Hi all,I’m new to the whole MS diagnosis dilemma and would really welcome your help. I’ve been referred to a neurologist because some symptoms I’ve been having are pointing to MS. My Dr has obviously been on the ball by referring me so quickly. The confusion I’m having is because he says that pain is not a symptom of MS but I’m having lots of it. I’ve looked on a few websites that say pain is often a major problem, hence the confusion! I would appreciate any comments you have on this. Thanks.
hi
pain isn’t something you can see, but you feel it big time.
ms pain won’t respond to normal (?) pain killers.
it is neuropathic pain and needs neuropathic painkillers.
since he is so on the ball, ask him to ask your neuro for suggestions.
gabapentin is the most commonly prescribed.
i had an amazing gp when i was going through diagnosis.
he left for a better practice (boo hoo).
good luck
carole x
Hi AW1
Pain (of the neuropathic variety) was my first, and continues to be my main symptom. My Neuro (and team) are pretty certain I have MS, but are waiting on a relapse to confirm diagnosis.
As Catwoman says, Gabapentin is a pretty good starting place for neuropathic pain relief (I’ve been on it, along with amitriptyline for 3 years now).
Thanks Carole, my first neuro appt was 3rd of Jan But its been cancelled-no reason given! I couldn’t Understand why I’m getting stabbing, aching and Burning. Dr told me to take ibuprofen but it doesn’t Sound like that will be any use. Thanks for your Reply. Andy
OK, thanks for that. When I eventually get to See a neurologist I’ll see what he says. Andy
Hi AW1
As Carole and Theresa have said, neuropathic pain is very common in MS. The ‘MS doesn’t cause pain’ argument is an ancient one. And it’s been well and truly rubbished.
Neuropathic pain comes in many forms and as I’m sure you’ve already discovered, ibuprofen is useless (as are all over the counter medicines). Neuropathic pain needs drugs that will specifically affect the nerves.
Have a look at the MS Trust publication about pain: Pain | MS Trust
Sue
Hi Sue, I didn’t think ibuprofen would work because The pain is different to anything I’ve experienced Before so I haven’t taken any. I’m still in doubt That I could have MS even though my Dr has suggested It each time I’ve seen him. I’ve read about neuropathic Pain but don’t really know if that’s what I’m Experiencing. Thanks for your advice. Andy
I usually have pins, needles, and shooting pain in my legs. It almost feels like bumble bee’s are after me.
I’m having stabbing/throbbing pains in both thighs.same in both upper arms. All limbs feel weak and heavy. Pain in both feet. Fatigue. Lightheaded, feeling of pressure on both temples. Left cheek going numb frequently. Burning and numbness in right thigh when standing or sitting. Three smallest toes on left foot numb most of the time. Discomfort behind left eye-thankfully only for 2days. Tightness around chest just once, thought I was having a heart attack. Forgetting words and what I’m saying-not good in my line of work! Lots of strange pain. I’m 51 now and have been ignoring symptoms for a longtime. Do these sound like ms symptoms? Thanks!
Hi
The trouble with MS is that there are many symptoms which are shared with other neurological conditions. So, while you might be able to say that your symptoms could be due to MS, equally they could be caused by something else.
We are all different as well, for example I’ve had pain, numbness, pins and needles, the ‘hug’, optic neuritis, a whole load of other symptoms, some of which you’ve experienced, and maybe some that you haven’t.
Theres no way of telling whether your symptoms are caused by MS, until you’ve had an MRI that’s been looked at by a neurologist and maybe other tests (LP, VEP etc). And even then, you may not get a firm diagnosis.
Sorry, there’s just no short cut to MS diagnosis. Or to a definite ‘it’s not MS’ either.
Sue
Thanks for all your advice on this, I wouldn’t have thought of ms if my doc Hadn’t said it. I’m not hoping for a quick diagnosis because it’ll more than Likely mean having to give up my job unless its something else. Just hoping For some medication to make life easier! Got another neuro appt for 10th Jan, Seems ages away now.
Hi everyone, hope you’re all doing OK. Had my first neuro appt today and left feeling More worried. Had more blood taken and he wants an MRI but also a ct scan because I may Be showing signs of parkinsons. Is this a routine thing and I’m worrying for nothing? I Don’t have the shaking and trembling associated with parkinsons but the other symptoms I’ve been having are getting steadily worse. Would appreciate any words of wisdom! Thanks. Andy.
hi andy
scary time for you but parkinsons has shown promising for a new treatment, (wish i could remember more but ms brain mush).
as for your job, you are covered by the DDA (Disability Discrimination Act 1995).
you need to be seen by the occupational health doctor at your place of work.
attend your scans and good luck
carole x
Hi Carole, thanks that’s reassuring to know about the new treatment. The work situation is difficult because I’m a self employed driving Instructor so the DDA can’t help. If I get a diagnosis either way It’ll affect my driving license so would probably lose my license to Instruct. I’ll have the scans and see the neuro again in 3 months for The results. Thanks again for your reply and I’ll keep you posted. Andy.
