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determined to find out what !!! is wrong

Everyday living
#1

I’ve just had the most intensely painful and longest lasting electric shock running from my neck to my left hand. I’ve had them before but they’ve only lasted a couple of seconds. This one lasted about a minute, although it seemed a lot, lot longer and as usual, it was so painful I couldn’t call out. That’s all I could do was cry ouch and I noticed that throughout, I couldn’t move. I. went to see my gp about a month ago about the spasms that have been increasing in frequency and intensity. She put me on 3 x 100 mg daily of gabapentin, which after two weeks, didn’t touch the spasms. So, she went through my paper records and put me back on baclofen 10mg x twice daily. I was previously on baclofen about 12 years ago, but then taken off it for some reason or other.

Anyway, to get to the point, while I was there, I asked what the initial thoughts of the neurology tests were on my symptoms. My gp told me that initially they thought it was ms, but when the MRI scan came back with no lesions and I had raised PROTEIN (I think that’s right) levels of the lumber puncture, also delayed response time from the optical tests, they couldn’t confirm categorically, so it was defined as undiagnosed neurological causes. That was 1993. I was discharged from routine appointments with the neurologist in 1999 with the closing comment that if things changed to get in touch. Since my gp has been treating me as if I was diagnosed with ms, I haven’t pushed for a proper diagnosis and it’s only now that I’ve discovered that pain is now classified as a symptom. Unfortunately for me, I just put up and shut up. Over the years as symptoms changed, I’ve developed coping methods such as sitting on my legs to dull the toothache in them, this was my constant companion. Also, after I reported initially to the gp about the various spasms in my arms, the excruciating electric shock that starts in your head where you say ouch and its gone and been told that’s all part of ms!! I haven’t been diagnosed with ms and by the sound of it I’m not going to unless I push, so after this painfully episode, I’ve an appointment with my gp on Friday and I’m asking to be referred to the neurologist. Sorry for the rant, I just need to se it down in black and white so it doesn’t sound like a stupid question. Thanks for listening and I just wish I had believed in myself long ago. You just think it’s all in your head or you’re blowing everything out of proportion.

#2

Lhermitte’s sign can cause electric shock type sensations when you bend your head downwards in a particular way. However, i dont think i have ever heard of anyone having it lasting in one place (arm) for a minute that is a lot of pain.

Either way you need to get it checked out, it might have nothing to do with MS, but be a trapped nerve or similar. I have had the worse aching/gnawing/ pain in my left arm before lasted 3 days and even had an EEG lol…it was so painful i thought i was having a heart attack.

I think its time you were reavaluated after having first symptoms 22 years ago, and its still ongoing.

Also lesions dont always show up on MRI.

Its not all in your head believe me. I went blind twice only for seconds but scary, had several relapses of SOMETHING, constant symptoms of MS, positive VEP tests, Lesions of my MRI (shown up twice), first ever MRI of brain showed a large area of high signal foci in the deep white matter of the brain, the radiologist reported it could have been a demylinating event but looking at my age it was probably that lol…(I am now 63, so that was when i was mid fifties). I had lumbur puncture which showed lots of O bands for MS, but sadly my blood test at the time showed inflammation, so that was a negative for MS, but it turned out by seeing a private doctor i had a co infection of Lymes which is why there was inflammation in my blood the private doctor diagnosed me with MS, wrote to my neurologist, and after review its now on my notes MS.

I have since been in hospital with Transient Epileptic Amnesia after several seizures over the last 7 years, and the lovely neurologist who saw me at the time, wanted me to be dealt with by the neuro who was dealing with my MS so i know its now on my notes. He also told me that we needed tests doing as seizures can come with MS too. After tests they are keeping an open mind it could be the MS, but i am not allowed to drive because there is still a chance it is TEA, however, i haven’t driven in several years as i forget where i had left my car lol…i had an amnesia attack whilst out shopping thankfully only last about 20 minutes but wiped out where i had parked the car lol…

Anyway go see your GP. Its time you were sorted out. No one WANTS TO BE SICK. xxx

#3

Hi goldengirl 63,

I’ve just typed up a reply to you, pressed send and I haven’t a clue where its gone!!! Not only suffering with symptoms of ms, methinks. Thanks for your support and I hope that you get some relief from your symptoms as well. I’ll update you on Friday. I’ve just been chuckling at blossoms jokes, that cheered me up no end. Long may the support within the forum reign. Look after yourself.

Babs

#4

[quote=“long term sufferer”]

Hi goldengirl 63,

I’ve just typed up a reply to you, pressed send and I haven’t a clue where its gone!!! Not only suffering with symptoms of ms, methinks. Thanks for your support and I hope that you get some relief from your symptoms as well. I’ll update you on Friday. I’ve just been chuckling at blossoms jokes, that cheered me up no end. Long may the support within the forum reign. Look after yourself.

