Newly Diagnosed.... Advise needed :)

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Newly Diagnosed.... Advise needed :)

Postby PrincessLeeya » Mon Apr 23, 2012 4:49 am

Hi All,

Am new here but am glad I found this forum. Will try keep it short....

I am interested re symptom timeframes as was diagnosed Relapsing remitting Jan this year after 8 weeks of worsening symptoms (nothing previous to these). numb tingles began in my feet and quickly took over 90% of my body. I also experienced poor balance, weak legs, wrists and finger tips, twitching in feet and abdomen and severe tingles down spine when looking to floor, fatigue and weak bladder.... After 2 hospital stays over a period of 4 weeks and 2x steroid treatments, most symptoms are gone and symptoms that remain are tingles in hands and very weak hands and legs. Over the past 3 weeks I have also developed a limp, my balance still bad and my left leg fatigues almost to give way after about 2 blocks.

After 3 different specialist opinions and 2 MRI's (MRI shows 3 significant spinal legions and 4 sml in brain) I found a neuro Dr I like and after many tests just last week had my 1st Tysabri infusion. My neuro say this is my first attack and they cant say if I will completely recover. I know each person is different but am just so scared of things getting worse, it is 8 weeks since the last steroids and 1 week since 1st Tysabri, some symptoms are better but my leg now limping. I really cant believe that this has happened and so quickly... I cant imagine continuing to live life like this I am 29 and not yet a Mum :(. I guess I'm hoping to hear some courageous story's that give me some hope of recovery so, am curious to hear how long your symptoms in personal experience took to completely subside after ur attacks or 1st attack. Or if you don't mind sharing regarding recovery.

I am doing a bunch or physio and occupational therapy exercises each day and in addition am taking D3, calcium, Omegas and Magnesium as advised my drs.

Any chat greatly appreciated! Thanks in advance.

Leah xx
Love is all you need.... xx
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Re: Newly Diagnosed.... Advise needed :)

Postby jimmylegs » Mon Apr 23, 2012 6:23 am

hi leeya welcome to TiMS

you will find lots of support and success stories here :)

i did very well, personally, with nutrition. it makes a lot of sense in my case.

glad to hear your docs recommended d3, calcium, magnesium and omegas. mostly omega 3 i hope!

did they order any nutritional bloodwork? if you can get tested it's worthwhile. but don't take the supplements for a week before any tests.

other than that, did they say anything about a multivitamin? or zinc? there are lots of nutritional 'knowns' when it comes to ms. worth knowing whether you have a 'typical' poor nutrition status as an ms patient.

anyway you might get 100% better and you might not, nobody can say - but if they have determined this is your first attack based on their mri evidence and your history, you could have clinically isolated syndrome.

there's lots of info here if you're an avid reader, see what interests you and go for it!
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Re: Newly Diagnosed.... Advise needed :)

Postby dlynn » Mon Apr 23, 2012 10:43 am

Hi PrincessLeeya, Glad you found TIMS.
I first suspected something was very wrong when my vision went suddenly double at age 18. Many tests and years later, at the age of 36,
Iwas diagnosed, I had tingling down my whole right side, (still double vision). Everyone's symptoms are different, mine lasted 2 weeks except the double vision. I chose not to take the DMDs for the first ten yrs., then I started on Copaxone for optic neuritis, but couldn't tolerate it or others I tried. Now I choose not to take any DMDs. I eat healthy, exercise, get a good nights sleep, laughter is my best medicine. God bless!!
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Re: Newly Diagnosed.... Advise needed :)

Postby PrincessLeeya » Fri Apr 27, 2012 2:49 am

Thanks so much for your replies!! I have some spare time tonight so look forward to reading up on regimes and nutrition :)

In relation to my recovery..... Today; 1.5wks after my 1st tysabri, I can feel HALF the palm of my left hand!

Did anyone else have any more input re: my 1st post??

Many thanks xx
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Re: Newly Diagnosed.... Advise needed :)

Postby FLJhawk » Fri Apr 27, 2012 6:06 am

It is very scary when it seems your body is falling apart and there is nothing you can do. My guess is that you will recover from most of the effects over a few months. A few may linger - depends on various things. Of course the bad news is that you will still have MS and another stage could happen again months or years from now.