Hi All,
Making my first post here in the hope that someone can maybe help me understand a few things. Reading through this thread it sounds very much like myself although I may be a little further along the diagnosis route thankfully due to provate medical cover through my employers.
I have a historic nerve damage in my right leg which has caused a drop foot and numbness in foot since my early twenties but over the last three years I started to get shooting pains in my leg and varying pins and needles type feelings. The doctors thought this was an issue with my back and sent me fro an MRI but the results came back saying there was nothing of concern. Since then i was put on pregabalin as the pain was thought to be related to historic issues, this did help in some ways but also has some side effects.
since then I have had a number of incidents which again were thought to be back related where i literally was unable to move without being in huge amounts of pain. Again after scans nothing was visible in my back.
In Aug 16 my I started to get similar pains in my left arm which would cause massive cramps in all the muscles down my arm which was very painful. After a few weeks of this I also started having a continuous tremor in my left hand/arm. Follwing yet another MRI but this time of my brain it was confirmed that I had a number of leasions on my brain. This then led to a lumber puncture which returned positive for whatever they were looking for (the name of which i cant remember). The specialist advised that the mostly likely causes here were MS but advised me that I would need a second incidence of issues or another scan showing changes in the issues in my brain.
Now since that point they have referred me to an MS specialist, who has sent me for yet another MRI and I now wait for another appointment to come through. During all this I have also had a long period off work where i was unable to actually function, I was beyond tired, yet couldn’t sleep, Had pains in my leg, arm, right side and back. I too had issues with pains behind my left eye which were like someone had stabbed with a hot needle and i also suffer with a very random issue in that whenever i lie down my i get the sensation that my feet are hot which is sometimes painful but my feet will feel normal to the touch.
Sorry my tales of woe here but now to my questions:
My specialist prescribed me a huge dose of steroids which has cleared up most of my problems for now however i am left with a slight tremor in my arm and the odd pain. I have read that the earlier the diagnosis the better so that you can start on the medications. Since both tests have returned as positive an I have had all these issues I don’t understand the delay?
I am worried i will have another reoccurrence and then get left with another ongoing problem like my arm. I know this is difficult to diagnose but i wondered if anyone else has had experience of these sorts of delays?
Any advice would be greatly appreciated and AW1 sorry if i have hijacked your post here. It was just very similar to mine and was hoping i could tag on.
Many thanks in advance,
dave
dave
the neuro apointments are like hen’s teeth so expect it to take about 6 months.
try ringing your neuro’s secretary and ask for the earliest possible appointment.
someone may cancel theirs.
when was your MRI arranged by your ms specialist?
andy
the treatment i mentioned is deep brain stimulation.
good luck
carole x
Thanks Carole,
My MRI was on the 27th of December. The hardest thing for here is that I am now on the NHS side of things. The private cover only lasted to the point of referral to the MS specialist, so I have gone from waiting a week maybe two for appointments to months.
I have tried calling the secretary and advised I am happy to attend at late notice but she advised that I am looking at approximately a 6 week wait which is frustrating given the number of issues I have had. I just have this real concern that something else will happen and I will be left with another niggling issue just like my tremor before they can start me on some preventative medications. Today for example I have been unable to go to work as whenever I start walking it’s like I am walking on hot glass. Sharp pains and heat/tingling. I am just thankful that my work have been very supportive.
Sorry i I am just venting!
randles
you will just have to wait for the 6 weeks.
meanwhile learn mindfulness meditation as it is brilliant at calming the mind.
it can be used for pain relief too.
as you do deep breathing focus on the pain being expelled with the out breath.
it all sounds very new age-y, what my hubby would call hokum but it really does help.
carole x
dave
you will be put on a 3 year license but that’s all.
i don’t see any reason for you not being allowed to teach other people how to drive.
carole x
Hi all,sorry its been a while since I last posted but I’m hoping for some advice. I’ve had an MRI and datscan a few months ago and I’m waiting for a follow up appointment with the neurologist. I was supposed to see him again in April but as yet I still haven’t got an appointment. My GP has told me the results appear normal so I’m wondering if that’s the reason I haven’t been given an appointment. That symptoms are getting progressively worse and the main problem is fatigue and leg pain. I’m thinking about paying to see someone private but is that a good idea considering the negative scan results? Any advice will be greatly appreciated! Thanks. Andy.
If you were supposed to see the Neuro again in April and haven’t had an appointment yet, I’m wondering why you haven’t been on the phone to his secretary to request one, four months later?
There is probably a mountain of files awaiting reporting and further appointments. I would most certainly be taking a more proactive approach to my health Andy. Should it prove to be ms time is of the essence in getting treatment, be it steroids or disease modifying treatment. These can reduce relapses and slow progression. You are saying you’re noticing symptoms getting progressively worse…then take action!
Your gp isn’t qualified to say the neurological report appear “normal”. That’s why he’s a general practitioner and the neurologist is a specialist. If it’s not ms, then there’ll be further investigation to find out what is going on with your body. Chase it up!