single episode or MS

[Polly68]

Would anyone know how to interpret my lumbar punctur results?
The report reads: V_QIgG:8,72;V_QIgM:52,86. I read that the presence of a IgM means a high probability of next episode,I was diagnosed with myelitis (clinically isolated syndrome) in October 2007 but woory this diagnosis was not right and a MS treatment should start.

Thank you very much for any help/knowledge/information you have on this.

Many thanks again

[Polly68]

Please does anyone have any experience with homeopathy? It looks like my symptoms are reduced after 4weeks of homepathy.I was told lanthanoids and castanospermine have inhibitory effects on autoimmune diseases.Please if you have any knowledge about this,let me (us) know.

Thank you.

[jensequitur]

I hadn't heard that, but it doesn't surprise me!  Somehow keeping all this stuff to yourself can be really detrimental to your health.

[Polly68]

Dear sllowe&jensequitur,

Thank you both for your messages. Sllowe,I' ve decided to tell my mum today.
I didn't write that she's been diagnosed with dermatomyositis five years ago. It took the doctors two years to diagnose her. She has had some terrible symptoms before they started her on corticosteroids (her face was so red and swollen that we couldn't recognise her). I just worry that I might have an autoimmune disorder other than MS or dermatomyositis; I read autoimmune diseases usually get passed on from mother on daughter but in a different form...there is still so little known about it,I don't want to pursue treatment which might not be the right for me...My mum was given various things,given the severity of her symptoms the doctors wanted to act quickly which only meant she got terrible side effects (her vision got much worse, muscle pain to an extent they thought she has RA). I wish there was a way of an objective testing, I can see each day how much my symptoms vary according to my mood,sleep,diet etc. Jensequitur, I'm using homepathy but I know it's more or less placebo effects.But it helps enormously on the psychological level,I try to persuade myself it will work as my homepath says and this feeling of a bit of reassurance is invaluable. I lead such a healthy life (never smoked,follow all healthy eating and exercise guidelines), I feel so frustrated and helpless about these attacks...
Today,disclosing the truth to my mum really helped to fell better,so thank you for encouraging me to do that.

P.S.Did you hear about the Spiegel's (1989) hallmark study where he showed that emotional disclosure can have 18months survival effect for metastatic breast cancer women?

[jensequitur]

To be honest, I don't think homeopathic remedies will help you.  Taking a good multivitamin, getting plenty of sleep, making sure you have a balanced diet, getting exercise - all those are good for people with MS.  But don't rely upon homeopathic remedies to cure or help your condition.

I've been taking Copaxone for two years now.  I've had (at best estimate) about six relapses since 2006.  I was compliant and taking my copaxone every day like a good girl, and then I got really tired of the needles, so I stopped taking it every day (I was doing it every other day) - and got another relapse.  It does seem to reduce relapses.  I don't have any side effects from the drug, other than the site reactions.  So I would go ahead and pursue getting treatment.  You don't want to allow your disease to progress quickly.

[sllowe]

Hi Polly,

This past December issues sound like your 2nd go w/it. Please let the Drs know, would you?

Ok, since they are not treating CIS in the UK, are they at least prescribing a round of steroids? At a minimum, this standard of care should be ordered up.

Polly dear, I know you feel badly for the feeling that you are making your family feel unhappy.  Please don't burden yourself w/these thoughts.  Let them help you, and start by making another appt to be checked.  Let them be your voice at the appt. if need be.  

One day, when you get up the strength, just say to, calmly, that some of your problems of the past have begun once again, and it would be helpful if they would be willing to help you convey this to the Dr.

Please tell the Dr about the lack of sleeping too.  I've had this and it's so horrible and makes everything worse.  It could be due to the lesions, they cause so many problems.

Stick w/us will you?
ttys,
Shelly

[Polly68]

Dear forum members,

Thank you so much for all your replies,I was really touched when reading your words of support.

I'm seriously worried my CIS is not treated but as Suzie9 says,living in the UK means  that you need at least two clinically significant episodes over a 2 year period to get prescribed the Disease Modifying Therapy. It's very frustrating and depressing just to wait and see what happens. My first attack was characterised by a numbness (almost paralysis) of the whole left part of my body and a later pain by even a gentle touch (the worst was when taking showers or changing temperature).I was then sent to hospital,spent two weeks there and was treated with IV steroids.This was in October 2007,I have had 2 other MRI scans since. The last one was in June 2008 and it was found that the lesion (found in my spinal cord C3-4) shrinked from from 5mm to 3-4mm. The doctors said there is no progression of the disease and I shall continue as normal.The symptoms have gradually disappeared and last autumn I really felt as if nothing had happened.However,beginning December and now I can feel the numbness coming in my left leg again,my left hand gets swollen now and there again.I'm terribly worried it starts all again but I don't know what to do.I can feel all the symptoms worsen whenever I think about it,I haven't slept properly for weeks now.I'm only 23 and I don't want to tell my family and boyfriend as I know that seeing their sad faces would make me more sick.They were so worried about me last year and I felt terribly sorry for making them unhappy.I don't know what to do.I keep persuading myself that it will all go again,I started homeopathy two weeks ago,I was taking some homeopathy medicine last year too and maybe it was the reason for the rapid recovery. I know I shouldn't be waiting too much,but on the other hand,I worry to start any strong medicine because of the side effects.It's so difficult to diagnose an autoimmune disease,I hear so many stories of people being much worse once they started the treatment...
Thank you again for any comments/replies.

[Suzie9]

Hi polly,

I also have Clinically Isolated Syndrome. Diagnosed in the summer, first attack of Paraethesia around my spine 2 years ago after the birth of my second child. (I had a LP go wrong and I am having another soon).

I am also not on meds and concerned as to weather this is right. I am in the UK and told I need 9 lesions or more to qualify for been on meds and I have 3 or 4. On my brain and my spine.I believe there is an 80% chance of developing clinical MS in a few years if you have CIS and lesions, however if you have CIS without lesions the percentage is lower.

I have only had sensory symptoms to date. What about you?

[doni54]

Hi Polly, and welcome to the forum.  This is a great place to be when you need support.

I agree with everything Shelly has said and look forward to getting to know you better.

doni

[sllowe]

Hi Polly,

Were you offered to start DMDs in 07? Those dx'd with CIS have a large chance to go on to developing definite MS, and I think it's like 80%, but have to check the figures.

There are Drs who take the "wait and see" approach, and others who treat CIS with the meds because the earlier treatment is started with this disease the better. It's proven in the studies.

How did you get your dx? Can you give us a little more about you? Your lesion load, what happened that brought you to the Dr. etc.  You don't have to, but it's helpful to us.  I'm Shelly, and I was dx'd in 07 also.  I too thought my dx was wrong.  But, I was wrong.  The more you know, the better you will feel.  You are in good company here.  I just worry that your CIS is not treated and would love to know more about what you have going on.

Oh, my 2nd opinion Dr. said that even if my attack was my 1st, he still strongly suggests starting meds. I'm on Rebif now, and I'm not great, but not as bad off as I was during that attack.

Hope to see you around!
Shelly