Optic Neuritis - now my leg is numb - worried - please help?

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Optic Neuritis - now my leg is numb - worried - please help?

Postby Davcos » Sun Feb 17, 2013 3:44 am

Hello all,

Firstly thank you for starting to read this and hopefully you'll get to the end and be able to help :)

About May last year my vision went a bit faint in my right eye, various checks and MRi and they said I have Optic Neuritis, wasnt bad enough for steroids and sure enough it went away about November time. It has now come back in my left eye but no where near as bad as last time and I dont get the feeling or pressure either. I am taking 2 1000 unit Vitamin D tablets a day in the hope that helps as the consultant advised.

Now, and this the part making my heart miss beats, about a month ago I felt a numbness on and off in my left upper thigh on the outside. When I saw the consultant she said that part is very sensitive especially if you have gained weight, id say ive gaine a stone or maybe two tops so put it down to this after doing many checking with sharp things and push up push down etc... it went away and then this week come back but worse. It feels like my finger knows im touching it but my leg is not sure. I did have something similar in my lower leg about a year ago and it was because I had put my back out and after a couple of trips to the Osteopath it went away. I have been doing work on the house again, bending about, lifting and stretching so on Friday I went to the Osteopath again sure enough my back was out, in fact he cracked it in 6 places, ouch! and I believe my leg feels betterrrrr but not right, I must say he did said if it wasnt better but Monday or Tuesday then to go back and yes I am probably being impatient. However the reason for this is my Dad has MS and he had the eye thing thirty years ago, nothing, then his right knee and leg started causing problems and i know all the symptoms he has talked about.

Last night I went to bed and I would say only 1/5 of the affected area is still numb or should I say very very sensitive, the ostepath mentioned it could be swollen. My main concern is i woke in the night and it felt like my whole upper outter thigh was on fire :( and almost moving or crawing feeling :( and I know this is pretty much what my Dad has described before, im not sure if I imagined or dreamt this but I thought I could feel it in my hips and possibly other knee which is what is weird and really worrying me :(

Can anyone tell me if this sounds like a next stage sympton or if maybe it really is just connected to my back being out? Which is what I am hoping just like last time.

Many thanks to anyone taking the time to read this and any input much appreciated.

Davcos
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Re: Optic Neuritis - now my leg is numb - worried - please h

Postby LR1234 » Sun Feb 17, 2013 10:07 am

Hi Dave,
Sorry to hear you are experiencing these symptoms.
I am afraid to say I have had both of those, Optic neuritis and a numb thigh (My sensation has come back a lot since the total numb attack on the thigh, I could have stuck a knife in it I reckon and not felt it.) It felt like it was stuffed with wool. With the ON I totally lost my vision in my left eye in a relapse but it started with everything looking faded. I have had 2 attacks in the same eye but thankfully my eye is almost back to normal.
My aunt had MS so I do believe there is a genetic predisposition.
My best advice would be to try and make all the changes that help MS (low saturated fat, dairy, wheat free) low sugar,and supps that help. I find folic acid and Q10 helps me.

Maybe its worth you having an MRI to see if anything shows. I hope its not MS but your symptoms do sound familiar.

I wish you the best, please keep us updated.
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Re: Optic Neuritis - now my leg is numb - worried - please h

Postby lyndacarol » Sun Feb 17, 2013 10:24 am

Here is my input: My advice is the same as I offered last year, Dave – general-discussion-f1/topic20385.html#p194984 I am not saying that you have MS now; as I did not last July, but I think many of your symptoms could be due to excess insulin (especially since you admit to gaining weight and insulin is known as a "fat-storage hormone"). I encourage you again to request a "fasting blood insulin test" from your physician (optimal test result should be 3 UU/ML or lower).
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Optic Neuritis - now my leg is numb - worried - please h

Postby MarkLavelle » Sun Feb 17, 2013 10:39 am

Davcos,

It's always a good problem-solving rule of thumb to start with the most likely explanation. MS and other neuro conditions aren't exactly rare, but every symptom caused by MS can have other causes that are more common.

So (a) I wouldn't assume that your problem with your left eye is also Optic Neuritis, and (b) your prior history of back issues makes it much more likely that your numbness, etc. is due to mechanical problems.

An ophthalmologist is your best bet for checking out the eye. If it is ON it'll probably be blamed on MS, or get you closer toward an MS diagnosis if you haven't already been diagnosed.

I'll probably get a lot of flak on this board, but I recommend that you run (not walk) away from your osteopath and never look back! Spinal manipulation may provide temporary relief for some back issues, but it does nothing toward healing or even long term improvement.

