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sorry for bothering you hope you don't mind xx

New diagnosis and before diagnosis
#1

Hi all

Just a brief history about me. I’ve been struggling on now for years. It all started about 10 years ago with tingling/burning/pins & needles in hands & feet and over the years i have got steadily worse. A few of the symptoms i have are: Twitching eye, vision problems & flashing lights, muscle spasms in legs, chest & back, numbness in face, struggling to walk due to pain in legs,knees & hips, dizzyness & terrible fatigue, travel sickness that i’ve never been bothered with before, hand shakes, memory problems, stuttering, swallowing (sometimes i choke), cold hands & feet, always on the loo, Headaches that wake me from sleep they are so painful.

Theres probably more but i forget some…These don’t all happen at once and have just come on over the years

I have had MRI scan 7 years ago all that showed was an unidentified object on my left frontal lobe. Lumbar puncture was ok as far as i know. Have had 100’s of blood tests all levels are ok apart from Thyroid Antibodies which they are treating with 75mcg daily doses of Levothyroxine. Can’t say they do any good.

The last time i visited the doctor 3 weeks ago i was struggling to walk i told him i was on the verge of buying a walking stick it was getting that bad. I also took a list of all the symptoms with me thinking if he perhaps put them all together he might think ’ ah thats whats wrong’ but no… he told me i was suffering from old age :(… he said this whilst laughing…I am only 48 i don’t really think that is old…

He did some more blood tests for Rheumatoid Artheritis which came back clear but he has refered me now to the Rheumatology Dept on the 26th June which i think is probably a waste of time but i’m going to attend just so i can get another doctors opinion.

Anyway the reason why i looked and found this site on here this morning was because of what happened yesterday.

I was walking along the driveway and both my legs just ceased up. I could’nt move for about 10 minutes the pain was so intense and when i could move again i could not bend them and had to walk stiff legged until i could eventually bend my knees again.

Cramps in my legs woke me up last night and this morning they are really both aching. Now i could do with that walking stick.

I know it could be lots of other things thats wrong with me so i’m really sorry for posting on here.

I just wondered if it is worth asking my Doctor to test again for MS due to yesterdays episode…

Thanks

Debby

#2

Hi Debby,

You don’t have to apologise for posting on a forum - that’s what it’s here for!

However, I do think you’re quite right in your acknowledgement that your symptoms could be caused by a lot of things!

You may be surprised to learn there can be quite a lot of overlap between Rheumatology and Neurology, with it not always being obvious which one to pursue first. So Rheumatology is a reasonable first avenue. I would exhaust all enquiries there, before you tell your doctor you’re still not happy, and ask about next steps.

In general, they only pursue one line of enquiry at once anyway, otherwise it gets too confusing, so you probably wouldn’t get a Neurology referral while Rheumatology have not yet finished with you.

Most GPs also have a horror of Googlers and self-diagnosers, so it’s probably not a great idea to go to the doc’s and say: “I think I have MS”, and insist on being tested for that. You are more likely to earn yourself a badge of “health anxiety” or “neuroticism”, by trying to tell the doctor his/her job. Instead, wait 'til Rheumatology have finished - assuming they don’t find anything - and then say, tactfully: “OK, Rheumatology didn’t find anything, yet I’m still having these unexplained symptoms. What else can we test for?”

I would say that, whilst the most common form of MS (85%) is episodic in nature, the episodes last days, weeks, or sometimes even months, not “10 minutes”. So legs being uncooperative for just ten minutes wouldn’t be typical. Yes, MS can and does cause cramps, and I’m occasionally incapacitated for about 10 to 15 minutes with those. But you’d surely have known if it was cramp, although you do say you have experienced cramp in the hours since.

I’m a bit concerned about the “unidentified object” even though it was seven years ago. Did they just leave it unidentified, and make no further attempt to establish what it might be?

The characteristic damage caused by MS would almost certainly not be described as an object. Instead, the report might have said something like lesions, possible lesions, or inflammation. In your place I would want to know more about why I had an “object” in my brain, whether it is still there, and whether it could be responsible for present symptoms.

I don’t know very much about possible complications of thyroid problems, but I believe they can include cramps and joint pain. Is it possible many of your symptoms are caused by a condition you’re already known to have?

Tina

#3

Hi

Thanks for the advice Tina. Yes i think i will just go down the Rhuematoid route for now see if they can discover anything different from my doctors old age diagnosis.

The neurologist said to me there is a UFO on your left frontal lobe… I asked what that was and he just said an unidentified floating object and i did joke ‘oh have you found my brain’ and that was that its never been mentioned again. I presume its still floating there. I will mention this when i go to rhuematology.

Yeah i do know about the cramps i get it all the time in my legs calves back and toes the back one is more like a spasm. My legs though yesterday i would describe as numb like they wern’t there then they came back with cramp/spasms… It was weird.

I know the thyroid can cause lots of symptoms and my general thyroid tests are in the normal range.

My thyroid is producing very high thyroid antibodies.

I’ve tried everything to try and reduce these antibodies a total change of lifestyle to try and help myself. I eat healthly, am gluten free and regular walking & horse riding as excercise and i take levothyroxine. I do a blood test every 6 months and they are always high and i don’t feel any different for my healthy life style changes.

Thanks again Tina I hope you all have a good day its a very good site ive have had a look round while i’ve been here.

Debby

XxXx

Ps if i ever find out whats wrong i’ll pop on and let you know xx

#4

Hi Debby,

I agree with Tina, what sort of neuro would say UFO and not fully explain it - I suppose he was trying to be funny!!! I am 48 too and am not actaully diagnosed yet but have a lesion on spinal cord. I have spasticity in right leg which makes bending right knee difficult. I feel stiff but not actaully in pain. I was checked out by rheumatology for Lupus and sjorgrens etc and all was clear there. Had a Lumbar puncture also which was clear. I am also on thyroxine 100mg/day too.

Neurology I feel is sometimes a guessing game - it is with me anyway. I am about to have my 3rd MRI in 3 years on Friday. Anyway you seem to be moving in the right direction for answers which I hope that you get soon.

Moyna x

#5

Hi Debby.

Tina and Moyna, have said more or less what I`d have said.

GPs cant test for MS.......thats why they refer us to neurologists, if they supect a neuro problem.

The road to a diagnosis can be long and stressful…I know that as I am still on mine, afer being wrongly diagnosed with PPMS for several years.

What I do know now, is that I dont have MS, plus other things i`ve been tested for over the past 15 years!

I have been given a label of spastic paraparesis/cause unknown.

My poor brain has been over-loaded with all sorts of info and there has to come a time when we let it rest…I kind of have!

luv Pollx