flare. I believe this is just damage caused by the lesions. I have taken mezclizine (spelling) for vertigo. It tends to help more with the nausea than the actual sense of vetigo. I do know a few people that have a constant problems with vertigo, and I have also heard that it generally is caused by a lesion on the brain stem. I know that there are also some treatment for those who have dizzines due to inner ear problems.
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Old 05-09-2010, 04:58 PM #3
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Remission doesnt always mean that you go back to the way that you were. I wish it did...I really do wish it meant that things would go back to "normal".

I miss "normal".
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Old 05-09-2010, 07:21 PM #4
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Quote:
Originally Posted by barb02 View Post
I have never been in remission since I was dx -- if you define remission as a total lack of symptoms.
Yes, I well know. I just had hope due to no new sx last month. Look at my words. Trust me I still have many from the prior flair. I think I worded wrong. (Sorry). Untill last month I had new sx tossed on me every month since the begining of this relapse. Last mo I did not so I had hope I was out of it.
I don't have nausea - but almost; it's the round and round stuff and it is not good. I can'tstand it.
Erin524 - I understand this - I am asking if I am still in the last relapse or new one and what to do. Or am I sick??? Sorry.
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Old 05-09-2010, 09:40 PM #5
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Pink, do you think you are allergic to the Tysabri? Cipro and Levaquin sometimes bother people with MS. Just thinking here. Hmm

Try going to an ear, nose and throat doctor (ENT) and have your ears checked. If you hold your nose pinched and just blow, your ears should pop. They pop by themsleves 100+ times a day. When we yawn, eat, drink, etc.

I remember for 3 years having 3 to 4 relapses a year, one would overlap the other. That was a tough time. I did have residual damage left over from each attack. I hope you feel better soon.
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Old 05-09-2010, 09:48 PM #6
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I have read that some antibiotics such as Levaquin can cause some neurological problems for people with neurological conditions like MS.

I know that when I take some antibiotics, I notice a few extra problems with things like vision and numbness.

But, dont stop taking your antibiotic unless your doctor tells you to stop.
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Old 05-10-2010, 06:47 AM #7
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Isn't two years on Ty too long? I thought it was only 'safe' for the first 13 infusions.

Side Effects: Tysabri is not associated with flu-like symptoms or depression (side effects linked to interferon drugs). The side effects associated with Tysabri are:

PML: The most serious (but rarest) risk is PML (progressive multifocal leukoencephalopathy), which can happen in people with weakened immune systems. PML can cause death or severe disability, but is rare – estimated at 1/1,000 patients.
Common Side Effects: These include infusion-site reactions, fatigue, headaches, joint pain.
Severe Allergic Reactions: There have been cases of allergic reactions in about 4% of patients, some requiring treatment (even hospitalization). The symptoms of this include: hives/itching, chills, dizziness, chest pain, flushing, trouble breathing and low blood pressure.
Increased Susceptibility to Infections: People on Tysabri may be more susceptible to infections, and should take measures to avoid them, including good hand washing habits and avoiding people who are sick, when possible.
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Old 05-10-2010, 07:02 AM #8
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I also have a comment. Fluoroquinolone antibiotics are known to cause neuropathy (which the medical community calls "permanent")

We have people coming to the PN forum often following treatments with this family of drugs. Levaquin is one of them.

Here is one article:
http://medicationsense.com/articles/...cs_052205.html

another:
http://en.wikipedia.org/wiki/Levofloxacin

Dr. Cohen has had one patient improve by using IV glutathione therapy. But that is anecdotal only at this time.
Your vertigo may be damage to the nerve -- there are tests for vestibular function to determine that.

Vertigo is very disabling and awful...I've had episodes of that too over the years. Sometimes a virus is at fault, and in my case it was thought to be damage from episodes of childhood abuse. Over the years mine has improved.

There is also a condition called benign positional vertigo, which may respond to head positioning exercises:
http://www.tchain.com/otoneurology/d...bppv/bppv.html

If you cannot pop your eustachian tube I'd go to an ENT and see if it can be visualized with a mirror( my son had that done), to see if you have adenoid tissue blocking it. When fluid builds up in the middle ear from blockage of drainage, it presses on the eardrum and creates dizziness. In my son's case, he had to have his adenoids removed. Another approach is to put a tube in the eardrum to allow the fluid to exit and reduce the pressure.

So there are some things to think about. Personally I'd go the the ENT first, and see if a solution presents itself. If not, then the dreaded, Levaquin effects would need to be considered.

Good luck to you!
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Old 05-10-2010, 08:01 AM #9
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Pink, I'm so sorry to hear you're having a rough time right now and that the 'roids didn't help. ((((HUGS)))

I'm one of those that only had one symptom fully remit. I have some that are constant (like numbness), some that come and go. Some of them are even weather related - both temps and humidity levels.

You've gotten a lot of good advice. Vertigo is never fun, and should never be ignored. The ear not being able to pop makes me also think an ENT visit might be a good idea. I've had ear issues since I was a kid, and not being able to pop the ear can mean too much fluid or wax buildup -or if there's a lot of pain, a blown eardrum.

Hope you feel better soon!
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Old 05-10-2010, 09:00 AM #10
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I am starting to think I've got something going on in my inner ear which cannot be seen. As long as it is not MS, I may have a way out of this mess. The Dr said an ENT could not see anything he could not, but that is my next step, if this does not stop. I see from your reply's that ENTs can do a lot a GP cannot. The good - bad news is now my other ear will not pop - that is why I think inner ear problem.
I'm 100% sure it's not tysabri and about as sure it's not Levaquin. I don't have the most common Levaquin signs. Weakness is a yes, but that is the main sx of this attack and I was not on Levaquin when it started. It also looks like I'm going to be stuck with the weakness in all limbs, if the flare does not end soon. From reading, it seems the sx that do not go away in 1 year from onset are the ones that stay. That has also been my experience.
daisy.girl - thank you, but check out the tysabri thread; we try to keep all tysabri info there.
I'll update everyone when I have more info. Thanks so much for all you help!
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