Montel on Oprah
 

Anybody else watch Oprah today? And see how very similar MS and RSD are? The way Montel was talking I felt like I was up there describing how I felt with RSD. does anybody know if there's any kind of link between the two diseases?

I watched it Andrea, and I too thought it could be me sitting up there. He nailed some of the things we deal with, and he also let the emotions just flow out.

It was very difficult for me to watch this. Some of the pains he was describing were identical to what I experience everyday. One thing he said had me thinking maybe I have ms lol.

When he talked about going into the casino when it was 114 degrees outside. What he described is exactly what the heat does to me, and I thought it was just me...I guess not.

Very good show today.

I too watched it and felt much like both of you... they could have been decribing me...

If I recall... there have been a couple or maybe more than a few, but I do recall at least one of our RSD family that has also been diagnosed with MS after having RSD for a while.

I'd like to know if RSD and MS walk on the same path...


I'd like to know if I might have or do also have MS....but then again... maybe I don't.... kwim?!?!


:confused:
Abbie

Ditto
 

I said the same thing to myself."That could be me". My brother called and ask if I was watching and said the same thing"that sounds like you sis". I think is incredible how similar sounding the symptoms were. I too wonder, I am from Colorado and I've been told they have a high rate of MS. I have never been tested for it. Good question Andrea.
Hugs Di

I hope I'm not intruding... but Abbie, have you ever spoken to your doctor this? I know that a brain MRI is a bit drastic if it isn't indicated, but if you were to dicuss your concerns with your doctor, maybe he/she might order one, even if only to eliminate MS from your worries.

Thinking of you and hoping that you feel better soon. :hug:

I didn't see the Show unfortunately as they don't seem to have it over here in the UK ... I really wish they did as from what I have heard, it is really good and worth watching!!!

My nanan (mums mum) had Progressive MS and a LOT of the symptoms she had, I have or have had also. Her legs used to give out a lot and so do mine, she was was very sensitive to temperature changes and so am I etc etc. I have read posts on the MS forum also and can so relate to what some people are describing.

My Doctor never did a brain MRI or Lumbar Puncture when I was diagnosed and my mum has asked him many times about MS and he always tells us to stop panicing and that isn't what I have and that my mum should stop "scaring" me into believing that I have it!!! She never does that to me but it has always been in the back of my mind about the possibility of MS - especially seeing as there is a family history of it.

I read somewhere on the internet once that MS and RSD are the two Neurological conditions that are VERY similar and that they are in the same "branch" together. It said that MS and RSD are thought to be very similar conditions, just with different names. I really wish I could find the article as it was really interesting but I can't at the moment - i'll have a look though and see if I can find it anywhere.

I have also read that some people with RSD are also being diagnosed with MS. Lindkaye has posted on the MS forum saying that she has just being diagnosed and some of my friends from other forums are currently undergoing testing for MS. I sometimes with that my doctor would test me - I KNOW it is risky to have that testing but I think it would probably put mine and my mums mind at rest. They wont do tests over here in the UK though unless they feel they absolutely have to so I don't think my doctor would do one.

Thanks for posting this, it is really interesting!

Testing for MS is actually quite difficult, its more a diagnosis of elimination in some respects, MRI is more likely to show evidence of MS after 2 suspected acute attacks with at least a 3 month interval I think (sorry going by memory as my notes are too far to reach lol) I think the Lumbar puncture is only worth doing in one strain of MS?

It would be interesting Ali your Dr actually ordering a brain MRI just to see, not saying you have MS but just because of the ataxic type gait you had.

I am working in an MS community clinic at the moment and our clinical educator was telling us of the 3 'hidden' symptoms of MS being neuropathic pain, fatigue and cognitive issues, after a week and then me having a bad day I took her aside and said I suffer from the same 3 hidden symptoms but dont have MS. I think it makes me really able to remember to watch out for how my patients are feeling and not push them too hard or do things too fast for them, I really feel like I have this extra connection to them.

I dont know about any proven relationship but then MS is not really known what causes it either, they have hypotheses but nothing that is positive. Maybe one day they will find out that they really are quite similar in nature except that MS has positive findings on MRI most of the time whereas so far there is not a diagnositic test for RSD.

Take care everybody!

We couldn't watch the show but I managed to read up about it on the Ophra website and I too thought that I was sat up on the stage talking about my RSD! Everything that they talked about sounded exactly like what I was experiencing!

I mentioned it to my mum and she looked at the website and thought the same thing. It really makes me wonder if there is a link between RSD and MS as everything sounds so familiar and sometimes I think that I have been mis-diagnosed ... I know I probably haven't but everything just sounds SO familiar!

My nanan had Progressive MS and she dealt with a lot of the same symptoms that I have also. I think it scares my mum and grandad that I have some of the same symptoms and it does me sometimes. We have mentioned it to my Pain Management Doctor before and he just says that I don't have MS and that my mum should stop "scaring" me, even though she isn't! My Doctor gets very frustrated if we talk about MS or any other similar diseases.

