Hi I am currently in limbo land and after seeing a second neuro I have even less of a clue as to whether I even have ms. Clear brain and spinals, been offered a lumbar puncture but the way it was put to me was to riule it out 100%. Recently I’ve had really severe pain in the pelvic part of my body, like constant labour pain. My second neuro gave me a diagnosis of chronic pain syndrome. One thing that is really playing on my mind is that I get tingling/ neuropathic pain in my left foot on/ off but quite often. Today I have my menstrual cycle so it’s pretty bad but then in a few days it could go only to then come back. My right foot gets it a little but never as bad a my left. I’m asking in the ppms part of the forum as I’ve heard that with this ms it tends to get one side of your body more. Hope you guys don’t mind me asking but if this was ppms would the tingling etc in this foot come and go or would it remain constant? I don’t have any weekends with this, can still walk the same. The neuro I saw didn’t seem to think having a spinal tap was overly important as he said due to my mris being totally clear it more or less rules ms out but when this problem comes in my left foot I have this nagging doubt. Any info greatly appreciated as I want to make my mind up about the spinal tap but just not a clue x
Hi Jojow and welcome to the site. I don’t know the answer to your question with regards to your foot symptoms being ms related. With ms the nerves play up anywhere in the body, at the moment my legs and hips are playing up. My MRI wasn’t clear, I had brain lesions but they weren’t enough on their own to give me a diagnosis so I had to have a Lumbar Puncture. I won’t lie and say it’s nothing, but I’d have no hesitation allowing them to do another if they needed to.
It’s only a very thin needle inserted, left for a few moments while they wait for a few drops of liquid to come out, then they remove it. They do inject a bit of local anaesthetic which burns a bit but it’s not the nightmare procedure some people think it is. You have to decide for yourself whether it’d be worth it to get a proper diagnosis. Mine was done to “rule it out” but it gave a definite positive for ms. I know some others have shown negative but they’ve still got a positive diagnosis. It’s just one of those funny illness.
What I did want to say is that pain, even neuropathic can be caused by many things including a slipped disc or wear and tear. The other point you raised about PPMS mainly affecting one side is also incorrect, we don’t relapse and go into remission, our symptoms get worse over time, each of us have different symptoms and varying severity.
This doesn’t mean you’re not welcome here, please don’t misunderstand me. You need to keep pressing for treatment for your pain. No matter what your diagnosis is, they shouldn’t be leaving you with no treatment for it.
Good luck and take care.
Cath xx
Hi cath thanks for your advice. I’ve been on the site a while now but with symtoms that keep coming and going I am worried sick yet again. I wasn’t going to bother with the spinal tap and was just going to focus on symptom management after a diagnosis of only chronic pain syndrome, however my left foot problem returning today always brings me back to the worry of ms. My reasonfor posting on the ppms site is because in my understanding (which is prob very little) is that if in any chance this was ms that rrms wouldn’t keep causing me the problem in the same foot. That’s kind of what I meant also that if it was ppms would this left foot problem be more likely to be a permanent thing rather than something that comes and goes? Orry if I don’t make sense. I know you guys go through a hard time but it is so frustrating not knowing what the heck is wrong with you, being in pain and worrying what the heck it is. I’ve been doing well putting it all to the back of my mind lately and just taking all my meds but with a few really painful things going on and now my foot doing this yet again, I’m now starting to worry like crazy agin. Plus I’ve kind of got to decide soon on whether to have the spinal tap or not. Guess it’s all playing on my mind. One more question cath when you say the tap was done to rule it out, is that because the neuro thought you didn’t have ms? As this is the case for me at present, thanks x
Sorry for all the typos x
Jojow you have nothing to apologise for. This forum is for everyone with ms or possible ms. Just because it says ppms doesn’t mean you can’t ask questions and no matter how much we’ve got to cope with, we’ve all suffered the sheer agony of being in limbo as you are now.
Your Neuro won’t suggest an LP or spinal tap if he knew there was no chance of it being positive. He’s giving you the option of getting it confirmed or ruled out. Some people don’t want to know, I did and I’m glad I had it done but that’s your decision. If you have ms it could be rrms which could be controlled with drugs. If you had PPMS they would make every effort to make and keep you comfortable, and if you’ve read many posts you’d see that we have a lot of support available.
I hope someone will be able to answer your specific questions about your foot symptoms, all I can say is you’re very welcome to visit here and ask questions, we can all relate to your anxiety and despair not knowing what is wrong, finding your health deteriorating and not understanding why. I hope you’ll consider the LP, they can be very helpful.
