Hi all, Yesterday i was told i have SMN, Going to a expert clinic in Manchester in a few weeks to fully confirm it.
But my nero doctor said its not progressive however everything ive been finding (most usa sadly) is saying it is.
It started suddenly in my right hand about 7 years and then moved into my left then moved in both up to my elbow and has since then now gone into my right leg.
I lost my job because of it 7 years ago and have been on long term sick since then.
So while i fully get there is not a lot of info around about this condition my questions are.
Sorry to hear you have SFN is it progressive iv'e had it over 2 years i would say yes since i had all the test done i found i can't feel heat anymore or my feet i can cut myself and no feel a thing my hands are bad feet toes legs
not working but my mother's died a month ago and now i have to find a job.
Normal life ? yes
what drugs are you on
ask for lidocaine patches i use them on my feet and they are really good also for my hands i wear splits from amazon they are hand supports .
Hi I woke up last Dec with tingling in both my feet within hours it spread to my knees and then into both hands I've had numerous bloods and an mri of my brain all clear neuro diagnosed me with idiopathic sfn mine has stayed consistent since Dec with not a second without tingling but no progression from where it is there is a small fibre neuropathy group on Facebook mostly Americans that all say near enuff that it is progressive I'm going bk to neuro on 27th as I had been signed off once diagnosed but have been asked to be seen again as not getting better I'm heavily pregnant which means I've been unable to take anything for this what is the clinic called in Manchester as I've found little is known about this illness
I was diagnosed with SFN seven years ago. Initially it felt like I had thick socks on. Or like I was walking on lumps. Then it felt like tight bandages round my feet. It spread to my lower legs but under the calves. I asked if it would like go up my legs and my consultant told me because it was only SFN it would be highly unlikely to fo above my calves. That was five yesrs ago and so far, touch wood, he was right. The one thing that HAS got much worse is the horrible tight feeling in my feet and lower legs. Also night cramps if I get into bed without first stretcking the muscles in that area, also I can't feel if my feet are gettinbg warm when i put them on a hot water bottle. So I have to be careful of heat. My feet alwas SEEM cold but aren't too cold when I actually feel my feet.
Hi Sarah. I’ve had sfn for about eight months and I’ve got the horrible tight feeling in my feet. Not many people mention the tight feeling but it drives me mad and makes me get upset. I’m terrified the whole thing’s going to progress so I’m really pleased to hear yours hasn’t. It gives me a shred of hope. Are you in the UK?
Sorry for late reply. I take 600mg of Gabapentin 3 times a day. 60mg of duloxetine a day. 1000mg of naproxen and salpadol a day and 50mg of amitiriptyline at night. I’m also on 10mg of butrans. Just to note all the about still leaves me in pain out of 10 around 3 or 4.
Hi Dawn sorry for late reply. I don’t know too much about tbh. But my neurologist told me about it as a last resort and even though I’m still under him I’m also going under this clinic at Manchester, he also said there I should one in London and that’s it. But he wants me to go to the Manchester one first to see a gentleman there and see what he says from there on in. Mine has progressed over the last 7 years but the frustration of it all is no one is giving answers and that’s what I want. I understand it might be rare but. When I get booked up with this place in Manchester I’ll let you know where it is. All I know so far is it’s somewhere in Manchester and my nero guy says the guy in charge at Manchester is one of the best in the uk. But as soon as I know I’ll let you know.
Sorry to read you also have SFN. The tight feeling is the worst of all for me but my balance has got progressively worse. I’m not sure if it’s to do with the neuropathy but I can’t close my eyes and stay upright. The tight feeling started in my feet in 2006 and now I get the tightness up to the top of my calves. It’s been at that level for quite a long time now and I don’t feel it will spread anymore. Yes it IS scary, it’s not just a feeling of tightness it’s more like they’re set in cement and the cement has dried. I hate that feeling too.
Hi all, I promised a reply when i had information.
I can fully confirm the specialist unit is at Manchester Salford Royal Hospital. Ive been once to see these people and for the first time ever in 7 years they have narrowed it down to one of 2 things thats causing my issues.
When i went the other week i sat for a hour with a specialist talked about everything that had happened from the start to now. They run some tests while i was there and i thought they are gonna tell me to come back but no they fast tracked the results. I was then giving the results and what these mean and the next steps or my plan.
In place ive got a scan coming up to look deeper and some other things. However i cant praise them enough. 7 years ive been pushed from place to place and these people are sorting it as best they can.
This place at Manchester deal in SFN and Nero issues. its a full dedicated department. This is a life line for me. I would advise anyone who needs extra help to go the the GP and tell them you want to go here.
They not only have doctors but offer counselling, classes on how to cope with the issues, All sorts and its funded by the NHS.
Im back next week for scans etc so will update then but amazing it really was.
Hi stu thanks so much for the update I too asked for a referel to Salford from recommendations on the Internet I'm wanting to see a Dr gosal is that who you saw as he's well known for dealing with small fibre I'm really hoping he can help me this has now spread since I had my baby up to my shoulders and upper legs for 14 months it stayed at my wrists and knees it's driving me insane I still think this is a glucose issue or some issue with food as it get's worse upon eating keep us updated won't u and I'll let u know how I get on there too thanks dawn
Hi there. Sorry about your condition. What is SMN? I was dx with small fiber neuropathy in 2012. It has been 6 long years of pain and suffering. I also lost a job and a boyfriend of 6 years. The anxiety and fear of trying to understand what was happening to me was over bearing (still is). My symptoms started with pins and needles in my calves and burning under my feet. It came out of the blue. I had a zillion blood tests, EMT/NCS, MRI's, Spinal Tap, to try and find a cause. The doctors ,8 Neurologist including two in NYC,USA, are saying it is Idiopathic SFN. It was confirmed with a skin biopsy test. So far I had 4 skin biopsies, 2 were "slightly" abnormal and two were "normal". My symptoms have progressed to P&N in both legs and arms, Burning feet with burning patches all over, Stabbing, poking, lancing, jabbing, bee-like stinging in feet and toes. Crushing bone pain and tightening pain in both legs!