When I was diagnosed with RSD, my Doctor never did an MRI of the Brain. The only tests I had were X-Rays, MRI of the foot and blood tests and my doctor said that based on all of those tests, I definitely had RSD. I think MS is still at the back of my mind though, just based on the fact that I have some of the symptoms and there is a family history of it also.

My mum looked on the internet and you can get a private brain MRI done near us for £200. My Doctor refuses to do one on the NHS so that is the only way we would be able to get one. Mum said she was going to see how I went for the next few months and then if things don't start improving, she might consider getting the MRI done just to rule everything else out. I know it would probably come back clear but I think it would maybe just put our minds at rest at least.

I hope everyone is OK!

Ali,

Do you mind if I PM you some articles?

I do know some of the symptoms are similar. It does make you think. I did not see the Oprah show but have it DVR'd. It's interesting because my sister has MS. It makes you wonder about genetics and how this could apply. Hope everyone has a good day! My husband and I went to a PTA dinner last night and I won a Garden Gift Basket. My 6year old daughter and I have been getting ready for spring so my sons are digging the garden now! Linda

Dear Ali,

If I was your mum I would fight for a SPECT scan of the brain instead. Hang in their in the mean time.

*edit* I care about you.:)

Their is something in my heart that says you are going to get thru this.

When you do, I 100% know you will help people.

Thanks Buckwheat!

I haven't heard of the SPECT Scan before but will get my mum to do some research into it later.

I doubt my Pain Management Doctor will do the tests on the brain - we have asked him before and he gets really angry and frustrated at us and tells my mum to stop "scaring" me!

I think we would probably have to get the test done privately as the NHS might not cover it but I think it would probably be worth it, just to put our minds at rest. It's probably not MS but there is still that nagging thought at the back of my mind thinking "What up if it is and time is going by without any proper treatment".

Thanks again and i'll keep you all posted on what decision we make.

Dear Ali,

A Pain Mgt. MD is not allowed to DX?

We've only really spoken to my Pain Management Doctor and Physical Therapists about the possibility of having MS as they are usually the doctors that treat my RSD. We only usually see my GP and MD if I have any "other" problems other than the RSD as they don't understand RSD really and haven't got a clue how to treat it. It might be worthwhile speaking to my GP about it though just to see if she could do anything. I doubt they will do the tests as they only seem to do them over here if they think they are absolutely neccasary and you haven't been diagnosed with any orher pre-exsisting condition. It's so frustrating at times as even though we have asked them to do the tests for MS, they say they cant do them and my PM just gets very frustrated with us.

I have seen a Neurologist before but that was because of the myoclonic spasms and dystonia's I was getting in my RSD leg. The neurologist asked if we had a family history of Neurological illnesses as they are doing a research study into it and my mum told them that her mum had Progressive MS and my uncle had Parkisons Disease. He wrote it all down and said that it was interesting but never really went into any other diseases. I'm not sure when I see him again but it might be worthwhile speaking to them.

I see my PTs on Tuesday about the possible spread to my left arm so my mum said she would talk to them then and see if they have ever considered any other possibilties. I don't think i'd be as worried if I didn't have some of the symptoms of MS and also the fact that my nanan suffered from it also - I guess that the RSD can "mimic" othe conditions though but I still think we would like it if someone could put our minds at rest.

Thanks again for your help and suggestions.

just quoting the original post so we keep this discussion on topic

thanks

Hey Ali...

You can read the text of Montel's interview here:
http://www.oprah.com/article/oprahsh...el-williams-ms

I looked on YouTube and it is not there. I guess Oprah hasn't
released it yet.

The pain he describes sure seems similar to RSD and also PN!
I am sorry I missed that show, too.

Very interesting.
 

A lot of his symptoms seem to be the same as RSD.

I was wondering about the heat. He says heat bothers him the most as it does me. With RSD doesn't it seem the cold is worse?

His interview was very good. He was thorough.

Diana, My caregiver told me that Colorado does have the highest rate of MS.

Ada

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I have always thought RSD and MS were related. I was having MRI's every 6 months for 3 years prior to my injury, which ultimately lead to my RSD. The MRI's never showed leisons so I was not officially dx'd with MS and then I just stopped going because my symptoms cleared up for about a year and then RSD!! I even asked my Orthopedic Surgeon, my PM dr, and my regular Dr if they were possibly related but all of them said they never heard they were and didn't think so. But then these are the same Dr's that don't know much about RSD to begin with!!

Having had RSD for so long, I've met many with both RSD, and MS. My Neurologist specializes in both. I think that they have similarities, but are very different.
For instance, I've never heard of MS being induced by a trauma.

It may be like comparing a migraine with a tension headache.
Both effect the head and cause pain, but they're different, and so are the treatments.

So it goes with RSD and MS. In my humble little opinion, anyway.

Be well,

ASB