Take care
Cath xx
Hi cath thanks a lot. I think I’m going to have the lp anyway. Yeah it is a very frustrating time being in limbo and I keep trying to second guess everything. Thanks v much for the support xx
Hi Jojow, I would say having an LP is the way to go. I was absolutely dreading it but they told me it was the only way they could diagnose… so I went like a woman going to my own execution. Can’t tell you how surprised I was… no pain at all… just a feeling like someone pushing their thumb into the base of my spine. Felt a bit wobbly for a few days… legs played up… but honestly I would rather have an LP than go to the dentist! At least if you get a positive you’ll know if it’s MS, and if you get a negative you can start looking at other possibilities. Good luck and let us know how it goes. Pat xx
Good for you. The only thing I’ll recommend is that you lie flat for at least 2 hours after the procedure and drink loads of fluids. You can get a nasty headache if you don’t. As Pat said, it isn’t bad, and you’ll get the answers you need. Good luck and let us know how you get on please.
Cath xx
Thanks cath and pat, I think it is defo what I have to do, will make sure I lie flat and drink plenty of caffeine, will let you all know one way or the other once it’s done xxx
Hi, yes I can confirm that I’m likely to have ppms and have completely different problems on each side!
Left - partially numb hand and attaxia (according to my rehab consultant)
Right - foot drop that has kind of turned into leg drop and bitterly cold lower leg/foot (even GP said nerve damage)
My biggest lesion is responsible for messages not getting thru to the other side apparently BUT some things have improved with steroids, so much so that I asked for another course… and I’d heard that steroids didn’t work on PPMS - we all have our own version of MS so I guess that it means that no real hard rules, so check facts… I’d hate to think of anyone putting faith in passing comments I made!
Good luck with the LP
Sonia x
Good luck with the LP. I can confirm what Pat and Cath have told you,as long as you lie flat and still, you’ll be fine. My husband was in the room when I had mine and honestly I really think it was far worse for him to watch than for me to have! Let us know how you get on. Nina x
Talking of lumbar punctures… I had mine on 7th floor of hospital. All went well… until I was lying flat… the hospital fire alarm went off and everyone had to be evacuated. Two porters came and wheeled me through a maze of corridors and out onto a fire escape… it was freezing cold and if I turned my head I could see down all 7 floors and I’m terrified of heights… Fear and anxiety caused me to get the giggles. Felt like I was in a Carry On film. My sister, who had come with me, had gone out for some lunch just before the alarm went off. By the time she got back I was back on the ward. It was one of those ‘You’ll never guessed what happened while you were gone’ moments. Lol… it could only happen to me… Pat xx
Hi Jojow Just to let you know that my neuros arrived at ppms after three and half years but I haven’t got brain lesions. I do have spinal symptoms though. Not sure whether you’ll be wanting to hear this. I do think you’re right to have the lp - in my case the presence of certain signifiers in my spinal fluid helped them to arrive at the ppms diagnosis. And I won’t lie, I’ve had 4 lp’s: the first two (when I had cancer) were merely slightly unpleasant, the third was a nightmare and unsuccessful and the resultant 4th one, being x-Ray guided, was a doddle. I’m sure you’ll be fine though; I have damaged discs down there which makes it more difficult to get in. Good luck with it, and I hope they can get to the bottom of your problems and that they are solvable. Kev
Thanks for the replies. Lol pat I could imagine that kind of thing happening to me. Kev did your spinal MRI reveal anything? As mine didn’t. I’m guessing even if it was ms it takes time to see what type it is? At present I get all these weird symtoms come and go but my walking etc has not been affected at all. I also don’t get the fatigue I read so many people mention on here but most my problems I would say are from my spine either that or I have concluded it has to be something hormonal if that is possible as most my symptoms seem to come on around the time of my period. Thanks and I will be sure to post on here once I get my results x
[quote=“Jojow”] Kev did your spinal MRI reveal anything? As mine didn’t. [/quote] Yes, several scans have shown a swelling along the centre of the spinal cord, it shifts around a bit like a sandbank in a river. It sits at about T4 and T5, and affects nerve signals to my legs and pelvic girdle. I’m lucky to have no symptoms any further north than that so far. If you have no brain or spinal problems showing, the lumbar puncture should help them decide once and for all if ms is in the picture. That’s a layman’s logic of course! Kev x
Thanks. Frustratingly my MRI shows nothing, no disc problems but nothing. Hopefully my spinal tap will rule ms out. Very frustrating when I find out the neuros secretary hasn’t even started the ball rolling for my appointment so could be a long wait to even have one done. Cheers for the advice though. Having a hard time at the mo with constant pain and no answers and very little help x
Hi Jojow
Hope your appointment comes through soon, but in the meantime, ask for pain relief, there are medications your gp can prescribe without a diagnosis.
Pam x
Thanks Pam, I am also awaiting an appointment to the pain clinic. I do have some pain relief meanwhile but doesn’t quite take it away. Will go the the gp again next week x