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Desperate to talk to somebody who understands

Hi everyone and thankyou in advance for reading. Im currently undergoing a lot of bloodtests for some symptoms that are starting to really effect my life. I have no idea whats gping on in my body. And i feel distant from the person i used to be as i struggle to even think these days. My symptoms are *shooting pains in legs, feet,hands,arms. Burning, tingling, buzzing, pressure. *getting hot and cold water confused. *Ice cold sensations. *feelings like i have hair wrapped around my toe. Sellotape stuck to the bottom of my foot. *trigiminal neuralgia. Mostely on one side but sometimes now tingling on the other side. *really bad forgetfulness. I have lost friends over this. *tiredness *struggling to follow conversations. *people talk and im listening but it doesnt go in. *getting words mixed up. Comes out all wrong and i sound stupid. Cant think of words. Forgetting names. *twitching body/muscles So i have seen the doctor 4 times and had blood tests done. Only thing so far was a vitimin D deficiency. So been taking that for 3 months which has helped uplift my mood a lot and a bit with the tirdness but the other symptoms have not gone. I have had a blood test for menopause as im a 34 year old woman. And a cholesterol check even though the doc said she thinks its neither of them. So waiting for results and docs again soon. I looked my symptoms up online and ms came up. I really dont know if it is or not as i dont have footdrop??? I have dry eyes and blurry vision sometimes but then i do have stigmatism in both my eyes so could just be that i hope. Im just sad that i really struggle most days now and nobody around me understand the psin and weird sensations. The doctor looks at me confused : ( Any advice would be greatly appreciated or just for somebody to say they understand and know what this is like. Thankyou for reading

hi anonymous

it does sound like something neurological but none of us can diagnose.

have you asked your gp to refer you to neurology?

your symptoms are all sensory.

i relate to the sellotape on your foot and hair round your toe.

cognitive symptoms too - forgetfulness and difficulty following a conversation.

keep sight of who you really are.

you are young and ought to be helped to get on with your life.

carole x

Hello Anonymous, have you thought about phoning the MS Society helpline, on 0808 800 8000, to talk through how you’re feeling with someone on a dedicated MS helpline? They may not have all the answers but they’ll listen to your concerns anonymously. As they say, it’s good to talk. Good luck.

Thankyou for replying catwoman. No i have not asked as i was not sure if that is what i need. Yes it does seem to be all the senses. I also have a hearing test soon as i can mishear people. You get these sensations as well? Do you know what causes that?

has the GP checked your reflexes on knees/ankles/feet?

When I went with the numb, burning cold leg he did mine and straight away said he would refer me to a neuro.

Ask them to refer you to neuro

yes donnie, we all get a random mix of symptoms.

it is your central nervous system.

like the main chip in your computer going dodgy.

have you seen a diagram of the immune system attacking the myelin sheath, if not ask for the RRMS booklet to be sent to you from this site.

my eldest son had just qualified as an electrician and he found it very interesting.

said “oh that’s going to blow a fuse” “that could start a fire” and “it needs a total rewire”

i find it helpful to think of it in terms of an electrical fault.

like a frayed cable.

the signals get disrupted on the way from your brain to feet, hands, bladder etc.

ten years on, i’m still more or less functioning.

see a neuro as soon as possible

Hi My name is Maura also worried and upset and looking for advice.I am 37 and up until April was very fit active and working 12hour days.It started in April with my right foot going numb on and off by end of May both feet were like that permanently strange heavy numb sensation. I tried to ignore it but the more I moved my feet just kept burning then back numb this came up my lower legs.Few weeks later hands started tingling and getting some strange sensation in them although not as bad as feet.Went to wash my hair and got an electric shock sensation to the back of my head and down arms.i saw my Dr and got a Neurology appointment Neuro thinks it’s MS and waiting on Mri. I live alone no family or close friends nearby so feeling very scared trying to hold out for Mri feet are getting heavier.I have a gut instinct there’s a lesion in my cervical area ??Has anyone ever come across that with Ms and does it mean less mobility?Thanks so much.

Hello Maura

I’m sure that you feel as though you’re just getting worse. And when you say your feet have become ‘permanently’ numb and heavy it does feel like they’ll never improve. But the likelihood is that they will improve.

