pLEASE PLEASE Help I am desperate for advice with M.S

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pLEASE PLEASE Help I am desperate for advice with M.S

Postby melsy » Thu Oct 18, 2012 5:58 am

HI Guys,

This is my first time on here and I am in desperated need to share my experiances and hope that others on here can share theirs with me, as I have genuinly had enough and need to discuss my current situation with others.

In brief, my symptoms:

Jan 2012 started suffering fronm cognitive impairment (learning new things become difficult and my short term memory affected)

April full blown attack:

Paralized episodes - conscious, although non responsive no movement

Sezuire type episodes - consicious, although non repsonsive and strong spasticity movemtments, myoclonic jerks,followed by tremors all over the body.

Chronic fatigue, almost bed ridden

Chronic right leg ataxia, bowed and buckled inward

Stroke like symptoms

intollerence to heat and sunlight

brethless all the time

jerks and electric shocks in face and my jaw keeps going rigid

Muscle cramps in lower legs

pin and needles in hands, feel and arms

Neuropathis pain in knees, ligaments, feet and rib cage

walking wobbly and off balance

waekenss and numbness

erractic bowel and bladder - sometimes constipated, overly urinating, and bouts of diahreah

Moods swings

Sweating

Referrals - 7 trips to A&E due to respitory concerns, sezuires (non epileptic) and stroke like symptoms

referred to Neurologist and was kept as in patient for a week for tests:

EEG clear, other than the video which revealed the sezuire episodes that are not epilepsy

EMG clear - spinal tap clear- bloods clear - CT Scan of brain clear

First MRI Scan without contrast revealed - HIGH SIGNAL INTENSITY FOCI IN VARIOUS REGIONS OF BRAIN - radiologist suggested demylinination - perfromed in May 2012

Sent home and was told it was psychogenic or stress and or ageing, please note I am 37 years old and normally healthy!!!!! couoldnt beleive what I was hearing!! demanded a second opinion from another Neurologist.

Referred in September - 2nd MRI performed with contrast revealed: high signal intensity only in the front lobes no leisons found this time.

From my understanding the 2nd MRI being 4 months after the ist has revealed less intesntiy and only one area (front lobes) and the previous lesions have diminshed. this must rules out the age theory as the mri would be the same, ageing spots/leisions would not just disappear???

Kidneys and thyroids, hormones etc all clear and normal.

Has anyone else experiance this??? I still say I have multiple sclerosis which I have maintained since day 1, even A&E thought this attack was M.S which lasted 3 months, as strokes have been apparent. I was not stressed when I first became ill, I now cannot drive or work or go out alone. No ones is telling me anything, my new neurologist has said nothing really, when I asked him directly about M.S he said: im not convinced as yet and I do not have the opitcal issue that M.S sufferers have, I have had only one very severe attack. At present I have picked up a little and am feeling better than before, I am still having sezuire episodes and am tired alot and still have myoclonic jerks but have improved 50%.

Can some please help!!!!!

thanks in advance
melsy
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Re: pLEASE PLEASE Help I am desperate for advice with M.S

Postby SpectrumFL » Thu Oct 18, 2012 7:05 am

Can you call the first MRI place and ask what level MRI machine they used, and also the second MRI place and ask which one they used?

Also ask if they did "MS Protocol" for both, or either of them. I apologize that this post isnt getting you closer to an answer, but I just want to be sure that MRI intensity level was the same for both. If they were the same (1.5 Tesla or 3.0 Tesla) then the diminished lesions are something you consider accurate. If the first one was a higher level scanner (3.0 Tesla) than the second (1.5Tesla), this may account for the changes in lesions found, to some degree. Just want to be thorough and rule out that possible variable.

Anyone with more information on the topic please correct my information if its wrong.

The two op
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Re: pLEASE PLEASE Help I am desperate for advice with M.S

Postby MarkLavelle » Thu Oct 18, 2012 7:54 am

melsy wrote:my new neurologist has said nothing really, when I asked him directly about M.S he said: im not convinced as yet and I do not have the opitcal issue that M.S sufferers have, I have had only one very severe attack.
(a) Almost half of all people with MS have never had optic neuritis.

(b) "Only one attack" is significant. It's called Multiple Sclerosis because just one attack isn't enough to be sure (a single attack is sometimes called CIS - clinically isolated syndrome). Many neuros will proceed with MS DMDs for CIS (especially if you have good insurance), but many will not...

