Lots of Sympptoms ??

New diagnosis and before diagnosis
1

Hello to one and all.

Just found you on the Net and was wondering if i could share with you good people some weird symptoms i have been suffering for the last 7/8 Months.

Yes, i have visited my GP who sent me for an MRI scan of my left Shoulder and my Head a week ago.

Had a phone call from the Receptionist at the doctors saying, my doctor wants to see me, but not untill she returns from a 2 week holiday, She booked me in for the 28th December.

Obviously for the results of the MRI. Cant be that inportant if she is keeping me waiting untill after Xmas.

Ok, I am a 46 year old Normally heathy male. For the last 7/8 months now i have been experiencing some crazy goings on with mostly the Left side of my upper body.

At first i thought i was having a stroke. (Not yet ruled out) maybe a TIA?

Went to the Doctors, she sent me for an MRI, also she has booked me to see a nurologist in early Jan 13.

Wont know anything untill she gets back. Very Frustrating!

I would just like to list the things that i have been experiencing, and maybe get some feedback.

Here goes! Left ear, Left Nostril, Left side of chin, Left eye socket, Left cheek, Left side of neck, Left shoulder, Left arm, Left hand, All the Fingers & thumb on Left hand…

Numbness and Tingling with all the above.

Sharp pain on side of head (Left).

Forgetting things like i have never done before, (Seems just Short Term loss).

Dizzyness.

Heavy heavy nightime sweats.

Left leg keeps giving way, as if someone came behind me and collapsed my leg by pushing their knee into the back of my knee…

Terrible Cramps in calfs and feet, especially at night.

Hot burning pain in Left shouder blade (constant).

I have begun to stutter and mix my words up (ocasionally)

Speech somtimes a bit Wonky.

My dear Mum passed away from a condition called FTD (Picks)

And my uncle passed away at an early age, he had MS, last part of his life was spent in a wheel chair.

Do any of the above symptoms sound anything like MS.

Looking back on my family history, most passed away from Strokes and Heart attacks.

Its the waiting thats a bit worrying, not like i can just jump the queue.

Many thanks for looking. Matt.

2

hi matt

i do have ms and experience some of your symptoms but you need to wait and see what doc says and you may need a referral to a neurologist who can give you more answers as to whats wrong

i believe there are many things that can cause problems and may well clear up for you

i hope you get good news when you see doc and you don’t go down the wait and see what happens next route

take care

baz

3

Thanks Baz, neurologist is booked in for Early Jan, Its a bit of a worry though, especially when your whole left hand has hardly any feelings in it at all !! Left handed Painter/Decorater !!!

Take care, atb for 2013, Matt.

4

Hi Matt, and welcome to the site

One of the biggest challenges of neurology is the fact that there are literally hundreds of conditions that have similar symptoms, so while almost everything you describe is often found in MS, these things are also found in lots of other conditions too so I’m afraid symptoms alone often don’t narrow things down. I would say though that, while the one-sided nature of your symptoms is typical of an MS attack, there is an awful lot of your body involved for it to be typical. For example, the face / head stuff could be inflammation of the trigeminal nerve, but the shoulder / arm / hand stuff would have to be a lesion on the cervical spinal cord, the lower leg cramps would be more likely to be a lesion lower down the spinal cord, the dizziness could be a lesion in the cerebellum or the brain stem and the speech issues would probably be lesions in a speech area of the brain or the brain stem: and that’s a lot of lesions all at once. I’m not saying it couldn’t happen - it can and does - it just makes it less likely.

I think you should probably take some comfort from the fact that the GP isn’t rushing you off to hospital: clearly whatever’s going on isn’t an emergency. The timing really sucks though! You’d at least think he/she could have left info and instructions with a colleague?!

I just re-read your post and saw that this has been going on for 7-8 months. If your list of symptoms has built up over that time, then MS is much more likely (but there are still lots of alternative explanations). It would be really useful if you were to put in some time to preparing for your Jan appointment. I’ll copy and paste a thing I did ages ago about first consultations: it’s just my suggestions, but hopefully some of it will prove useful. It sounds like your family history may be more important that it is for a lot of people so please make sure the neuro gets a decent level of info about it - the more the neuro knows, the more likely it is for him/her to get the answer right.