I see a physiatrist for anything that might be musculoskeletal, and he's also been my best doctor for sorting out which symptoms are mechanical and which are neural. The best thing is that physiatrists are "rehabilitation physicians," and they're all about fixing your mechanical issues (many do sports medicine): http://www.aapmr.org/patients/aboutpmr/ ... trist.aspx

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Optic Neuritis - now my leg is numb - worried - please h

Postby Davcos » Sun Feb 17, 2013 11:33 am

Thanks for the replies

Thats actually made me feel quite sick and quite faint, im not good with anything needle or knife and seem to be getting worse as getting older :/

Well one thing, I was made redundant from my job in November and since ive been around home ive been eating more biscuits, cakes and not great food so clutching at complete straws im not sure if this could be related?

I cannot stand to even touch my leg as the sensation is too weird for me to deal with :(

Despite my Dad having it, a lot of the things you have mentioned have gone over my head but I guess i need to read and digest.

I am 37, 38 in April actually and had really, really hoped that IF it was the worst case it could have copied my Dads and had the eye, nothing for 30 years then crept in, the thought of getting something so soon makes me actually want to be sick as im typing this :(

I appreciate your advice and replies but its obviosuly not what I wanted to hear, anytime I get the slightest tingle, twitch, ache I am on edge straight away as dread it being connected.

Another thing I should mention is I noticed a couple of times I had sat on the floor with my dog when I went to get up I had a bit of pins and needles but hoped this was just down to sitting in weird positions, I did speak to the consultant who said it was more than likley that?

When I had the MRi by the way she said I had a nice clear brain and pointed out a couple of tiny little dots on one side and compared to many she had seen it all looked good but was definately ON

I am totally petrified of this being the worst case as am the worst person in the world for running through crazy scenarios on my head of what could happen.

So this fasting blood insulin test is something my GP can do?

LR1234, so when did yours start if you dont mind me asking at what age? and what has happened since, pm if you like

Is there anything else I can be taking or doing to help? Do the Vitamin D 1000g tablets help?

I have been very, very lucky in my life I feel with not having many ilnesses apart from ashtma as a child, a billion colds and coughs and involved in a very serious car accident, so, as im sure everyone else does, i find this very very hard to get my head around.

I guess I need to contact the consultant tomorrow and go and see her :/

Thank you greatley for all who replied and to anymore who can help

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Re: Optic Neuritis - now my leg is numb - worried - please h

Postby LR1234 » Sun Feb 17, 2013 12:04 pm

Hey Dave,
Sorry bout the knife reference I have been ill for so long I forget to tread carefully with people just dealing with the possibility of MS who may be more sensitive to these analogies.

I have been ill since I was 15 with various symptoms.(after I got Mono/Glandular fever twice)
At the age of 17 though things became a lot worse after I had a GA for an unrelated issue.
After that point I was never the same. I had tremendous fatigue, muscle weakness, spreading numbness, issues with bright lights and focus. The numbness started in my hip/thigh area, then my back, then my scalp, then inside my mouth.
I have 2 different types of numbness....there is the attack numbness which is where the knife reference came from and then I have the loss of sensation which is what I am left with in these areas. I can feel touch and pressure and pain but I can;t get that tiggly sensation from light touch. Its like I have a coating over the areas.

So these symptoms were on and off for many years, I also had many attacks of hypoglycemia (and a fasting blood glucose test which included insulin) did reveal I had high insulin levels. I also felt fluey all the time and faint. I had stomach issues too.

I had 1 definable relapse a year and then I had 2, and then 3 in 2008 which let to my diagnosis in 2009. Vertigo was a biggie relapse along with Optic neuritis, a lesion in my spine caused constant pins and needles and tremors at night. I also had a cognitive relapse.

I have to say though that I feel my case is complicated by thyroid issues and in 2010 clotting my left jugular with CCSVI treatment. I believe this has had a negative impact on my MS.

However still at this point I have managed to heal from my previous relapses. I walk and run still. I have loss of sensation, no fatigue (I thank blood thinners for that) and some cognitive issues still (I get overwhelmed sometimes in public places and have trouble word finding sometimes and with spelling which I was always great at)

Feel free to ask any questions
L
(BTW I am 35 now, 36 this years so have had this for 17 years)
Added: I also take vit C, inosine, inositol and B12 LDN
Last edited by LR1234 on Mon Feb 18, 2013 5:18 am, edited 1 time in total.
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Re: Optic Neuritis - now my leg is numb - worried - please h

Postby lyndacarol » Sun Feb 17, 2013 12:28 pm

Yes, Dave, your GP can order a fasting blood insulin test to be done. It is not routinely done and requires a special request. A technician will draw blood from your arm; if the test cannot be done right away, the blood sample will be frozen. (This must be done to protect the insulin in the sample since, otherwise, the insulin will break down and become undetectable.)