Babs

[/quote] Blossom - you have helped another ms sufferer again!!

#5

Hi Long Term

I hear you on the long lasting electric shock - it’s difficult to explain to people (especially if you’re in the middle of one) - but you’re not alone . Going to bed triggered some of the worse ones, just settling myself and getting the pillow right and whallop! Husband saying “What’s wrong? What’s wrong?” and not being able to tell him until it eased off. The neck has to be in just the right position and I suddenly find myself plugged into the mains for way longer than could possibly be necessary.

I have started being very precise in my movements, after a while you figure out which directions/movements trigger the damn thing and you adapt around those, Miss Jean Brodie would be proud of my deportment. The other avenue is of course medication.

It might be worth re-trying Gabapentin (provided you didn’t have any significant side effects) at a much higher dose - I’m prescribed 2,700 mg (900 mg 3 x per day), although I take 2,400 mg as 2,700 mg is a step too far into Zombieland for my liking. I also take 20 mg of amitriptyline at night. The combination keeps a lid on things and I’ve not plugged myself into the mains for several months now.

At first the GP thought I had a trapped nerve, x-rays showed nothing out of the ordinary, first neuro appointment freaked husband out and I think the initial neuro was a little gob-smacked by the number of times I have been knocked senseless - I was and still am a tomboy - it was like the scene in Goonies when Chunk tells all. MRIs and VEPs later and they think it is most probably MS but are awaiting a relapse to confirm - my main neuro doesn’t like lumbar puncture, thinks the results aren’t clear enough one way or the other.

So - stick to your guns, insist on a neuro appointment and MRI to follow up and see what changes may or may not have occurred in the time since your last one.

#6

Hi long term,

If your last mri was 1993 ask for another. My first mri was clear and I was told told that it categorically was not ms. 2 years later a second mri showed up those pesky white spots and guess what - it’s ms!

Mri technology has moved on in 20 years. A modern machine may pick up something that the old one didn’t.

Good luck.

#7

Thanks all for your support and reading all your comments just makes me more determined to get an answer. Watch this space. I’ll update you all Friday. Just hope gp has some sympathetic bones in his body. I used to have what seemed to be a good system, but now perhaps I was too comfortable. I used to have a gp that used to be brilliant at just listening to all the stupid spasms and nerve pains and another that was great for getting tests done, but they’ve both left now, so asking to be referred will be new. Anyway thanks again for your support and stay well.

Babs

#8

Neuropathic pain - horrible and definitely a recognised symptom of MS. My MS nurse didn’t know that however. You have to be your own medical expert with this horrid disease (or find stuff out from people on this great forum).

#9

Hi, I identify with what you say about being presumed to have ms.

I spent many years with with a suspicion and then a 90% diagnosis of PPMS.

Several years later, PPMS was completely ruled out, then I was given another diagnosis which isn`t proven either!

I feel I will carry a big fat ? on my forehaed forever!

pollxx

#10

Hi poll,

I really feel for you. After six years of having tests (all wrong as they thought it was my back), and finally seen by neurologist, i my symptoms had all but disappeared. Trouble was, only temporarily, so I found out later, but enough for me to think that it was all in my mind. So when I was told the undiagnosed diagnosis, I didn’t push to have anymore tests after that and I suppose, because my gp’s were treating me for ms symptoms, there was no need. Now, after 29 years of the symptoms starting and 23 years since my MRI, I’m ready for the definite diagnosis. Wish you well in fighting your correct DX.

Good luck, Babs

#11

hi, when i was trying to get my tiny pension released, i was assessed by a doctor, she asked me what symptoms i was experiencing, i began by saying that my worst symptom by far was pain. she said that pain wasn’t a symptom associated with ms. i was fairly newly dx, i was in a lot of pain because i hadn’t been put on the right meds back then. i just burst into tears and couldn’t speak much after that. thankfully she was a doctor from the gp’s i was a patient of. i went storming in to see one of the doctors who knew about ms, armed with MS society literature about pain in MS. the dr i saw sorted it out for me, he thought it was laughable that the first dr wasn’t aware of the issue. yes we do have to be as knowledgeable as we can be, because we can’t always rely on medics to know what you need them to, although obviously it gets so much better once you see specialists.

#12

good grief LTS, that’s such a long time to be trying to get a dx, i’m sorry that you’re being put through the mill like that. i only had 1 year of mucked up nonsense, i can’t imagine what you’re dealing with. (((hugs)))