hello

[debmin40]

hi derby

 

Big hi from me too!!

 

Like you everything kicked off big style for me following my 40th!!(nice pressie!!) I also was only diagnosed recently end of April. I have all the same feelings regarding the guilt and wanting to be a proper mum (my youngest is 4)

I dont know how much help i can be as i am asking all the same questions you are.....will it get better(my numbness has lasted 2 years now) the fatigue never seems to give up!! The balance etc just seems to be getting worse.

 

I started on a dmd a week ago so waiting to see how that helps!

 

 

 

Sorry i havent been much use but just wanted you to know i understand exactly how you are feeling and what you are going through!!

 

I also have no one really in the "real world" to talk to about this so this forum is a godsend!! All the people on here are very helpful and friendly so youve come to a good place lol

 

look after yourself

 

debbie xx

[derby42]

Thanks for that deb it meant a lot.

[derby42]

Im feeling very down. Sorry to complain again but things are worse if anything. Still lying down most of the time. Babies still downstairs. Husband worn out. With the physio sayin he thinks its a disc now i dont know if im coming or going. Has anyone seen a spine mri report? Is it usual for them not to mention discs or anything other that cord?

[SteveB]

Im feeling very down. Sorry to complain again but things are worse if anything. Still lying down most of the time. Babies still downstairs. Husband worn out. With the physio sayin he thinks its a disc now i dont know if im coming or going. Has anyone seen a spine mri report? Is it usual for them not to mention discs or anything other that cord?

 

Hi DerbyI work in Orthopaedic triage and from reading your comments on this thread you need to get the lumbar spine scanned. Have you been referred to Orthopaedics? If you have any any altered sensation around the perineum- 'saddle' anaesthesia, or altered bowel or bladder habits, these are 'red flag' symptoms and you should be fast tracked for a scan. If that is the case I would suggest you contact your GP and he/she would I expect fast track you to a spinal surgeon. The problem of course is that nerve entrapment symptoms can mimic MS symptoms, but that's no excuse for not scanning to confirm or rule out a disc prolapse or other nerve entrapment syndrome. MRI of the spine in very simple terms looks at segments in different planes and with different views/exposures dependent upon what is being looked at. Your MRI of the spine when diagnosed with MS may not necessarily have extended to your lumbar spine level. Your symptoms could be the MS but you will never know unless the lumbar spine is scanned. Hope that helps. Steve

[derby42]

ive had my whole spine scanned apparently but the report only mentions the spinal cord so i dont know if the discs were even looked at. Is this usual does anyone know? Obviously they saw that there was no abnormalites to the cord and im assuming that they would know if a disc was pressing on it but the spinal cord im told finishes where the lumbar spine starts so im wondering if they didnt look at that part of the scan and therefore may not be aware of disc problem there. Ive been trying to find a report on the net to look at but i cant find one that doesnt mention discs. Im confused that mine doesnt. In fact it says very little as i posted before. Has anyone else had a spine mri that could advise me please? I know im a pain but im in a state.state.

[Marina]

I've got lumbar spinal stenosis which is a narrowing of the spinal canal and which in turn puts pressure on the spinal nerve (a form of root nerve entrapment) causing all sorts of pain, often eye-popping pain in my case. It was first noticed in an x-ray some some years ago, and marked as suspected spinal stenosis as they weren't 100% sure about it. I had all the symptoms but MRIs didn't seem to show it. An x-ray of my pelvis did eventually show it, but only my pain specialist could detect it in the x-ray. Then I had another spinal MRI when it finally showed more clearly a couple of years ago.

 

Before that and before being finally referred to my pain specialist, I must been sent to every kind of specialist there was for my back, and each one couldn't find anything to do with stenosis or anything particularly glaring, and none offered any form of treatment other than to say "Just keep taking pain killers," which don't touch it... They all found something wrong with discs, with each specialist saying it was a different disc... One even suggested surgery to remove a disc, saying it might help my lumbar pain but not the associated leg pain; needless to say, I didn't have the surgery.

 

I've had this stenosis for years, but it also took years for it to be confirmed by x-ray or MRI. I've also got a number of degenerated lumbar discs and mild osteo-arthritis in my spine, and osteoporosis although this causes no pain. My pain specialist now gives me steroid or other shots into my spine every so often (under sedation, as I'm a big baby when it comes to needles!). They help a bit, but not 100% in my case. Both my neuro and pain specialist said surgery could help but they'd rather avoid it as it's rather major.

