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Here I am again

Hello. I used to visit here a few years ago. I have had neuro symptoms for 10 years now. I stopped visiting when I was told by my neurologist that this was a stroke. Then last year it was all change - now he says I have "neurolical episodes due to migraineous phenomena" - not stroke. My GP says this is a euphemism for " we don't know what this is. "

The only test I have had is an MRI which showed grey/white areas appropriate for my age (I am now 48).

Sadly symptoms have worsened and new ones have occurred - permanent slurred speech, poor co-ordination , balance & memory, right side weakness has worsened and there is now some left side weakness, permanent tingling in face and head (right side only) occasional loss of colour vision, permanent blurred vision and some double vision.

I am due to see my neurologist mid July when he hopes to discharge me - which I find annoying to be honest. I have given up work and now do a little paid writing from home. But my whole life has been curtailed by all this. I keep it altogether most days - I did have a really good three months spell of reasonable health earlier this year and then another attack occurred and I am back to square one. The fatigue is like I have been hit by a truck.

If you are still reading - well thanks. This is a brilliant space :)

If anyone has any tips re my next neuro consult I'd be interested to read them.

Lynn.

Hiya   sorry about the situation you are in.

A woman of your age should not have these symptoms,so I would be taking a record of whats been happening and a time line of events,together with the consequences to your daily living as a result of them,and asking what he is going to do to find a cause.

If he seems unable or unwilling to do this I would ask your gp to refer you to an ms specialist.

Someone better able to give specific neuro input will be along soon,but just wanted to say hi and you know something is wrong so you have to fight if necessary for the tests.

Could your gp do the necessary blood work before July,and refer you to physio for your physical problems.

Pip

Hi Pip - Thanks for replying. You offer some good ideas and I will certainly see GP again. I have had two lots of physio, speech therapy and Occupational Therapy. All of these worked a treat but then I get another episode (hate that word - makes me sound like a TV soap!) and it's back to square one.

Lynn

Ive just read your reply to another cog fog thread and have to tell you,its not just msers.

My boss went in for an operation and the gowns etc were laid out for her...they came to wheel her down and she couldnt understand why everyone was smirking. She had put the paper knickers on her head thinking it was a hat and had tucked all her hair up in it!!!!!!

Have you got people around you to help you through this low period?

Pip

Oh Pip - how funny - that'll be me soon only they'll be Marks and Spencers pants and I'll be in the middle of Sainsbury's!!!!!

My husband is great about all this. We laugh about a lot of it cos it's that or cry. For instance, I took Holy Communion at church the other day and couldn't let go of the wine chalice to give it back to the preacher I had to prise my fingers open with my "good" hand. Hubby & I just grinned at each other but when we were back in our seats we giggled ...... a lot. Apparently we had both thought of the preacher saying "For goodness sake woman give that wine back, it's for sharing & NOT just for you"!!

Some days you just don't feel like laughing though, do you :)

Lynn.

There is not a chance that migraine could be causing your permanent symptoms.

I also think that old "age-related lesions" thing is a handy excuse rather than a genuine diagnosis. It is NOT normal for a healthy 48 year old to have multiple lesions!

If I were you, I would very politely but firmly tell the neuro that your condition has worsened and that you now have several permanent symptoms including x, y & z and ask the neuro to explain how "migrainous phenomenon" or migraine of any sort could cause them. Then ask for further investigation.

I hope he does the right thing and pulls his finger out!

Good luck!

Karen x

Karen - I really appreciated your reply - Both you and Pip have helped to feel less alone with all this and also to know that I am not imaginng all this and must just live with it. Thank you both so so much.

L.x.

 

Hi Lyn xx I'm in a similar position to you - desperately seeking answers!!

As I suffer from severe Acephalgic Migraines (migraine without headache) accompanied by numbness down my left side - I've been looking at something called Hemiplegic Migraine - it's very rare but who knows eh??

www.hemiplegicmigraine.org

There is also a facebook page and I must admit I'm shocked at how many of those suffering with HM are severely dsabled wth MS like symptoms!

Particularly after my recent brain scan showing white matter lesions in the frontal lobe I'm going to ask about this - also my mother, sister and brother all suffer from the same type of migraines

 

Karen - I found this and other research xx I know you suffer with migraines and with your extensive knowledge of brain MR!'s -- do you know much about it??

Is it reliable do you think???

MRI scans may reveal white matter lesions in young persons with migraine. These can and often are confused with white matter lesions due to multiple sclerosis or white matter lesions that occur in older people (periventricular white matter lesions).

In fact, between 12-47% of patients with migraine have these white matter lesions, compared to 2-14% of controls (Evans and Olesen, 2003; De Benedittis and Lorenzetti, 1995). When these are seen, it is the author of this review's policy to encourage the patient to consider use of migraine prophylactic medications (see following sections), and avoid vasoconstrictor medications such as "triptans". According to Evans (2003) as well as Dahlof (2005), the clinical significance of these lesions in migraine is unclear. Possibilities include relationship to migraine, an incidental finding, other medical conditions, or comorbidity of other diseases. Our thought is that, in persons with a moderate to large # of lesions, it is safest to assume that they are caused by migraine, and make a vigorous attempt to treat migraine with prophylactic medications.

xxxxxjennyxxxxxxx

Hi Kizzy - I think mine is supposed to be hemiplegic migraine - I too have no headache. It is rare.

But - according to my drs you are supposed to fully recover even if it several days later. But my speech and weakness etc  has never fully recovered and with each attack long lasting effects are worsening which is why I question this diagnosis.

 

Thanks for the links - am going to look them up.

 

lynn.

Hi Lynn xx get onto the facebook group - they all tell a very different story with some serious symptoms never going away x 

They are fighting like mad to change the name of the illness from 'migraine' as it is perceived by most to be just that x whereas it's a very serious neurological disorder. Hope you get to the bottom of it all lovely xxxjenxxxx

Here's the link for the facebook group xxx

https://www.facebook.com/groups/295001733860232/

Thanks Kizzy - I have looked at the link and will research more - I just want answers :)

To be honest am still not convinced this is migraine but either way I think more should be done for us as it is obviously doing neuro damage yet the drs just seem to disregard it saying "It's just migraine"

If this carries on and I have more attacks I daren't think what state I'll be in in a few years time - my speech for instance is getting bad all the time.

Lynn

I know Lynn x to be honest I think I'm just clutching at straws too!

As far as I'm concerned my symptoms and history/pattern fits RRMS. I'm just totally peed off that because my scans came back clear of lesions in the right places the neuro seems to have dismissed me (after just one initial 10 minute appointment during which he noted abnormal reflexes including a positive babinski test apparently)

He hasn't even indicated a follow up appointment to discuss this/options/what next etc etc. From his letter he just seems to be sending me back to the ortho spinal consultant - basically this is saying it's not neurological??!!!!!

I may be jumping the gun though - I don't know - I only have his letter to go by - I'm seeing my GP next week and I'm going to write a letter etc but I just don't know where to go from here!

I could afford to see an MS Specialist privately - but I don't see the point with the scan results and there is no way I can afford to pay for better scans privately!

Eww! Dilema xxxjenxxxx