Drugs for MS. Questions and concerns

A board to discuss future MS therapies in early stage (Phase I or II) trials.

Drugs for MS. Questions and concerns

Postby RazzoSox21 » Sat Apr 30, 2011 1:36 pm

Hello everyone, I am new on this board as I was just diagnosed with MS about two weeks ago. Just a bit of background so people can understand where I am coming from. I am a 25 year old male, I was an athlete as my profession which obviously is not going that well considering this diagnosis. I had a multitude of symptoms leading up to the diagnosis of MS. At first I had extreme lower back pain, left leg numbness, blurred vision, urinary incontinence that progressed to voiding and retention. So after seeing the orthopedic surgeon (whom I had three knee surgeries with prior to this) ordered an MRI and saw central spinal canal stenosis but not enough to be causing the amount of symptoms that I was having. He then sent me off to a neurologist who did all the testing possible EEGMT, Lumbar Puncture, MRI of brain and spinal canal. And he said that these symptoms were all caused by possible nerve damage from my profession and previous serious injuries. So after 5 trips to the ER, ONE doctor there made the suggestion that it might be MS. So finally after going to a very reputable Neurologist at UCLA medical center in Los Angeles, CA they made the diagnosis. They then have me on Neurotin, Prendsione,Soma and an SSRI for pain that I have. I am going back to the Neuro on monday to "get a better drug schedule for me" . I am very sorry for the long complicated story I just wanted to know those with urinary problems and huge amounts of pain in their legs and buttocks, what did the doctors do for you? The team that I was previously employed with had sent me to a pain managment doctor and wanted to prescribe me Oxycontin!! I looked at him thinking "how much of this sh** are you taking???" Just struck me as so odd that doctors are just wiling to throw out such strong medications! So my base questions are : what are the best medicines for neuropathic pain, urinary problems, and massive bouts of leg pain and tingling (nothing opiate based) a team mate I played with in college passed on from taking opiate based pain killer for EVERYTHING!! Any help would be greatly appreciated. Good luck and god bless to all of those that are fighting and controlling this disease. May god be with all .

RS
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Postby Drury » Mon May 02, 2011 8:56 pm

RazzoSox21,

So sorry to hear of your recent diagnosis and all that you are going through.

I just wanted to reach out and say that my daughter went through similar agonizing pain and was hospitalized. They also had her on Neurontin, steroids, morphine, etc. and she continued on the neurontin and acyclovar as her neuro thought she might have had some shingles/herpes type flareup. I think you must discuss your concerns with your neuro to see what alternatives can be given. My experience has been that doctors and hospitals have no qualms about dishing out very heavy drugs and I am extremely concerned at the lack of monitoring. In my daughter's case her neuro forgot to tell her to start out on a low dose, several times a day of another neuropathic pain med and actually prescribed a high dose which she took and then got angry at her for taking it! It was months before she started to feel normal again - too high doses can cause seizures.

I really hope you get some relief and do research this website as there is a huge amount of info that can help you. It has been invaluable to me since my daughter's diagnosis in Jan 07.

Drury
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Re: Drugs for MS. Questions and concerns

Postby suestory56 » Tue Mar 06, 2012 6:46 am

Was on betaseron, not on any drugs any more. Hate taking any drugs! Not sure that Betaseron helped at all and it felt like it was making me worse. Have not seen any changes in my disease since I stopped taking Betaseron. Still have to use a walker when walking or a scooter for long distances and am still visually impaired but nothing has changed for years.
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