Had enough! need help or advice desperatley!

New diagnosis and before diagnosis
1

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 andam tired

2

Wow! There`s a lot gone/going on for you indeed!

Now we have amongst us, a very helpful MSer who tries her best to interpret MRIs and other medi-speak!

She is Karen, with a user name of Rizzo. If she sees your post, im sure shell reply to you.

I`ll give her a nudge for you.

If it is of any help to know, I`ve been doing the rounds for 14 years and still have no diagnosis.

Oh, welcome to the forum.

luv POollx

3

Hi melsywooh I’m sorry that I cannot comment too much on your symptoms except to say that something is clearly going on and from what you say it seems neurological. What I would say is this though - not all people with MS have optical problems. I haven’t had any problems with my eyes at all but have been dx’d with MS. I hope someone else on here will be able to help you better than I. I just wanted to lend some support and let you know that I’m thinking of you and I hope you get some appropriate help soon. Teresa xx

4

hi guys and thanks to all who has responded.

Hi Teresa thanks for your comments, I agree with you regarding the optical issue, not every persons has the same M.S symptoms do they, hence my disbelief of the original neurologist who suggested stress, I was gob smacked and I recon anyone who reads my symptoms will agree that thats highly unlikely, forgot to mention the vertigo I suffer, seems to only happen when I drink two glasses of wine and then it makes me so tired and off balance I dont have any now, my husband can barely wake me if i touch the stuff…cant say stress causes that either!! x x

5

Hello and welcome

I’m not a neuro or a radiologist, but multiple high foci occurring with a multitude of symptoms is neither stress nor aging! However, so many lesions disappearing between scans, so many symptoms from one attack and a clear spinal tap suggest to me that it is much more likely to have been ADEM than a first attack of MS.

If it was ADEM, then you can expect to have some residual symptoms, but hopefully these will gradually improve. The best news is that it is highly unlikely that you will ever have another attack.

If it is a first attack of MS, then it cannot be diagnosed until you have a second attack (and lesions in at least two areas typical of MS). This is because a decent percentage of people never have a second attack.

So, assuming that ADEM and MS are the most likely causes, chances are that this is it - it will never happen again!

I certainly advise you going with this attitude - because there is absolutely no point in worrying about something that might never happen :slight_smile:

Hth.

Karen x

6

Hi Karen, thank you for your post and the input regarding ADEM, I have only a little understanding of this condition.

I have not had and viral infection and all bloods are clear so far anyway. I was tested via blood for limbic encephalilitis and nmdar receptors both of which are negative. The current MRI was looked at for the limbic e, but the radiologist says there is nothing to suggest this condition,?? I am not sure whether ADEM has any connection and would this be detected on my current mri??

Thanks in advance

7

ADEM looks like MS on MRI - white spots of demyelination. In fact, they are so similar that they are often confused. The big differences that I know of are that ADEM lesions tend to have resolved by the time a second MRI is done (typically months later) whereas MS lesions are normally still (at least mostly) there and increase in number over time and that almost all people with ADEM will have a negative LP whereas almost all people with MS will have a positive LP (oligoclonal bands in CSF, but not serum). I think it would be pretty unusual to have no inflammatory markers in the CSF if it were ADEM though, so your clear LP throws some doubt on it, but there is at least a 5% false negative/positive rate with all tests.

I don’t know anything about limbic encephalitis and anti-nmdar encephalitis, but a quick search suggests that neither should be confused with ADEM or MS on MRI, e.g. limbic encephalitis does cause white spots on MRI, but it looks like these would be restricted to the limbic system. The lesions also don’t look like demyelination to me, so I’m sure a trained radiologist would be able to tell the difference and your report did say demyelination. It’s only sensible to test you for them though as confusion and fits seem to be key symptoms.

ADEM normally follows a virus / infection or some vaccines, but I’m sure I’ve read that it can also occur without any obvious trigger (perhaps the patient has had an asymptomatic virus??). It’s a separate condition to limbic encephalitis and anti-nmdar encephalitis so I can’t imagine that they are related in any way.

Kx