I hope it goes well, and that you get some answers asap.

Karen x

These are the things that I think help at a first consultation:

No.1: Be prepared! (It’s always best to have something and not need it than need it and not have it!)

  • Be able to tell the neuro your medical history, any neurological illnesses in your family (if asked) and your symptoms in a succinct, objective manner. Prepare a list / aide memoire to help you. Do not prepare lists with loads of details over loads of pages: the neuro will most likely only want a topline summary / headlines. If they want more info, they’ll ask. A good list will be chronological and focus on the main symptoms. For example, April-May 2009 (recovered): optic neuritis; September-December 2010 (some recovery): incontinence, spasms in legs, shooting pains in legs; June 2012 (ongoing): terrible fatigue, deterioration in walking, some cognitive difficulties. If this is the first time this kind of thing has happened to you, then stick to a simple explanation – when it started, what the main symptoms have been and how they progressed, if anything has gotten better since. For example, March 2012: woke with tingling in legs. Developed to legs, torso and back over 2 week period. April: extreme fatigue; tingling areas now buzzing, itching and hypersensitive too. Now: all of the above plus blurry eyesight.

  • Take a (short) list of questions if you have any.

  • Take a list of symptoms that you are struggling with so the neuro can advise re meds or therapy.

No.2: Do not hand over lists unless you really can’t talk through things yourself. If you do hand something over, do not speak until the neuro has finished reading it (or asks you a question - once you’ve answered it, be quiet again if there’s more to read). If you are planning on handing anything over, keep a copy for yourself.

No.3: Be honest. Do not exaggerate and do not play things down.

No.4: Take someone with you if you can. It is really helpful to have another pair of eyes and ears there so there’s a better chance of remembering what happened and what was said. The other person can also help to jog your memory if needed.

No.5: If the neuro’s taking notes of what you’re saying, give him enough time to keep up and get things written down properly.

There really is nothing to be concerned about. The goal of an initial consultation is for the neuro to work out what the most feasible explanations are for your symptoms and to order suitable tests. To do that, he/she needs to know your history and the results of a clinical exam. The only bit that you can help with is the history. So that’s your contribution: to provide the information that the neuro needs. This isn’t too hard - after all, it’s all about you! A list / aide memoire can help to keep you from waffling or missing out something important though.

5

A Big Big Thanks Karen, Will defo follow your Instructions for when i eventually see the neurologist.

Was thinking of writing everything down before my appointment, as the old brain matter is not like it used to be!

I am also phoning my Gp Surgery today to find out whether i can be seen by another Doctor for my MRI results.

Thanks once again for taking the time to reply.

atb for 2013, Matt.

6

Hi, Following on from the above, i have now been dianosed with MS. Three Plaques were found on my brain.

My Nurologist guy has put me on a five day course of Steroids since Friday 31st May, as my left leg from toe to hip has no feeling in it. Feels numb, and as if its on fire deep inside.

I asked my Wife to feel my leg to see if it felt overly warm to her. My wifes hands are mostly always cold,and when she touched my left leg, it was like 1000 volts of shock shooting through it. Anywhere she touched on my left leg, the pain was unbearable, without sounding crude, my left bum cheek, my left testicle, and my Penis are also completly numb.

I asked my Nurologist if he had heard of this electric shock pain when touched with something cold and he said he had,but that was it…I suppose i was bombarding him with lots of quick fire questions.

Has anyone else heard of this? I am four days into the steroids and there is no difference in the numbness or Pain from a cold touch.

Thanks.

7

I’m far from expert but the pain sounds like fibromyalgia?!! Fibromyalgia - Symptoms - NHS

8

Not sure where my post went but I said the pain sounded a bit like fibromyalgia?

9

Sorry to hear about the diagnosis, but at least you know what’s going on at last.

