Neuropathic Pain #fedupwithnonstoppain

Hi, I am a new member, and to be quite honest I am not sure if I should even be on this forum or not. About 6/7 years ago I started having severe pain in my muscles, and numbness on my feet first thing in the morning, exasperated each month when I menstruate.

I have had bloods done, MRI, etc etc… To be told I suffer from Neuropathic pain, coupled with Vit B injections once a month. I receive pain killers, and antidepressants to help with the pain… Most days I manage to work, cut down my working week years ago from 37 hours to only 12 now, part time!. My condition is getting worse, and am struggling to cope. Do any of you thing from these symptoms that I could possibly have onset MS? I do not want to be a drama queen, but been suffering so long now…Doc said MRI was clear…is MS only diagnosed through MRI?

My symptoms are…Muscle and joint pain, fatigue, numbness in feet (esp first thing in morning) … unrefreshed sleep, insomnia, body temperature problems ( heat intolerant ), severe travel sickness, body feels heavy like a dragging sensation, need to support my wrists/hands when writing/ typing, reading a book etc…limb weakness… sweats, feel worse after a shower or bath…exhausted even at rest, symptoms worse at time of month. lack of libido, horrible mood swings.

Any help or info given will be very much appreciated.

Thank you :slight_smile:

cannabis is definitely worth a try

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It sounds like some of your symptoms could be typical of MS, although it’s difficult to say one symptom is typical whilst another thing isn’t because we are all different, our experiences of MS can be very similar to each other or completely different. Equally, we might experience the same symptom but describe it in different words. It’s a bit like when a doctor asks you how severe your pain is from 1 to 10: it will depend on my pain threshold, and on what pain I’ve experienced before as to where I’d class my pain on a numerical scale.

If your MRI was clear then a doctor can’t diagnose MS I think, but usually when MS is suspected, a lumber puncture and / or visual evoked potential test is also done. You also don’t indicate when your MRI was done, at the beginning of your 6/7 year journey or more recently.

What I would suggest is that you ask your neurologist (assuming you have one, otherwise whichever other doctors you see), to talk you through what they think might be wrong, what tests they’ve done, and what other tests they would suggest you have. If your MRI was a long time ago, ask them to repeat it, both head and spine, with contrast (which shows up abnormalities more clearly). You could ask for other tests specific to an MS diagnosis, (such as a LP) unless the doctor is certain it’s not MS because of the MRI. Ask for a drug review, what drugs you are taking and what they are prescribed for; ie, what the doctors expect each specific drug to help with which symptoms. If you are still suffering badly, maybe there are drugs they could change. Before your appointment, write a list of things you want to know and use it. Generally doctors don’t mind you referring to a list, and it means you make the most of the appointment. If you are going through this whole process with a GP rather than a specialist, ask to be referred to an appropriate neurologist / other specialist the GP can suggest.

Sometimes, just getting a definitive diagnosis, even of something like MS is a relief, just to get an answer. Also once you have something diagnosed it can change your eligibility to drugs (eg DMDs). I hope you get some answers soon.


Christ it sounds like you’re going through the ringer a bit you poor thing. My dx was last year, but had mri as well. The clincher was confirmation via a lumbar puncture where the consultant said “yes, you’ve got MS” (the he’s not known for his bedside manner hehe).

You should nag your gp for a Neuro referral if for no other reason than your peace of mind as sue suggests above. Please bear in mind that confirmed diagnoses frequently take a while. Patience will definitely be a virtue…

Take care and best wishes, fluffyollie xx

Oh love! You are suffering indeed and then some!

When I first began with nerve pain in my bum cheeks and back of my thighs, the pain was constant and unbearable…I was such a ratbag then!

I got onto amitriptyline. Started on 20 mg any got up to 100mg at night, before it zapped the pain. That was 15 yrs ago. I have been on 75mg for 12 yrs and that particular pain has stayed away.

Have you tried it?

Feel sorry for you have!

Love pollyx

Life’s a bu&&er. A MS diagnosis is a MRI and Lumber Puncture LP. Now we all have different symptoms - l do not think two of us are the same. l was interested in the fact that you have B12 injections. Have you googled ‘Could it be B12 - an epidemic of misdiagnosis.’ As l think you will find it a help. lt is known that people with MS - do need more B12/D3 so worth also another google Vitamin B12 deficiency MS and Vitamin D3 Deficiency MS.

lt is so difficult to find a neuro who specialises - or even understands MS. ln 33yrs, l have yet to find one. l did ask a GP if l could have B12 injections - and was told they were only for PWMS who were taking dmd’s - disease modifying drugs. So l do take a high dose supplement - that dissolves under the tongue. Ask if you could have the injections weekly to see if it makes any change in your health. l think you can actually buy them privately - they are only a vitamin not a drug. The trouble is - once you start having the injections it gives a incorrect reading. A few years ago - we had someone post on here who knew so much about B12 - and she was in a similar state as you. lt did turn out that she did not have MS - but it was the B12 - that was causing her such distress. She ended up actually treating herself.

l take not only B12 - but a B Complex - plus l am also taking a high dose Thiamine B1 and Biotin B7. l am following a recent trial on Biotin for Progressive MS and noticed benefits very quickly. Energy/Strength/Balance and warm hands and feet - after having Raynaurds for years.

The good thing about the B Vits is that you cannot over-dose. They are water-soluble - and you just pee out what you cannot use.

