Help needed new here: been suffering with strange... - LUPUS UK

LUPUS UK

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Help needed new here

audreypamela profile image
audreypamela

been suffering with strange symptoms for 16 months. It all started with a buzzing in my feet which quickly travelled up my legs as akind of parasthesia. Shortly after fasiculations started initially in my legs but now all over. My worst problem is muscle cramping almost like a spasticity in my upper abdomen. Initially this was sporadic but now pretty much all the time. Feels like an MS hug but I dont have MS. Allmy blood work is normal. MRI of spine is normal. I have had 2 nerve and muscle tests which were normal. I have been seen by 2 neurologists and have now been discharged from neurology. One neurologist stated that this was likely health related anxiety. My symptoms are causing a level of anxiety but my anxiety is definitely not causing my symptoms. Any input would be gratefully received.

16 Replies

Hey I have muscle twitches all over !

Do you have any other symptoms x

Hi Buckley. Sometimes I feel as though I am plugged into a mibile phone on vibrate. Lots of aching in my legs. Just so frustrating to not have a diagnosis. Frel I should have had a brsin mri and maybe a lumber puncture. Looking at your posts I feel we may have similar symptoms.

Medical tests can never reach the human body particularly at the beginning of a problem or neurologically. I’m afraid you may have to wait until another symptom shows up before it leads them in a direction.

musculoskeletalkey.com/lowe...

Please read this article to the bottom. a lot of it at the top does not apply to you.

It sounds to me as if you have a single lesion or maybe two mid spine and I would give you a visual evoked potential if I was your doctor. If it was negative I do it again in three months but I would treat the symptoms regardless.

Keep using your legs as much as possible. Try to walk but slowly and carefully every day. Until the next symptom shows up you’re kind of stuck. If you have not had a visual evoked potential please ask for one.

Doaty💛

Thank you for that. Would my gp arrange that or would it be a neurologist.

Neurologist.

Thank you for your help. One question. Would lesions not have shown up on mri

Sometimes not if they’re small on the spine. It depends on the tech (how good), how big they are, and patient positioning.

Thank you. You are obviously very knowledgable. Just one more thing sorry. My emgs which werr 6 months apart showed occasional polyphasics both times. No one explained what that means or if it was relevant. After the last one the neurophysiologist stated that there was no significant neurogenic myotonic or myopathic changes ruling out anterior horn cell disease. In english please.

Sorry about the time delay.

‘No significant’ can mean we don’t see it or it’s so minimal it doesn’t fall in our labs criteria for ‘minimal’ *on this test*.

Horn cell disease is one way of saying there’s nothing at your spine that would suggest there’s a reason for your symptoms yet. (There may never be. That might not be the problem.)

If you think of direct current of electricity there will only be one response on the stimulation. A polyphasic means there are a few times your muscles/nerves responded more than once to just one stimuli.

This is a rule it out test. It also is not good at picking up very early stages of an issue.

So at this time you’re in too early of a stage for a machine to show your issue or they’re looking in the wrong place.

What about your cerebrospinal fluid? How did that look?

There a 5 tests done for MS. We need your spinal fluid results and your visual evoked potential.

I don’t think they’re saying the EMGs are inconsequential. Right now they don’t show enough to give a definitive answer. Before I’d put it off on anxiety I need CFS and the VEP (visual).

No csf done as yet. Was worried about als but they have said not. Hopefully that is the case

Do they do tensilon tests where you live? That will usually rule out als.

Never been mentioned. Does it sound like als as a possibility to you

Well we aren’t in the same examining room. It’s hard to say. I’d ask your doctor so you could take that off your mind or begin to get the medication. I’d say in all my years I’ve never seen a neurologist place these specifics in the anxiety category. It is entirely possible though since I’m not looking and touching your body and have not seen or done your tests.

Thank you. They have assured me it isnt but its there at the back of my mind. Been going on for 16 months now just need some answers

I understand. Sending you strength and peace💛

Thank you

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