By the way,…
I am on the mailing list of Dr. Denise Faustman, Director of the Immunobiology Laboratory in Boston and a Harvard University researcher working on a cure for type I diabetes. In her fall letter was this link to a video giving information on her work: http://www.myfoxboston.com/story/192352 ... t-diabetes

Then, there was this Bloomberg article with more details: http://www.bloomberg.com/news/2012-08-0 ... for-tb.htm

BCG is approved for use in the United States to prevent TB, but it is not given as a routine vaccine because the incidence of TB is low in the US. I know that this vaccine (for tuberculosis) is required for school-age children in the UK.

By any chance, Dave, have you had the BCG vaccine? Did you go to school in the UK? Did your father ever have this vaccination?
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Re: Optic Neuritis - now my leg is numb - worried - please h

Postby mrbarlow » Mon Feb 18, 2013 3:17 am

Hi. Sounds pretty similar to my experiences which include 1 bout of acute optic neuritis. I get occasional cramps in left leg, pins and needles in feet and hands, that crawling sensation your describe, and heat induced blurring in my left eye.

I was on Interferon for 18 months.

Otherwise supplements I use include;

Vitamin D - 10,000 IU a day / or sunbathing
Omega 3 - 6-8 grams of fish oil
Iron free multi vitamin
600mg magnesium
60mg Gingko biloba
800mg Quercetin
500mg Evening primrose oil
250mg Krill oil
100mg Co Enzyme Q10
500mg Inosine
200mg Alpha Lipoic Acid
100mg Thistle (not for MS but to help repair my liver that the Interferon hammered.


Diet - fish and chicken and lean red meat, veg, fruit and nuts. Minimal dairy and wheat. Lots of green tea.
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Re: Optic Neuritis - now my leg is numb - worried - please h

Postby ScutFarkus » Mon Feb 18, 2013 10:23 am

I'll second the other poster's comment that you really should look beyond Osteopathy for proper diagnosis and treatment of whatever is going on. Given your symptoms and family history of MS, you should get yourself to a neurologist who has specific experience treating MS, and get them to run the appropriate tests (presumably an MRI with contrast) and assess your condition. Hopefully it's not MS, since there are indeed many conditions that can cause symptoms like these, but if it is MS you want to treat it as such. Putting off a diagnosis is counterproductive, since most treatments, the MS first-line drugs included, are most effective when started early.

I also highly recommend doing your own research (not just by reading forums, where the good information is often buried under mounds of crazy ideas). My own favorite sources are uptodate.com, nmss.org, ms.about.com, and webmd.com.

I was surprised to read in your first post that your ON "wasnt bad enough for steroids". My understanding is that the current best practice is to treat all ON with high-dose steroids, and that studies have shown that such a steroid treatment appears to reduce the risk of subsequently developing MS. So again, I'd question if your Osteopath is really the best person to be treating you.

Vitamin D is good to take, but at best it has a small protective effect against MS, and seems unlikely to have any impact on current symptoms.

/Scut
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Re: Optic Neuritis - now my leg is numb - worried - please h

Postby mrbarlow » Fri Feb 22, 2013 2:27 am

ScutFarkus wrote:I'll second the other poster's comment that you really should look beyond Osteopathy for proper diagnosis and treatment of whatever is going on. Given your symptoms and family history of MS, you should get yourself to a neurologist who has specific experience treating MS, and get them to run the appropriate tests (presumably an MRI with contrast) and assess your condition. Hopefully it's not MS, since there are indeed many conditions that can cause symptoms like these, but if it is MS you want to treat it as such. Putting off a diagnosis is counterproductive, since most treatments, the MS first-line drugs included, are most effective when started early.

I also highly recommend doing your own research (not just by reading forums, where the good information is often buried under mounds of crazy ideas). My own favorite sources are uptodate.com, nmss.org, ms.about.com, and webmd.com.

I was surprised to read in your first post that your ON "wasnt bad enough for steroids". My understanding is that the current best practice is to treat all ON with high-dose steroids, and that studies have shown that such a steroid treatment appears to reduce the risk of subsequently developing MS. So again, I'd question if your Osteopath is really the best person to be treating you.

Vitamin D is good to take, but at best it has a small protective effect against MS, and seems unlikely to have any impact on current symptoms.

/Scut



I wouldn't be so sure of that. There has been at least one clinical trial in Canada which found 14000iu a day cut relapses in RRMS by 40% without any significant side efforts. Thats on a par with Interferon. A years supply of Vit D at 14000iu costs less than 1 Rebif shot.

I view Vit D as a no lose option, Cheap, limited sides, and loads of other health benefits besides moderating MS.
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