was I miss-diagnosed

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was I miss-diagnosed

Postby james325tdss » Tue Sep 08, 2015 3:33 pm

Hi all !

Hope you can share your thoughts on this

I apologise for the length of this post in advance

Right to start off.

5-6 years ago one day my upper eyelid on my left started twitching which at first I thought I was tired stressed ect. So I tried to get more sleep , less stress. After three months of constant twitching I started to grow concerned it was driving me nuts!
So I started taking magnesium pills ect and stopped any caffeine. Then one day it stopped! Great!
The next morning when I woke up the lower eyelid on my right began twitching I thought then this isn't right.
And then shortly after everywhere was twitching on and off calves , thighs , shoulders , abs you get the picture. And is wasn't just a twitch sometimes it felt like what I can only describe as a rumble in my muscles like a spasm but not painfull and also sometime my muscle would "pull up for a second or two and drop back" (sorry im trying to explain the best I can)
I though I have either MS or ALS. From the literature I had read this was ALS.

I went to my GP and told him of my concerns. He said " the chances of someone of 26 having ALS is 1 in a million. He said it was as likely as me walking down the road and finding a bar of gold. It could happen but very unlikely ".

I went away with that in mind but the twitching ect continued so I returned and said I would like to pay to see a neurologist.

2 weeks later i saw a neurologist by that time twitching had subsided somewhat but not gone.
The neuro was very thorough and test my reflexes , strength , balance ect , and said " you dont have ALS or MS , I would have found something clinically but you are totally normal. Its benign you are fine"
I took this a gospel and just went on with my life.

The twitching subsided further but never went every now and then I would get a twitch here rumble there.

Fast forward 5-6 to now .

Driving home from work beginning of april suddenly my right hand which I was driving with suddenly was complete pins and needles . It lasted 30 secs or so. I immediately thought thats MS.

By the time I got home my finger tips on my right hand felt strange all I can say is the felt bruised not painful but as though there were injured within the hour my other hand fingertips were the same. I thought MS didn't present symmetrically so thought it cant be that must have injured them at work.

5 weeks later the sensation had remitted somewhat but was still there. Then I started noticing when I bent my neck forward I had a rumbling in my back and tingling in my feet (lhermittes)!

Went to the GP four times they said "trapped nerve , disc problem but not ms balance ect fine " He sent me for a cervical MRI.
Before the cervical MRI systems mildly developed when I walked my dog and got a bit hot I would have little areas of tingling in my thighs and abdomen that would get worse when bending my neck forward.
So before the results of the cervical came back.
I again had to pay to see a neuro and again clinical was fine but he said " it sounds like Lhermittes ill send you for an MRI of your brain and cervical but I cant find nothing wrong with you " same as the previous neuro.

When the results of the cervical came back it was inconclusive and said " there are two areas in c-spine that seem to be in keeping with demylenation but could be artifact "

When I went for the brain and cervical a month later the radiographer done my brain and cervical and then brought me out of the machine he said "when was your last MRI and on what ? I told him on my cervical and he then told me that while I was there he was going to do my whole spine before I could ask anything I was back in the machine . They did the whole spine then brought me out gave me an injection and then did the whole thing brain ect again. I new then that this was trouble because they were doing this off there own back and not from request of my neuro. I was in the MRI machine for 2 hours!

When the results came back they were bleak. They read " Several ovoid t2 hyperintence/ t1 low signal lesions in the corpus collasum , basal ganglia , left external capsule and sub-cortical white matter"

I don't really have a clue what this means and neither does my GP except its MS.

Now I think that the MS was starting all them years ago with the muscle twitching 5-6 years ago. Surely all those lesions would not have appeared from as recent as April this year.
And I wouldn't have even thought MS if I hadn't have these sensory symptoms the old muscle twitch / spasm I would think its still benign and could well be I really don't know.

Tell me what you guys think of this epic post (sorry to anyone who took time to read it)
Do you think I had it all them years ago ?

Also as a bonus the NHS haven't got an appointment with a neuro for me until the middle of December
So looks like I will be paying to see one again -£250 !
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Re: was I miss-diagnosed

Postby Scott1 » Tue Sep 08, 2015 5:47 pm


Well, it might be MS. What other symptoms besides the ones you have described do you feel you have?

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Re: was I miss-diagnosed

Postby ElliotB » Wed Sep 09, 2015 6:43 am

MS is often hard to diagnose. And is often misdiagnosed, especially early on. Deal with what is rather than what was. There are many things you can do for yourself to feel better and stay as well as possible.

"Surely all those lesions would not have appeared from as recent as April this year."

Actually it is possible. Some people have MS without presenting any lesions and some people has lesions without symptoms. Additionally, lesions come and go over time.
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Re: was I miss-diagnosed

Postby centenarian100 » Wed Sep 30, 2015 2:48 pm

Obviously, no one can tell you anything definitive on a message board, but it sounds like you have never had a symptom or physical exam finding which is highly typical of a multiple sclerosis attack or multiple sclerosis "progression," so you may simply not meet the diagnostic criteria for multiple sclerosis.

You may simply have "radiologically isolated syndrome" which essentially means an MRI suspicious for multiple sclerosis without having a clear history of clinical symptoms typical of the disease.

A lot of clinicians would opt for watchful waiting in this scenario. Alternatively, you may have non-specific white matter lesions which are not typical of demyelinating disease (UBOs or "unidentified bright objects").

You seem to have a high level of anxiety about relatively mild symptoms. There is no reason to be concerned about 30 seconds of numbness or muscle twitching. These symptoms are almost always benign. Multiple sclerosis relapses by definition last at least 24 hours and are usually significant and can be corroborated by abnormal exam findings.

best of luck

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