A spinal cord lesion can make our skin anything from hypersensitive through to totally numb. It can also completely confuse different sensations so that smooth things feel cold, touch feels like pain, etc. Unfortunately, there isn’t a whole lot that can be done about it other than taking neuropathic painkillers (e.g. amitriptyline, pregabalin, gabapentin) which calm down sensory symptoms and hoping that our body will sort it out given some time. Steroids can speed up the time it takes to get into remission, but it can take a while and they don’t always work. They do, however, stay in our system for many weeks so it’s difficult to say how well we would have recovered if we had/hadn’t taken them.

Hopefully you’ll notice a difference soon, but recovery can be a very slow process: it’s only after a year or more we have to start accepting that we’re probably as good as we’re going to get from that attack.

Please ask your GP for a neuropathic painkiller if your neuro didn’t prescribe anything and you think it might help.

Also, in case no one’s already told you, you need to tell the DVLA about your diagnosis (they usually put us on a three year renewable (for free) licence) and then your insurance company about what the DVLA say. You should also have a look at any paperwork you might have that might have a critical illness clause (e.g. your mortgage) - MS is a payable condition.

I hope things get better soon.

Karen x

10

Thanks, will take a look.

11

Thanks Tricky123… And Thanks again Karen for your helpful Information.

12

I did mention to my specialist that i thought i may have CRPS. He straight away said No you dont have that.

So why is it that whenever my leg is touched by somthing cold, i get instant stabbing/electric shock pain.

For example, i was hosing the yard yesterday, i was wearing a pair of shorts, and each time a drop of water splashed back at me and hit my leg , it was like being stabbed with lots of needles…Is there a name for this condition?

Sorry if i am not making much sense here, but this MS has taken me by supprise and its very scary stuff. I was a fit and healthy man six months ago, now i feel that my body is completly falling apart at the seams !!

Already fallen twice in last three days as my leg cant seem to take the weight of my body, its like i have to really concentrate when moving around. No more up and down ladders for me! May even have to consider rehoming my Two dogs as i cant seem to walk very far either.

Scary stuff.

13

I’m afraid that the name for the condition is MS - it causes all sorts of weird stuff, some of which has specific names, but very often not. What you’re experiencing with the cold/pain thing is a sensory symptom probably caused by damage to your spinal cord. It’s not quite the same, but I’ve previously had months of being unable to touch anything smooth because my body was interpreting “smooth” as “ice cold” - which may not be a big deal for a lot of the time, but is a right pain when you have leather sofas! Thankfully it seems to be wearing off now, as many things do if one has RRMS, but waiting for our bodies to work out how to deal with stuff can be very frustrating and seem agonisingly slow :frowning:

Make sure and speak to your MS nurse about anything that might help you in general, e.g. physio, meds, OT. It’s amazing the difference the right support can make.

Kx

14

Karen, I was interested in your comment re the mortgage, did you mean if you have critical illness cover rather than the mortgage itself?

15

Some mortgages come with a critical illness clause - just depends on what mortgage you took out and what options were included. Always worth a look, just in case!

Kx

16

Thank you, I’ll take a look, wouldn’t that be fab! x

17

Hi Paddy, what you have said about your leg is very much the same as mine. Mine is all down the left side, bottom of foot really numb and uncomfortable. Have an area on the left side of my leg, above the knee, that my daughter keeps proddingq as it makes me jump!! The way you described your leg sounds really similar to how mine is now. I have not had any treatment for this yet. I saw my nurse last wk, my leg had only been like that for two wks up to then. I’m seeing her again on the 19th June where we will discuss treatments if there has been no improvement. So good luck, hopefully your treatment will work x

18

hi

dont rush into rehoming your dogs because you may well recover some or all of your mobility.

i’ve seen dogs being walked by someone in a wheelchair and an old guy nearby takes his dog out on his scooter.

chin up paddy, you’ll get there

carole x

19

The nurologist put me on a 5 day course of Medrone Steroids. Finished them 3 days ago, and today i feel like crap.

The feeling is still there, also complete bottom of my foot, feels like i am walking on Razors. My whole left leg is still Numb.

Going back to see him in two weeks to try another Tablet, failing that he said he would give me an Injection.

ATB, Paddy.

20

Thanks Carole, just feeling proper down with this MS. Dogs should be fine.

ATB, Paddy