Hello, new here (Wanted opinions from actual MS sufferers.)

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Hello, new here (Wanted opinions from actual MS sufferers.)

Postby mrsjitters » Sun Mar 14, 2010 1:26 am

Hi, I'm "mrsjitters":lol: I am 20 years old. I have yet to be diagnosed, but I am certain that I have MS. I also suffer from anxiety disorder which, I guess, makes it hard for doctors to believe me or take me seriously. My problems started last summer when my whole body went numb & I got extremely dizzy out of the blue. I was so scared, that this brought on full blown panic attacks (which I haven't had in years). I developed new symptoms over the summer, including weakness, fatigue, painful ice pick headaches, bright spots in vision, weakness in urinating & bowel movements & last but not least the brain fog. I went to doctors so many times; they always told me it was anxiety. I finally got an appointment for an MRI a few months ago but couldn't go through with it because I fell pregnant (by accident) & they thought it would not be a good idea. Since I got pregnant my symptoms have eased up and I haven't had any new ones. However, I still suffer from the bathroom problems and the brain fog. My family & husband don't really believe there's anything wrong with me and it makes me feel so alone. I'm really terrified my problems will return with a vengeance after my baby is born. I just wanted some advice. Is there any way I can avoid a relapse?? Like change of diet? exercise? anything?

Thanks :wink:

Forgot to add: I'm from Canada. (Near Montreal Quebec.)
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Postby kevin4apenny » Sun Mar 14, 2010 5:04 am

:) Hi Mrsjitters

I had the same reaction from some of my family ... perhaps a bit of denial?
Don't worry, why should they be any more sure than the doctors.
Well no you've found Thisisms - rejoice ! A geat Forum eh? Such support and LOTS of knowledge/info.
I nursed MS so I knew in 1982 that I'd had presenting features but couldn't get a diagnosis. It has to be said the symptoms can resemble stress...but I reckon they can cause stress big time. So can people NOT BELIEVING YOU.
I just began a relationship that hopefully will mean I may move to California :P but then I had a ?major relapse - for the first time really.
Perhaps I am just really worried, who knows.
Then out of the blue came news of PAOLO ZAMBONI and his discovery of CCSVI. I notice the interest in this topic and Dr Z's LIBERATION TREATMENT is TEN TIMES that of the next most looked at topic on this site ('nuff said). The timing is (almost) perfect, if only I can get the money together. I am going to get this treatment ASAPWhatever we 'have' we can all get stressed and anxious..and I am lucky: I am NOT pregnant (good luck with that).

Stay strong and stay in touch.

Kevin4apenny
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Postby msgator » Fri Mar 19, 2010 6:44 pm

Hi msjitters,
it is not unusual for diagnosis to take time. It took three years for me, despite MRIs. The pregnancy may buy you some time. I felt fantastic during both my full term pregnancies. I would highly recommend nursing, because it seems to prevent the prost pregnancy flare ups. There has even been a study on this topic, unfortunately I don't have a link for you on that.

Good luck and try to stay positive. Take good care of yourself.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby mrsjitters » Sat Mar 20, 2010 11:37 am

Thanks for the responses! I have read the thing about nursing and already decided I am going to breastfeed. I just want to be healthy enough to take care of my babe. I hope it helps.
I also read about the liberation treatment. At first I was excited but then I heard some patients had complications because of the surgery and that one of them even died..? 8O and now I'm a little apprehensive about it.
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Postby kevin4apenny » Sat Mar 20, 2010 1:58 pm

:? Hi Mrs Jitters

I was surpised to read that of fatality.... :!: Could you perhaps expand on this ? It is alarming and very sad. I wonder if there were other factors involved.
Isn't the site a good way to keep in touch?

Good luck
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Postby mrsjitters » Tue Mar 23, 2010 2:38 pm

kevin4apenny wrote::? Hi Mrs Jitters

I was surpised to read that of fatality.... :!: Could you perhaps expand on this ? It is alarming and very sad. I wonder if there were other factors involved.
Isn't the site a good way to keep in touch?