It has affected my quality of life.
Most doctors here in the USA say it is progressive. (ugh)
Personally I can not work with this amt of pain. (I get Disability)
I tried all of the "first-line" treatments, Neurotin, Cymbalta, Amitriptyline, etc. I had to stop due to SE's or they didn't help. I even tied medical marijuana (Cannabis oil), it didn't help much for this type of pain.
I am taking Lyrica for the past 4 yrs, it does not help as much as it could. I take Tramadol as needed. I avoid taking it everyday for fear of becoming dependent on it. It doesn't help that much anyway.
The doctors including Pain Management are becoming frustrated and dont know what else to do for me.
Opioids do not help with this type of pain. Plus I do not want to become addicted to any opioids.
I am at my wits end with this "condition". I get depressed because I am otherwise healthy!
I hope I answered some of your questions. I hope you have something positive to tell me..
Hi Dawn - Yes i do. Really easy to talk to and never felt rushed or anything and they took the time to listen about whats going on but not only about that also about how it affects me.
I had tests done while there and they fast tracked them over so i got the results while i was there.
When i was there i was with them for about 3 hours. They with me made informed choices of the plan of action they even wright to me every 4 - 5 weeks to see how im doing and to keep me in the loop.
I found it a great well run unit and could not thank them enough. Im going back sometime soon as i need a biopsy on my lip and leg to rule out something. But yep Dawn you should be fine and i would say to anyone get sent by ya GP as its a lifeline for most people. I would be interested in following your trip Dawn so if thats ok keep me in the loop somehow. Good luck dawn
Hi Dee I am not diagnosed with this through tests Drs have said I have it as all my tests for everything else are clear I woke up Dec 2016 with tingling feet that went up to my knees then into both hands it's stayed there none stop since it's 20 months this month haven't had a second without it ,I also wanted to go to Manchester and my dr refered me to Salford general unfortunately after a month wait it came bk declined the hospital said they do not take patients out of area you have to be manchester I asked to see private and apparently he doesn't see private patients I'm at a loss I saw Neuro here a few weeks ago this is the fifth one he told me in 30 years he hasn't seen anyone like me with symptoms continues so I don't hold much hope of any help Drs don't seem to care ,I'm walking around with constant feeling of when your feet wake up from pins needles but it's all up my legs and in my hands it's driven me insane tried every vitamin tried pills from Drs does nothing to help my legs ache like they cud explode I'm 42 and don't understand how u wake up 1 day and never feel your legs and hands the same ever again
I'm sorry to hear of your symptoms Its all horrendous isn't it. feet .Hands. Arms now head and face I really cant bear it.
Doctor I can tell has lost interest in me .As I cant tolerate the meds she gives me. Wish I could
Iv seen 2 consultants over the years. They have nt done any of the tests Iv asked them for.Like (Punch Biopsy) he says its not necessary as my symptom's are the diagnoses.
I was hoping to ask for a referral to see this Guy in Manchester but I'm also out of Manchester area.
but would have paid private on Stubpb.s recommendation. There is the London Clinic that also has a clinic
I wonder if they take out of area patients.
Thank you for your information.it has saved me going to my GP. to beg her to refare me.. and to have her negative attitude.
Hi Dee I've seen neurologist again since we last spoke he said I can be refered to any hospital I wish but consultant has to refer not a local gp,went through all my symptoms again said there's nothing much they can do for me also went on to say that he sees ppl like me every week but in 30 years being Neuro he's never seen anyone with continues symptoms I have this none stop so I don't have much hope of anyone helping me I'm currently taking cymbalta 30mg as a last resort Google it it does help with nerves it comes under the name duloxetine as well as cymbalta both are the same thing ,it doesn't take it away at all but I aren't crying as much it's mostly lifted my mood ,over the past week it seems to of got worse again it's always there nonstop but it had been copeable yesterday was particularly bad and I'd had enough rang my gps and asked them why I'm left this way I snapped I just don't understand how u can be left like this with no interest as to what is wrong it's ruined my life ,forgot to say Neuro gave me a neupro patch that treats Parkinson's disease and restless legs I don't have either so why did I put it on the side effects are crazy 20 months tomorrow of this nightmare
.have you tried again then to get an appointment at Manchester.im in the north east, I thought you could go to any hospital but if it’s only the consultant
that can refare then I don’t see how I would get that as he discharged me last December,with nothing else to give me than pregabalin,that do not help iv had the meds you have been given ,but they caused horrendous side effects.so can’t take them.I can’t stand to be any worse than I am.due to meds.
Are any of your symptoms made worse in the hot or cold weather,
doc said that’s a defininate signs it’s SFN, why is your doc saying Manchester can’t help you,
have you tried cold packs on your body.,just read on Facebook turmeric
helps nerves worth a try,
also restless leg syndrome is the same family as sfn you don’t have to have the restless legs to have the syndrome
as that’s what I was originally diagnosed with,
have they suggested an antidepressant ,
might help take care let me know if you get an appointment at Manchester hospital ,