Even without a MS ‘label’ as such - do stay and let us know how you are managing. As there are many people on here who - like you are in ‘limbo’.

l do not have much faith in neuro’s. l am not being cynical more realistic. And l have done all l can to find out for myself what l can do to make my life easier and better. Your health is as much in your hands - as it is in the so-called experts.

ps. Paulo’s suggestion can also help.

lol Paolo…prob would give it a go if it was legalised…

Hi Ssssue, Sorry it has taken me so long to reply to you, but I have been in my bed most part of 2 weeks! Thank you so much for your very detailed and informative response to my query. I was diagnosed with Neuropathy pain about 4 yrs ago, that is when I had the MRI (horrible machine, noisy, and made me claustrophobic ). That was clear then…I get my bloods checked every 5 months or so, and it always shows a high level of inflamatory markers, which doctor reckons is brought on by the Neuropathy.

I take Remedine 40…amitriptiline 10mg everyday…I receive B12 Injections once a month…and I take Iron supplement also. My pain has worsened this last 6 / 7 months or so…I have another appointment with my GP 1st October, and I think he is going to refer me to a neurologist. The most recent of my pain, is Restless Legs Syndrome, but it is not just in my legs but all over my body, predominately my right side, it so annoying and painful. Blurred vision now and then, and tremors. and I have forgotten what a good nights sleep is. I have slight problems with my bowels and bladder occasionally too.

I will keep you updated after my GP visit. Thank you so much for taking the time to reply to me, it always helps to have someone who knows the pain, and can understand what I am talking about. I am terrified I do have MS, but at the same time I say to myself “do not be silly”…My friend is always accusing me if I get a new pain I always blame my neuropathy. It is so hard living in pain every day, I am 49 there is so much I still want to do, but most often I have to cancel arrangements. I used to do a lot of walking, cannot do much of that now though…It s so restricting, and it P****s me off, and brings me down.

Thanks again

Keep Well, and best wishes x

Hi Ollie, and thank you so much for your reply, apologies for the delay. You will see from my reply to Sue what is going on with me at the moment…but yes, I think my GP is going to refer me…and i agree with the patience side of things, unless you pay for private treatment, you have to wait weeks, even months sometimes for the sooner I get some answers the better!

Thanks again for your reply, really appreciate it.

Best wishes

Hi Boudica, Thank you so much for your reply, and I am sorry to hear you have suffered for so long. I do take amitriptyline, but not as high a dose as you, might be looking to up the dose then for me, will ask the doc about that.

I was very fit and active as a younger girl, the only link I can of which started all of this is when I was a teenager, I suffered every other month from continuos tonsillitis.right up until I was in my mid 20’s.then it left me completely…I started to get panic attacks soon after, then took every infection under the sun…Doc reckons my immune system is no longer doing what it should, so therefore the pain is coming off of that, all those years ago.

Thanks again

best wishes

Hi Space, thanks for your response…I will certainly mention to my gp about my B12 injections, never thought of it like that before.

You do try and trust the doc who makes out he knows best, but sometimes I feel like shouting at him and saying “I am in pain, all the time, do something” lol

Seen a neuro once years ago, and they were very matter of fact about things…not much talking atall actually…if I am sent to another neuro, I will definitely be giving them an earfull. I will keep you posted.

Thanks again, and take care. :slight_smile:

Just thought I’d mention that I’m taking a slightly higher dose of amitriptyline of 20mg. I take it around 7 - 8pm and was told not to drive after taking it. Ive found that dose works well to keep my restless legs and pins and needles at bay.

Thank you sallum, my current dose of amitriptyline is 50mg twice a day, and it helps relax me a little, but nothing else…got neuro appt end of October, so hopefully get some answers! Thanks again.

Just realised i put wrong dose of amitriptyline one of my replies, I do take 50mg twice daily lol

Funny how meds have different effects on people. My 20 mg taken once daily in the evening. Knocks me out for the night!

legality be damned.

i do not make this suggestion simply to ‘stick it to the man’ and use MS as an excuse to behave like a filthy hippie. It sincerely could be of use, to you and many many others.

the reasons for its current prohibition are ludicrous and do not give one damn about the potential benefits it might afford those with MS (and myriad other conditions).

thankfully there is change in the air; medicinal research, development and application are growing, as is the simple desire to use the herb recreationally.

the UK / EU are sadly lagging behind the times, for reasons which escape me, aside from the obvious, lucrative and unwinnable ‘war on drugs’ ™

an increasing number of US states are making it legal. The Province of BC has voted to ignore the Federal laws of Canada to also make it more widely available, primarily for those who need it for health reason. Even the Durham constabulary is choosing not to enforce the cannabis prohibition laws, due to its victimless nature and its un-enforcability.

if you get the chance…

just keep it in mind is all i am saying…

and FREE THE WEED! :slight_smile:

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and with convenient timing, in todays newspaper:

"…four-year study followed 215 adults with chronic non-cancer pain who used medical cannabis and compared them to a control group of 216 chronic pain sufferers who were not marijuana users…

Researchers found significant improvement in pain levels, mood and quality of life among pot users compared to the control group, and no evidence of harmful effects on cognitive function."

Hi Sallum yes it definitely is how dose’s are different and affect each one differently…I was on 20mg twice a day up until about a year ago, as the doc said “your pain barrier has gotten used to this dose now, so we will up it”…I was struggling really badly at the time , not with the restlessness all over feeling, but my pain in general, especially at night!

The dose I am on does not make me sleep, just helps relax me, maybe I need knocked out to have no pain atall lol

Take care, and thanks for your response.