Good luck


hi kevin4apenny

Yes, this site is great. I'm glad I found it. Here is the link where I read about the surgery complications.. http://www.medicalnewstoday.com/articles/181717.php
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Stents, Risks and Misquotations

Postby kevin4apenny » Tue Mar 23, 2010 3:23 pm

:) HI Mrs Jitters

Thanks for the reply and thanks also for the link and take care, remember stress can cause panic attacks which will make you feel dizzy and numb/weird sometimes by the way, as can PREGNANCY :D .
I knew there would be other factors in the fatality case. Existing family predisposition to haemmorrhage AND anticoagulant medication.... Headlines can be dangerous, yeah?
I wouild still not hesitate to go for anything that could give me a chance to live my life to the full rather than gamble with possible progression of MS. The drugs used have some awful side-effects too. Its a matter of weighing up the pro's and con's. At least I want to have the SCAN. I have written a strong letter to my GP about my right to have a diagnosis.
I am pasting it here...please feel free to comment (anyone) if you think it needs changing before I print and hand it in to the surgery. Sorry for the length..and any typo's.
By the way, Dr dake's lecture ref'd to on you tube is EXCELLENT

http:/ww.youtube.com/watch?v=adbVIR1h7h8&NR=1

Take care - stay strong and happy


Dear Dr *&^*&^&^ ( to protect the gorgeous :D )


I hope you are well. Please excuse my writing to you, I do not want to appear at all difficult or officious. I have, as I have told you in person and in writing, I know how busy the Practise is and I always have been pleased with the service you provide.
I saw Doctor Forsythe and I said to her that, because of the restrictions on the referral system, I feel I must put in writing my request to have my MS looked at urgently. More specifically MY JUGULAR(and other) VENOUS FLOW.
I seem to be in the middle of a relapse and I know you will understand, that I want to access what informed help and care might be available before I deteriorate beyond any possible repair.
Now I am told that the present referral pathways available make it impossible to refer me for a TRANSCRANIAL DOPPLER ULTRASOUND to ascertain whether I have STENOSIS of my JUGULAR or AZYGOS veins which, as you would see from the lecture by Professor Dake* is shown to produce reflux of blood back to the brain, in 100% of the MS patients ( study by Dr Zamboni, Italy ) compromising the Blood/brain Barrier with consequential effects on the Immunological process.
The phenonemon of circulatory problems in the brain is not new, indeed the theory was the FIRST aetiology proposed for MS 100years ago. There is evidence from the first two authorities to study the condition; Drs Edouard Rindflescht and Tracy Hubbard is clearly documeted. Moreover, it is completely consistent with features of MS such as urinary frequency (esp. at night), 'brain fog' panic attacks** insomnia. fatigue, heat sensetivity, cognitive etc.
**response to ?toxic presence of Iron deposits in the brain as opposed to a psychologial phenomenon. It is an added complication that MS patients can be often, althoug not by yourself, perceived, and treated, Neurotic which can exacerbate symtptoms as can the lack of response to this current knowledge.
In light of my symptoms for as long as I can remember, I must insist, as is my right,t to a diagnosis, regardless of whether certain procedures are being carried out or not.
I wish also to make it clear that I charge the NHS with the responsibility for performing such diagnosis and will them hold them responsible for any failure or refusal to give me such a diagnosis as delay could seriously and negatively impact on my health.
I put this in writing because I want a written reply from whom I am referred to stating the reasons for any denial of this care ( i.e.Diagnosis). If Professor Paolo Zamboni could discover the Venous malfunction that led to his hypothesis and research then the work can clearly be done.
My demand for diagnosis/treatment is made on the light of the total lack of any effective care or treatment.
Doctor Forsythe suggested that I pay to see a private Cardiovascular Surgeon as my only means of accessing a diagnosis. Virginia Bottomley as Health Minister in the 1990's gave an undertaking that the NHS would fund 'any treament that could be shown to be of benefit to patients be it mainstream or complimentary' [Nursing Tmes]. I do not believe this has been resinded. If the NHS have NO other care to offer me, I suggest that The Health Board has no option but to give me the care I ask for.

Dr McNeil, I want to make it clear that this letter is made occasioned by shortcommings within the NHS framework and /or funding and not directed at the Practise.
My demand for diagnosis/treatment is made on the light of the total lack of any effective care or treatment.
I have no wish to go blind, become incontinent or even die before I can access help: it is evident from Pofessor Zamboni's treatments thus far that less advanced cases have a far greater chance of success. I am runing out of time.
Sincerely

Kevin GP Campbell

See below for Prof. Dake's lecture on CVSVI
*'Prof. Dake's presentation on CCSVI part 1' (what I typed in to hear rofessor Dake's lecture to the The School of Investigative Radialogy'.... or the link below will also suffice if clicked on:
*http:/ww.youtube.com/watch?v=adbVIR1h7h8&NR=1
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Re: Hello, new here (Wanted opinions from actual MS sufferer

Postby mose » Tue Mar 23, 2010 4:33 pm

Please do remember, the odds are very good that you don't have MS at all. Please do not take this as rudeness, but your post sounds like pure anxiety which is very, very common(and much more common than MS).

Between now and when you are physically able to get an MRI, I would highly recommend spending some time with a therapist.
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