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: pLEASE PLEASE Help I am desperate for advice with M.S

Postby HarryZ » Thu Oct 18, 2012 8:01 am

Certainly sounds like a very severe first episode if it is indeed MS. Like the other poster mentioned, getting an MS diagnosis so quickly normally doesn't happen because of other possibilities.

You mentioned that you are seeing a neurologist but is he/she working in a MS Clinic? If not, I would highly recommend that you get referred to the closest MS Clinic because they are more up to date in diagnosing and treating MS.

Good luck.

Harry
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Re: pLEASE PLEASE Help I am desperate for advice with M.S

Postby melsy » Thu Oct 18, 2012 8:13 am

hi thanks to all who responded,, and yes my new neurologist specialzies in MS, he also said he would of expected to see obvious shape and size m.s plaques due to the severity of the attack, upon which was not present, only high signal intensity foci in various regions??? but iv been informed that it is all to common for lesions of disappear and for mri scans to be essentially normal until the condition has progressed? so I dont know,, almost everything else has been ruled out iv even had a heart echo,, again clear,,, so I am at a loss guys :sad:
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Re: pLEASE PLEASE Help I am desperate for advice with M.S

Postby HarryZ » Thu Oct 18, 2012 8:42 am

Melsy,

This situation happens often with new patients who are suspected of having MS. It's just another frustrating part of the disease which is total unpredictable. It serves to add more stress, something that someone in your shoes certainly doesn't want or need.

I guess you will have to wait and see how this pans out and that won't be easy to do. The emotional stress alone involved in the waiting game isn't good for your health and you probably are very aware of that.

Whatever happens, the best to you.

Harry
Last edited by HarryZ on Fri Oct 19, 2012 4:58 pm, edited 1 time in total.
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Re: pLEASE PLEASE Help I am desperate for advice with M.S

Postby Selmahope » Fri Oct 19, 2012 4:52 pm

Many of us fall into the have MS symptoms but no diagnosis for MS. For me the diagnosis was chronic neuro lyme (but neuro's say not). Treatment with an herbal protocol made me neurolgoically worse. A few drugs sent my body over the cliff with my 3rd MS type attack. My problems started 14 years ago with a diagnosis of fibromyalgia, 6 years ago optic neuritis, increasing symptoms with distinct attacks when I tried the lyme approach. Knowing what I know now. If I could go back to age 37 -14 years ago what would I do? Start meditating daily- reduce stress, learn mindfulness techniques. Eat mostly organic. Follow a Swank, Dr. Mcdougall (see his website on MS- doc in Hawaii- was friends with Dr. Wank), or Dr. Jelinek diet (his work is based on swank- he has MS himself and is doing remarkably well), exercise. Become grateful- you dont' have a terminal disease. Relax and learned to trust in the universe, god. Studies have now proven stress is bad for MS. Look at detox- i.. heavy metals, FIR sauna, clean purified water source, eliminate chemicals on your body in your home, do a parasite cleanse (see ultimate zapper info), etc.


Look at the work of Dr Wahls who has recovered from severe MS. If recovery is possible in long term patients who follow these measured-then the sooner you take action/prevention to reverse your symptoms the better off you will be. Dr wahls follows a paleo approach is which is counter the work of swank, mcdougall/jelinek.

Oh yes and lots of fresh juices, salads, raw food..........

Check out the Chronic Wellness Coaching by Lauire Erdman and her MS story.

Following these kind of approaches -I have reversed the downward spiral attack that was 10 months long and no end in sight 3 years ago and remained stable the past 3 years.

Namaste, Selma
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Re: pLEASE PLEASE Help I am desperate for advice with M.S

Postby Selmahope » Fri Oct 19, 2012 5:13 pm

check out some links like these

http://www.bettyshouselifeafterms.com/NL9-2012.htm
http://www.mymsrecovery.com/
http://healthwatchman.com/amazing-healing-story-ever/
http://www.youhealyou.net/
http://www.overcomingmultiplesclerosis.org/
http://www.drmcdougall.com/misc/2009nl/jan/ms.htm

You don't need a MS diagnosis- you have a chronic illness-time to get to work. You are young and only been ill a short time-not alot of damage has been done. Time to get to work and get healing!
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Re: pLEASE PLEASE Help I am desperate for advice with M.S

Postby stillfighting » Fri Oct 19, 2012 5:37 pm

It is common in MS for the lesions to come and go. In other diseases that cause lesions they do not come and go.
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Re: pLEASE PLEASE Help I am desperate for advice with M.S

Postby Taurus » Fri Oct 19, 2012 7:29 pm

Please start taking LDN after studying literature IMMEDIATELY and get yourself checked for CCSVI.
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