Your neurologist believes it is MS and thinks the MRI will confirm it. S/he will have based this on your history, your current symptoms and your physical examination. An experienced neurologist can judge whether you have the classical signs of MS. They wouldn’t suggest that you have MS unless they were fairly sure.

Something like 85% of people diagnosed with MS at least in the beginning are diagnosed with a relapsing remitting type of MS. Assuming this to be the case with you, you will have improvement of your current symptoms. It feels like recovery, even partial remission, is never going to happen, but with RRMS, it does happen. It can take months. And then one day you’ll realise that X symptom seems better. Although it may have been improving over weeks, it’s so slow that you don’t notice. The other thing that happens is when there’s nerve damage, other nerves compensate for the deficit. This too can take time.

So don’t feel as though you will never improve from where you are today.

The other thing you should keep in your mind is that there are disease modifying drugs (DMDs) to reduce the number and severity of relapses. So, assuming you do get an MS diagnosis, and assuming further that it’s the relapsing remitting variety, you’ll be able to take a DMD which means that any relapses ar greatly reduced.

I do hope you don’t have long to wait for the MRI and the results from this. It may be that the neurologist is wrong and you don’t have MS (it does happen) in which case you will probably recover from this one time event. But if the neurologist is proven right, and you do have MS, it’s not the end of the world. You will recover your fitness and be able to continue your life with only minor changes, one of which will be the taking of a drug to keep relapses at bay.

Sue

Sue Thank you for your lovely positive words.Am finding it tough at the moment with burning pain everywhere and the feet.Your encouragement means alot thank you.

Hi Maura,

The electric shock sensation sounds like Lhermitte’s Sign. Although found in people with MS it can be caused by a number of conditions including vitamin B12 deficiency.

Regards,

Anthony

Thanks Anthony.

anyway if you DO have ms, you can have free membership to the brain fog gang! it’s a very long waiting list, like getting a season ticket for old trafford! keep on keeping on maura!

Maura

If you do have really bad burning type pain, try asking your GP for a prescription for a drug like Amitriptyline. It’s a tranquilliser in high doses (150+mg), but in much lower doses (increments of 10mgs) is good for neuropathic pain of the burning type. It’s something that you should only take in the evening, by about 7pm. That way it will help for the evening and through the night, but not give you any next day side effects (like dopiness).

That’s what I take it for. You don’t need to have a formal diagnosis to get this type of drug. And it’s so common, you should be able to have it prescribed in a low dose from your GP without any problem.

Sue

(Carole is right, an MS diagnosis does entitle you to lifetime membership of the Brain Fog, should you be loopy enough to take it up. Carole, Anthony and myself are all members.)

Thanks everyone overwhelmed by your kindness and support pretty amazing group.Sue the Gp started me on Amitriptyline about a week and a half ago went up to 20mg Wednesday doesn’t seem to be working but will give it more time burning just gets worse if you move your hands feet legs too much.MRI Tuesday then hopefully back to Neurologist a week after that.Thanks Carole will try keep on keeping on.

magicool spray helps me with my burning feet. they have it at tesco and probably asda.

Of try ice packs. I have one for wine that unfolds (it wraps with Velcro round a wine bottle) I sometimes put it in a pillow case and lay it in/on the bed and rest my feet on it. Sheer bliss.

Sue

Thanks Carole and Sue will try both of these Right hand weak on and off very worried about that.Scans tomorrow.Donnie you are not a hypochondriac I went to an a&e twice when only my fee were bad but they told me I was imagining it housemate just upset me asking when was I going back to work I guess if you don’t look sick people don’t believe you.

Confused.After having recent Mri scans of Brain Cervical and thoracic spine my Neurologist rang me to say these are all scans look good and normal and that outrules Ms.In the meantime my right hand has become a bit weak and my nerve pain has worsened can see visible colour changes in hands and have burning nerve pain in both basically feeling alot worse than when first saw Neurologist.Balance and vision all okay symptoms are on both side of the body. Told Neurologist how everything has gone worse she doesn’t seem concerned and said to increase my painkillers.Told her how the electric shock type pain I experienced in back of head and down arms previously altered me to something serious going on.Said she will get my doctor to do specific bloods and trial of B12 injection.Just wondering does clear mri scans rule out Ms and is there any other tests I should be looking for??Very fed up of the pain and not knowing what’s wrong with me.Thanks so much.