We never really know if the strong drugs will help or not. You had a strong onset so Tysabri is probably a good thing to be on right now. Some new, less dangerous drugs are in the pipeline and may be out within a year.

I would also suggest you get on a good MS diet and I recommend you read the Nurtition board here for all sorts of recommendations on supplements and diets. Besides what has already been recommended, get on malic acid. That is nearly as important as D3 and zinc, at least some claim.

The main thing is to try to take some control in your life. One thing you can control is your diet and exercise, and a lot of people seem to do well with a good MS diet and without those dangerous drugs.
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Re: Newly Diagnosed.... Advise needed :)

Postby Courtney83 » Fri Jun 15, 2012 10:21 am

Hello Leah!
I just registered with this website today, even though I have been diagnosed for 12 years hahaha. I was looking into the forum to see what it was about, and I saw your post. I know how you are feeling. I was 17 when I was diagnosed, and I had double vision, and couldn't walk straight. Even after my treatments, I still ended up with vision problems. I have been on 3 different medications, and have had many visits with my Drs.
Over the last 12 years I have only had a few relapses. Now I am 29 years old, and I don't let it stop me from ANYTHING! As a matter of fact, I think that it pushes me to do more. I am very active and am always looking for a new adventure. I don't let it ruin anything for me. I believe a great attitude goes a long way. Even now I still have vision problems, and tingling in feet and hands, fatigue, etc., but I think that things could always be worse and I focus on the day.
I don't know if this has been helpful at all. When I read your post I was in tears because I remember feeling how you felt. I remember wondering what was going to happen to me. Now I don't think about what can happen, because you will drive yourself crazy. Just don't let it stop you from doing anything.
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Re: Newly Diagnosed.... Advise needed :)

Postby HarryZ » Sat Jun 16, 2012 6:30 am

Leah,

Welcome to the forum. You will find a lot of useful info here as well as many different opinions. When it comes to MS, no one option works for all.

I don't have MS but my wife did for 36 years before she passed away back in 2007. I've been following MS research for almost 50 years now so have seen a lot during this time.

I'm surprised that your neuro has prescribed Tysabri (or any DMD) so early into the disease. Quite often, the docs will wait and see to what degree you stabilize before starting you on any medication. MS is a relapsing/remitting disease with symptoms that come and go. By giving you a medication before your symptoms settle down, how does anyone know if the natural course of the disease has resulted in how your symptoms now are or whether the medication has anything to do with it. After her first severe attack in 1971, my wife went 20 years without any disease progression and she took nothing (there wasn't anything for MS back then) Had there been a medication available and she used it, then the incorrect assumption that the medication helped her would have been made.

I'm curious to know why your doc rxd Tysabri at this point. Did he give you options as to all the medications available along with their positives and negatives? In most cases, Tysabri isn't given so soon to patients in your situation since other options are explored first.

I know that a thousands thoughts are going through your head as you try and cope with this new situation. Learn as much as you can about the disease and the medication options available. Then make an informed decision as possible for yourself.

Harry
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Re: Newly Diagnosed.... Advise needed :)

Postby jimmylegs » Sat Jun 16, 2012 7:44 pm

search cue: leeya
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Re: Newly Diagnosed.... Advise needed :)

Postby PrincessLeeya » Thu Sep 27, 2012 5:27 am

Hi Harry!!!

I haven't been online for a while and just saw this post...

I had seen 2 Neuros for opinions... Both agreed that I had a severe 1st attack and substantial lesions in my spine. After 2 lots of IV steroids and 4 weeks in hospital + 8 weeks off work my symptoms had only cesed to idle and we were not seeing improvements, my walking affected also... so it was decided that I commence the best avalible treatment on the market at the time 50-70% affective Tysabri. We ( euro and my family) looked at Beta and we decided that 30-40% was not Promising enough and why risk taking something less effective and run risk of more damage. Understand that at the time I was in quite a situation and deteriorating quick... I am not JC+ and my Neuro says my life will be as normal as possible and that there are lots of promising medications in the pipeline, even ones that hope to regenerate damage.

Anyway we will see how it all goes. i just want my life back and to stay alive healthy and as normal as i am now xx
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Re: Newly Diagnosed.... Advise needed :)

Postby HarryZ » Thu Sep 27, 2012 6:42 am

PrincessLeeya wrote:Hi Harry!!!

