Ms hug

Thanks for replying, I've never had it happen before, just had the feeling dizzy and pants when in a hot bath, but Sunday it felt like someone was squeezing my chest, like I was taking half a breath if that makes sense. Hope ur ok pm me if you fancy a chat x 

Agreed, I take 5000ui a day and you can get them cheap from eBay

Hi, thanks for ur reply when I first started having symptoms, they done bloods I have low vit d and they put me on a 800iu a day which is low compaired to yours. Not sure if to request another test. Last night in bed I would get horrid pins and needled in my hands . Oh looks like I'm back to the doctors then x 

You must go on much higher dosage, like I mentioned.  You don’t need another blood test as you have indicated that it was low…. How low? You should how ever as a matter of course have full blood tests at least every 3 months! I suffer from relapsing-remitting MS and briefly went on two different MS medications, which I had to stop because of serious side effect with my heart.  After reading upon much information on vitamin D I thought that the link between low vitamin D and MS was very obvious and made great sense.  I then decided to experiment with high dosages of vitamin D and found that my worsening symptoms, especially with my legs started to get better.  In actual fact, symptoms like pins and needles when walking and horrible sensations started to go away within 4 weeks.  The key thing is stopping new attacks as it can cause long-term damage, which your body may not be able to repair fully.  Vitamin D is not poisonous even at very high dosages like 24,000 IU’s but I would only stick to 6,000 IU’s daily. I take Solaray Vitamin Lemon 2000 Lozenges. Also, avoid gluten and especially cows milk.  I am 100% that it is vitamin D that has kept my attack at bay and watching what you eat as I have not been on any MS medication for over 2 years and have not had new symptoms.  What is your ethnic background?

 

I'm white British, I suffer a lot with my legs, I lose the use of my legs, I have to wait for my legs to get stronger again before I can walk. I get the shakes forget half way though a convo, bladder problems where I can't go for a wee, and now a mind blank sorry xx 

... Have they already ruled out these other disease, as they can cause symptoms like MS: 

Lupus

Lyme disease

Syphilis

Hughes' syndrome (other wise known as sticky blood)

The key thing is to push yourself no matter how hard it may seem, by way of exercising your legs, even in the sitting position...  Seems you could do with physiotherapy and Hyperbaric Oxygen Therapy.  Visit _____ and speak to someone in your area. Oxygen therapy will quicken your recovery and especially help with your we and bladder problem (oxygen therapy should be long tearm) alot of people give up on it therapy - don't !!!. Unfortunately the NHS will not pay for this type of therapy as they say that it is unproven to be beneficial - untrue !!!  They just don't want to pay for it and your G.P. will also no point you in this direction b*st*rds pardon my language.

Have you had an MRI of your head and spine?  I am sure it will show that you have lesions, both in your brain and spinal cord...

What type of MS consultant are you seeing ?  The one you should aim to be seeing is the clinical MS specialist.

Patient Moderator Comment: I have removed an URL (a link) from this reply. If you are interested in this removed information then please contact the author via the Private Messaging system. Thank you.

... There are other disease that can attack you nervouse system also, like HIV which I forgot to include in the list.  Have you had the full blood test to rule out all these diseases ?  Once you have the results, ask for a repeat of all your blood tests ! xXx

... Also, hot baths should go out of the window, especially if you are symptomatic and even if you are not, it can bring on symptoms and actually make you feel very ill !!!  Warm baths from now on 

...  Also, I don't think you had an MS hug - it was more to do with your sitting in the bath and the hot water - this has happened to me and I nolonger take hot baths  Over and Out!

Hi Jaime

Are you on any disease modifying medication. Can you take high dose vit D with copoxane. I have a close family member who has had ms for 10 years and over time it is getting debilitating and he is on crutches and wheel chair.

I was on Avonex and copaxone for a very short period of time but had to stop as it effected my heart seriously.  After I did much research it became very obvious that vit D and the sun had alot to do with MS and I have my won theories as to why.  Anyhow, without any prompting from my consultant as he had not mentions anything about bit D, I went on high dosages of vit D 4000 iu's daily for the first 4 weeks and then reduced it to 2000 iu's daily and noticed within 2 weeks that some of my symptoms where getting better and a few months later my MRI's where showing that my lessions on the brain and spinal cord where healing.  I have been on high vit D for nearly two years now and it seems to be keeping my MS attack at bay (fingers crossed).  I was very angry that my consultant had not mentioned to me anything about vit D so I mentioned to him that I had started taking high dosages of vit D which he then agreed and then went on to tell me that there was a correlation between vit D and MS...  Ofcourse I already knew this no thanks to him.  The fact that he did not tell me or requested for me to go on high dosages of vit D did not wash with me and so was very angry about this and had less trust in him. Even though I have no new symptoms I still get old symptoms as my previous attacks have some what permanently damages certain areas of my nervous system...  And so to answer your question, yes your family member can go on high dosages of vit D 4000 - 6000 iu's daily.  I'm am shocked that your family member is not already on high dosages of vit D !!!  Tell me more about you family member:  How old is he, which country is he from, is the copaxone not working there are so many question that I would like to ask ?  Me personally, I would stop taking these drugs once I was on high vitamin D.  These drugs can do extreme damage to the body.  Your family member like myself has already some significant damage which can get better but will not totally go away.  However if the vitamin D can keep the MS attack at bay then this is what he wants.  The body is a miracle and can heal it’s self.  Keep in touch and let me know how things go.   Send me a private message if you prefer.  Best wishes, Jaime De Aguiar

Hi Jaime

Thank you so much Jaime I have passed this information onto him. I will message you

Good luck

Nikki

Thank you so much for this information and I agree that some MS specialist do hold back from information that will help our bodies. I think they get paid for referring people to take the MS therapies those injections that are not a cure and are suppose to delay the process/progress of disability. So sad but I have seen more people with MS doing well that have taken the natural route to healing rather than the injections. Of course everyone is different but to me why does it seem like they do not want to refer what works. Thanks again for your post.