 

I don't mean to sound demoralising about it, but sometimes it seems it can be just as difficult to DX a spinal problem as it is to DX MS...

 

As Steve said, some of the pain I get, mainly the thigh one in my case, mimics my MS thigh pain, so it can be difficult to see the wood for the trees. Also, one can exarcerbate the other, adding further confusion into the equation.

 

Just for the fun of it, I now have cervical spondilytis too... more recently confirmed by an MRI. I'm due to go in for jabs for that too, similar to those I have for my back.

 

One final thing. It did seem that in my case, it was difficult to see the stenosis on MRIs. Eventually they saw something, but still couldn't tell what it was. It was years before the most recent MRI made it a bit clearer. So I'm afraid it might take some time trying to find out what's wrong for you...

[derby42]

Thanks for that . . It must've taken you ages and i do appreciate it. Yes it seems to be very confusing but my physio seems to believe there is a disc problem. I know that ms doesnt usually cause trouble in pregnancy although it can do but i was 7 months pregnant when this started and i had no other symptoms at the time. A few weeks after however ms symptoms started quite badly so im thinking that this wasnt in fact a relapse in pregnancy. Can i ask if any of your disc problems or back problems were reported on in an mri spine scan for ms or was it purely about cord abnormalities? I find it very hard to believe that there is nothing wrong with my back at all as i said before ive worked in care work for ter 20 years and ive had 5 quite large babies and im now 41. Thanks again marina.

[derby42]

a few weeks after the baby was born i should've said. Then the ms symptoms started up.

[angeltess]

Hi Derby, I can feel your frustration. You just want the so-called experts to get together and get to the cause of things. It's so annoying when they don't collaborate to get to the bottom of what's going on. It's as though because you have a 'condition', all the others can wipe their hands of it; they're off the hook. The body is so complex - surely a more hollistic approach would help the sufferer. The money spent on medical science, not enough, but not unsubstantial either, yet a simple problem of communication between specialities must have caused so much suffering.

 

Just my cynical opinion.

 

In fact, spend more money on the logistics - what's the use of advanced medical research if simple communication is so flawed.

Edited 31 Aug 2011, 9:55 pm by angeltess

[Stumbler]

Jan, you're so right. How many times, in all walks of life, has a problem been exacerbated because two people have not talked to one another!!!

 

[derby42]

i woke in much pain at 5 am and just called the physio who says its fine after treatment. Not very fine for me though i couldnt walk anyway but this is silly and i dont even know whats wrong with me! I'd still really appreciate it if someone could shed some light on the spine mri situation though. And yes jan i too agree with you.

[SteveB]

Hi DerbyJust to let you know I received your message and tried to reply twice but the message deleted itself when I tried to preview it before sending. I will try again tomorrow night. Seems to be an issue with my PC. Steve

[derby42]

thats fine steve thanks. My phone does that all the time.

[Marina]

Can i ask if any of your disc problems or back problems were reported on in an mri spine scan for ms or was it purely about cord abnormalities?

No, they weren't seen in the MRIs done for MS as neuros tend to look for things to do with MS rather than anything and everything. Although my neuro did mention that there was something lower down in the lumbar area which he couldn't be sure if it was a lesion or something else, but said it was unlikely to be a lesion as they're not usually that low down.

 

Other spinal MRIs were done before MS was even suspected in me. They were done by a rheumatologist, then by a spinal surgeon, and also by another type of back-related consultant but I forget which now. All of them saw problems with degenerated discs, even if each one said it was a different disc than the other one said (!), but said my problems and pain weren't due to the disc degeneration (or other back conditions that I also have). These MRIs came after the 1st x-ray of some years ago that suggested I had narrowing of the spinal canal (stenosis). But MRIs get more sophisticated all the time and more recent machines are better able now to pick up things that older ones couldn't.

 

My 2nd x-ray, which my pain specialist (who I've been seeing for years) asked for as I was having acute hip and groin pain too and was worried I'd need a new hip or something, showed something in my pelvis or very lower spine that the pain specialist said was highly indicative of spinal stenosis. He added that if I had walked in to see him and didn't have MS, then my symptoms would be a prime example of a classic case of spinal stenosis, but that having MS can confuse things as both conditions can affect the same parts, such as the cramps/spasms I sometimes get in the front of my thigh, or that one can exacerbate the other.