I haven't been online for a while and just saw this post...

I had seen 2 Neuros for opinions... Both agreed that I had a severe 1st attack and substantial lesions in my spine. After 2 lots of IV steroids and 4 weeks in hospital + 8 weeks off work my symptoms had only cesed to idle and we were not seeing improvements, my walking affected also... so it was decided that I commence the best avalible treatment on the market at the time 50-70% affective Tysabri. We ( euro and my family) looked at Beta and we decided that 30-40% was not Promising enough and why risk taking something less effective and run risk of more damage. Understand that at the time I was in quite a situation and deteriorating quick... I am not JC+ and my Neuro says my life will be as normal as possible and that there are lots of promising medications in the pipeline, even ones that hope to regenerate damage.

Anyway we will see how it all goes. i just want my life back and to stay alive healthy and as normal as i am now xx


Hi Leah,

Certainly wasn't nice to read about your situation. Spinal lesions, unfortunately, are more serious than brain ones. It was discovered that my wife's problems weren't with brain lesions but with several spinal ones.

Hopefully you will recover to a decent level and your MS will leave you alone for a long period of time. Good luck.

Harry
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Re: Newly Diagnosed.... Advise needed :)

Postby vesta » Thu Sep 27, 2012 9:22 am

Hi Leeya:
Diagnosed 1980 : Healing successes, setbacks, solutions
My career as a ballet dancer ended with a Multiple Sclerosis “attack” when I was 32 years old. I was under extreme pressure, and I cracked. It is said that one can have one MS attack and never another. I believe this. Now that we know that MS is in fact a venous blood circulation disorder, I can imagine the stress being so extreme that it literally pushes the blood right back up into the brain and spinal cord, like a pressure cooker. If that one time extreme pressure experience is never repeated, chances are one can recover and never have a repeat.
Dr. Sclafani has observed that 85% of the vein narrowings in M.S. are in fact valve problems. Let’s say that each attack “blows” the valves. Eventually the valves weaken and fail, either causing a total vein obstruction, or an ongoing blood reflux, transforming the relapse/remit MS into progressive MS. Well, that’s an idea.
Anyway, I think it’s unfortunate to launch into drug treatment without considering that MS is a blood circulation disorder (called CCSVI) which can be treated either “naturally” or “medically”. I have developed self help techniques which slow the disease progression (detoxification, optimal nutrition, supplements, self acupressure, any treatment which enhances blood circulation)
In the past two years Dr. Sclafani has perfected techniques for CCSVI endovascular therapies (to release venous blood circulation) using catheterization, venography, and ultravascular ultrasound. drdregen’s work on stem cells may further enhance the viability of these therapies. I myself prefer what I’ll call “natural” to “medical” treatments. (I first heard of liberation therapy 2 years ago. I have found a simple neck massage forcing the blood down towards the heart is enough to stop an “attack” for me.) However, now that I'm older I can feel the blood “stagnating” in the neck every morning and even though self acupressure or swimming gets the flow going, I know some CNS system damage is occurring and the damage accumulates. (If I get stressed, I can stop the blood reflux, but again any reflux means some damage.) If I had known of the CCSVI theory 20 years ago I wouldn’t need a cane to walk today.
I'm alot older than you so will stick with the therapies I've developed (with lots of trial and error, success and setbacks) over the past 32 years. But now that we begin to know what the real problem is, you have every chance of recovery/disease control.
On Thisisms.com check out Dr. Sclafani’s thread, drdregen, CCSVI.
My own work can be found at MS Cure Enigmas.net, especially Main Page and under blog Acupuncture-Acupressure
Wishing you the best
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Re: Newly Diagnosed.... Advise needed :)

Postby HarryZ » Thu Sep 27, 2012 12:02 pm

Now that we know that MS is in fact a venous blood circulation disorder


Those who know me on this forum are aware that I am not a supporter of the MS auto-immune disease theory. But at the same time, to make a statement that "MS is in fact a venous blood circulation disorder" is just not right. While there has been some evidence of this and several people have obtained excellent results with the CCSVI procedure, we just don't know if the circulatory problem is the result of or cause of MS. And it will take a lot of research to determine this.

We know that some MS patients have had the CCSVI procedure done and nothing has changed. Others have a whole new life. Perplexing...just like the disease itself.

Harry
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