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2 things... please post! :/

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Old 07-21-2005, 05:11 PM   #1
Join Date: Jan 2005
Posts: 382
curious11 HB User
2 things... please post! :/

Ok so #1... for everyone here who is taking medication for MS... does the medication help the exacerbations? Or is it a prevention method?

#2... I have my evoked potentials test tomorrow and a meeting with my neuro. What should I do? I went in there 6 weeks ago with weakness in my left leg... I now have what is thought to be optic neuritis in my left eye... numbness in 3 of my finger tips... and today I woke up with my left leg from the knee down numb/ "asleep". This is getting progressively worse... nothing has gotten better. And with clean MRIs I dont want to be seen in 6 more weeks... what is going to happen to me next? I am 20 years old and am literally falling apart. What are the odds that all of these things are just coincidence?? I highly doubt it! I am convinced I have MS! It seems like every week I have a new symptom and its very scary for me. How do I get it across to my doctor that I cant afford to wait around for tests and 6 week check ups? I will do whatever it takes to get some kind of answers and treatment. I just got back from a 4 day vacation to sesame place in PA with my 3 year old. I had to push the stroller and use that as a walking aid in between my stopping to rest my "bad leg". This is getting out of hand and something needs to be done. What should I say/ suggest to my neuro tomorrow? I need answers before this gets worse

and another thing... when I am sitting up and put my chin to chest... it sends a shock down my legs... ??

Last edited by curious11; 07-21-2005 at 05:19 PM.

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Old 07-21-2005, 06:39 PM   #2
Join Date: Apr 2005
Location: TX
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ErinS64 HB User
Re: 2 things... please post! :/

I am sorry you are having such a hard time. There are many of us in the same boat with what appear to be very definate MS symptoms yet no diagnosis. I have been on my ride since last summer and have had an attack every 2 months. A total of 4 bouts of ON 3 in my left and 1 in my right not to mention not being able to walk on several occasions. The fact is that the only way you will be diagnosed is if it is confirmed by tests. Either MRI or LP. If you have already had a clear MRI they probably wont even do another one for atleast 3 months. I have had 3 so far..still no definate sign of MS. I am scheduled for an LP in August. I am getting IVIG therapy but this is only because of 3 confirmed ON recurrences. The fact is I am slowly going blind in my left eye. I began last year seeing 20/20 in both eyes. I have recovered from my ON but had my eyes checked last week and I am only now able to see 20/100 in my left and 20/30 in my right. This is the only reason why I am getting the meds that I am. That and the fact that I have already had the IV steroids and while they got me out of the attack quicker it had no result in stopping the recurrence.

It is a very frustrating process. All I can suggest is that you hang in there. Believe me I understand. My legs go numb and I cant walk about every 2 months and have since October of last year. I am also a mother of 5 Very active children. I also work full time. I dont have time for this either but unfortunately it insists that we take time.

Good luck

Old 07-21-2005, 08:49 PM   #3
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Join Date: May 2005
Location: Indiana
Posts: 667
KelliD HB User
Re: 2 things... please post! :/

Curious....ALL of your symptoms are indicative of MS. This does not MEAN you have MS. I don't want to diagnose you over the internet..that is irresponsible and I am not qualified. sister and I both have MS and your symptoms are all too familiar.

First, you asked about MS meds: they are designed to increase the time between relapses and disability. They do not touch the symptoms. With MS, all you CAN do is try other meds to treat the symptoms as there is no "cure." Some options may include short-term steroids, anti-depressants for pain, anti-inflammatories, etc.

Second, make it clear to your doctor that you want a diagnosis and treatment as soon as is humanly possible. Do know that diagnosing MS is done by process of elimination and this is why it takes so long. MS mimics so many other things that the neuro's must rule out the other possibilities while determining whether test results point toward MS.

If you are not happy with your neuro's answers, seek a second opinion immediately. Some are more thorough than others, some listen better than others. It is YOUR body...YOU are the OWNER and THEY need to listen to YOU as part of your testing, diagnosis and treatment.

While on the roadto diagnosis, if the doc suggests even probably MS, I recommend doing as much research on it as you can. Knowledge equals empowerment and what you learn will help calm your fears.

If you feel up to it after your tests and neuro visit, hop back on this board and let us know it went..okay? Hop on anyway and let us encourage you on your journey. You can ask us anything!

Old 07-22-2005, 06:42 AM   #4
Join Date: Jan 2005
Posts: 382
curious11 HB User
Re: 2 things... please post! :/

thanks for the posts... I am going to my appt. in alittle while and wanted to check on here for advice to my post. I appreciate the encouragement. I know alot about MS because my brother has it. He was diagnosed at 17 and is now 26. He is doing great. If todays appt. doesnt go as well as I would like, I will be seeking a second opinion from my brothers neurologist.

wish me luck

Old 07-22-2005, 06:26 PM   #5
Join Date: Jan 2005
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curious11 HB User
Re: 2 things... please post! :/

Ok so... I met with the neuro. I sat down and he pretty much acted like there was no reason for me to be there and that my leg weakness wasnt a big deal. He started out by saying... "so we checked you for MS and you dont have it." I then said "well I dont believe that to be true" I let him give his speech and then I told him the new symptoms I have. Leg numbness, a few numb finger tips, loss of vision in my left eye, and the tingling sensation that runs down my back and legs when I look down. All he had to say was "well thats interesting." I swear if I heard that phrase from him one more time I could have screamed. He did some standard evaluation of relexes etc. He mentioned again how brisk my reflexes are. I informed him that I have leg spazams when I sit for any length of time and then get up. My muscles kind of go crazy and I have to wait to get up until they relax themselves. He also said that I have chronis(?sp) something that happens when he pushed up on the bottom of my foot/ankle and my foot would move up and down rapidly. Anyone know what im talking about? This was only in my left leg (bad leg). This he also said was very interesting! He mentioned sending me for repeat MRIs incase there was a subtle lesion that was missed, then he decided not to. He also mentioned a possible peripheral nerve disease, then ruled that out due to my overly brisk reflexes, not lack there of. He ended up deciding that I see the MS specialist in the office. So I go Aug 4th to meet with her. But basically what he said was they cant treat me or diagnose me with clean MRIs. So I guess I will play the waiting game again. He is INTERESTED to see what my visual fields test and neuro opthamologist has to say on whether this is ON or not. So we'll see. I think I will go to my eye doc. appts next week and see what they say. Then decide if I need to go to a new neuro and get a second opinion. I just feel like whatever this is is affecting almost every part of my body at the moment and I cant imagine it getting worse. Im scared that it can and will and I want to find answers fast... as impossible as that seems!

Old 07-25-2005, 04:58 AM   #6
kimber lee
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Join Date: Jan 2005
Location: s.f.valley, ca
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kimber lee HB User
Re: 2 things... please post! :/

get another doctor, take care, kimber lee

Old 07-25-2005, 05:45 AM   #7
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Join Date: Jul 2005
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vlynncurtis HB User
Re: 2 things... please post! :/

You may want to consider changing to your brother's neuro anyway. I don't think I would have confidence in yours after what you've said. Elimination is a way of diagnosising. Even though I had lesions, new and old, show on my MRI 6 years ago and received a probable MS diagnosis, I still had to have other tests to eliminate could have beens. I began treatment, IV drip and Avonex immediately after MRI, while the other tests were being conducted to eliminate other possible diagnosises.

Good luck


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