 

When I had my last spinal MRI for MS (last year, I think), I asked them to extend it to the lumbar and coccyx area so that I could have the MRI to show to my pain specialist as he was already convinced I had spinal stenosis from previous x-rays and history. From that MRI, he was finally able to see the stenosis more clearly. I think my neuro did too, as he knew we were trying to look for it, but it's not his field.

 

When I was first referred to a pain specialist for my "mysterious" back problems, having been to every other type of back specialist who couldn't find a cause for it, I thought he'd be useless as I wrongly thought pain specialists just give you pain killers etc without really knowing what they're treating. I wanted to know what was wrong, not be given pain killers or other similar treatments. However, I was wrong, he was the best person I could possibly see. Many pain specialists are anaesthetists (or used to be), so they know every nerve in the body and it's their job (or should be) to know what might be causing pain. Without him, I doubt I'd ever have had the stenosis confirmed.

 

If you're not getting any joy out of other doctors, might you be able to get yourself referred to a pain specialist?

[derby42]

thankyou so much marina. I did reply to you at length but my phone turned the page off again. I will look into a pain specialist if the physio gets nowhere with trying to see my scan. Im not in too much pain though with my back its more that my motor nerves in my leg arent working so im losing muscle. My neuro said that thats not ms though. He said ms doesnt do that but i thought it could. I get weak wobbly legs and i know thats ms when it starts but this is lack of muscle control its wierd and scary. If this is ms then why did my neuro say that ms doesnt cause muscle wastage? Im scared but he's a consultant and should know surely. Thanks again for your reply at least i know that its likely they didnt even look at my discs although the neuro knew that it had been suggested by my chiro.

[derby42]

can i just say thankyou to all of you. Things are still no better and my mum in law is going back today so we're going to be left to cope now but my husband is totally amazing and without him i wouldnt have my children because they'd be taken away from me. Im still praying that things improve and i have the nerve conduction tests to look forward to so at least something is being done. I just want to say that i know ive moaned and gone on a lot but your patience and replies to me have been keeping me going. When i lie here and read your responses it means that im a bit less unpleasant to live with or i cry a bit less or i feel a bit more hopeful that things will improve for me and my family. Thankyou all.

[angeltess]

Derby, I'm happy that you sound a bit more positive. This forum is great for that. The times I've ranted, and you're right, I keep thinking I'll be told to put up or shut up, but no-one's done that yet. I sometimes get advice from unexpected angles, but you know, it's usually pretty sound advice and keeps your mind more balanced. You have a good husband there too - and hopefully soon you'll be able to enjoy your new family like you should. Thinking of you, Jan. xx.

[derby42]

Thanks jan. Im in bits at the mo cos her lifts just come so i cant say much. Thankyou.

[Ligs]

Hi Derby

 

I'm newly diagnosed myself with MS, infact only last week but I was fully expecting it so not too much of a shock. I did a lot of research into various conditions whilst I was in Limboland and whilst I'm no doctor, having seen your symptoms with your foot, it really sounds to me like you're suffering from Charcot Marie Tooth (CMT) disease rather than MS. My Grandad had this and I looked into it thinking perhaps this was what I had too. It mainly affects arms and legs/feet and symptoms include hammer toes, toe curling, foot drop, very thin calves/muscle wastage etc most of which you seem to have mentioned. Have a look on their website and see what you think, might be something worth mentioning to your doc next time you see him. Good luck x

 

 

http://www.nhs.uk/conditions/Charcot-marie-tooth-disease/Pages/Introduction.aspx

[derby42]

Thanks for that. . It did occur to me but its definately ms i have although i could have that too i suppose but id be really bloody unlucky if i did eh? The thing is it hasnt started slowly and got worse. If anything its very slightly better than when it started. . My toes that is not the muscle wastage which of course has worsened the longer its gone on but the toes and foot itself are very slightly improved. At first my foot bo

unced off the floor when i put it down but it doesnt now and although the sensation is altered it at least has sensation. The other thing that i remembered was when the toes first curled under. I was 8 months pregnant and on all fours cleaning the bathroom floor and my back was really hurting and when i stood up my toes shot under my foot so badly that i had to sit and uncurl them. It was a sudden thing but now i just avoid hard floors and keep my footwear on. I might be wrong but although it sounds right i suspect it isnt that but thanks for taking the time.

[derby42]

chris you mentioned that postpartum relapses can be dramatic. Does this mean also that they can last longer? I dont know if this is a relapse or my back problem yet but i just thought id ask. My symptoms did respond to the steroids i had but this leg hasnt changed at all. Its been going on for just over 6 months.