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Hi, undiagnosed newb

Hi, I have something wrong with me and nearly 1 year later, I’m still not much further forward with a diagnosis :(. All I do know is the doctor also thinks something is wrong (but no idea what) and that it’s definitely not arthritis (according to a rheumatologist). For around 25-30 year’s I’ve had issue’s with my knee’s and heel’s… From constant tingling to aching but, I just put it down to being a hard day or constantly on my feet. Even as a child I had trouble with my knee’s, unable to sleep due to pains in or around my knees… It was always put down to growing pains. Having said that, I never found anything difficult, no problems walking or running etc. For a similar period of time I’ve also had what I called dry eye’s, either eye but rarely both together. I’ve used eye washes and bathed my eye’s but nothing seemed to help…. I did mention my eye’s to my doctor because my father suffers from the same thing, although his eye’s water all the time. The doctor immediately dismissed this with, “dry eye’s is a symptom of arthritis and you don’t have arthritis “. I’ve also got problems with my hearing, lot’s of noises, tinging, clanging and static. I have always been active, a quick walker, bike riding, fishing and metal detecting right up until early July 2017 when after a day out I noticed my right elbow had become very stiff, I was unable to bend to wash my hair or face…. My left knee looked swollen but did not feel any pain at that point. By the following day Aches and pains started and soon after I found I couldn’t put my weight on either leg. I left it a week just to see if it eased or went by itself before making an appointment with the doctor. Before anyone jumps to any conclusions… In the last 25 year’s, I’ve probably been to the doctors 2 or 3 times. I’m what some would call a typical bloke, I’ve never bothered the doctor’s unless my wife has nagged me to breaking point… And it was my wife this time too. It was in the second week of struggling to walk and having extremely stiff leg’s to the point of them feeling very numb, burning and throbbing like crazy which would last most of the day from getting out of bed that I rang for an appointment, the doctor examined me and said he thought it was arthritis but not sure what type. He put me on Naproxen and Codeine and made an appointment for blood tests for the following week. Blood test results said low white blood cell count and prescribed folic acid, arthritis negative. Another week and I was struggling so much I called for another appointment, the pain was so bad I cried every day… Not being able to walk even around the house was frightening. The second doctor examined me and said he thought my knee caps protruded on movement but couldn’t explain why, even said it could just be one of those things and agreed with a rheumatology appointment. The appointment came and was for October . The pains and struggling to walk continued and felt like it was spreading…. My elbows, wrists, fingers and thumbs all started aching with shooting pains throughout my limbs. Again I called for another appointment, this was with a trainee doctor who sent me to x-ray dept for x-rays on my knees, he also made an appointment with physio therapy. X-rays came back “no action”. During all this I started getting a couple of dizzy spells which was scary and noticed a slight head twitch which got very much worse, affecting my left leg and head/neck… While sitting my leg would kick out and slap back down to them floor, sometimes once or twice sometime multiple times but throughout the day, my head flicks to the left from my kneck…. These Could be gentle or quite violent. Still a month or more to my rheumatology appointment I then came out in a rash, itchy and burning raised red marks. I couldn’t sleep and called 111 and was made an appointment at 5am in hospital with a doctor who prescribed antihistamines, she said it wasn’t because of my illness or the medication? The following day it was worse and was told to go back to hospital were I was prescribed steroids (Prednisolone)… The rash went by the next day and although I felt terrible I was able to start walking around very soon after. Rheumatology appointment came and I was examined and another appointment for an mri was made in December…. The results of which were negative. He said he would communicate with my doctor and suggest a neurology appointment and blamed Naproxen for the rash. The neurology appointment was made with another long wait (may 15th 2018). I’m getting about much better compared to before but still struggling. Physio and walking sticks really help, thanks to the trainee doctor. But Aches, pains and tingling all over. I get what feels like a mild electric current down my buttocks, legs and occasionally back and head. Sometimes my eye sight is like looking through water and can last for 10mins to an hour ish. So, I have neurology Tuesday next week and an ent surgeons appointment for hearing on Thursday next week…. Sorry for the long post, I’m not after sympathy or presuming I’m the only one suffering… I’m just frustrated. The doctor’s (and I’ve seen maybe 10) and my current doctor who wanted to take this up (but has never examined me in about 8 appointments so far) don’t seem to know what is happening. As I’ve already mentioned, I’ve never bothered previously when not well, I’m not a hypochondriac… Just confused and struggling, I’m loosing my balance and have fallen in the bath 3 times and on the stairs once…. And currently having a bad time of it. Thanks for taking the time to read, I’d appreciate any help. Ken. Ps. Sorry, I experience a lot of cramps in legs, feet and sides of my chest. My feet are always freezing cold and the cold area is sudden from just above my ankles. Blood tests from rheumatologist indicated crp normal at 2,low vitamin D at 32 and raised neutrophils at 10.5?? Any help or advice greatly appreciated.

hiya

i have no answers-just wanted to say that i got to the end of your post and hope you get some answers soon.

ellie

Hi Ellie, yeah sorry it was a long post, thank you for reading through. Believe it or not, I forgot other things such as memory, fumbling an dropping thing’s, most joints feeling very stiff… Especially my knee’s, fingers and thumbs. Worried but looking forward too Tuesday. Thanks again, Ken

I also have the neck twitch thing. I am not diagnosed with MS and am still looking for answers just like you so I can’t offer any advice there. Just wanted to ask have you had a test for ANA to rule out SLE? Also have you had an mri of your spine or lumbar puncture? Your symptoms seemed to have gone on for a long time (a normal flare in RRMS is 2-8 weeks) so that is worrying. I wish you well and I hope you get some answers!

Hello Ken

The only advice I can give you is in relation to the upcoming neurology appointment.

Take with you notes of what has happened to you and when. Note how long symptoms have lasted, whether anything has remained, or all symptoms have disappeared after a period of time.

Take someone with you if possible who can help you remember what is said in the appointment. It’s very easy to leave an appointment and end up saying, ‘what was just said?’ And ‘what did s/he say will, happen next?’

Ask questions about anything that’s said you don’t understand or about what tests you might be referred for.

Good luck.

Sue

Hi @chocorange,yeah sorry it was long but thank you for taking the time to read through :slight_smile: Hi @alencat,i don’t know what ana or sle is so no. I’ve had an mri from rheumatologist on lower back results state:no clinical or biochemical evidence of an inflammatory arthritis. Mri scan evidence of facet arthrosis l4/l5 but no spinal stenosis nerve root compression. I have no idea what that means and I have no idea on ms flares only I probably get at best 2 good days in a week? Hi @sssue and thank you for your reply, will do and thanks.

good luck for tuesday.

hope you get answers

carole x

Hi alencat, I’ve Googled Ana test for sle… My doctor did say it isn’t lupus? If I’ve had about 10 blood tests, 8 of them have been through my local gp surgery. Only the first through gp came back low white blood cell count, all others from gp no action… If have no idea what they are testing for, I don’t get told a lot and not sure what I should be asking. I’ve had 2 blood tests done through rheumatologist, guessing the first showed nothing as nothing mentioned to me… However, after telling me it isn’t arthritis they said they’d double check and took more blood, the results of which are, crp normal at 2,vitamin D low at 32 and should be more than 50,also neutrophils were elevated at 10.5… He goes on to say he couldn’t account for raised neutrophils with normal crp??

Thanks carole, appreciate the support. 1 more sleep :smiley:

KenCo

Long post but understandably if you are not making any progress. Not a medic, but your MRIs did not seem to point to MS; but of course many of us know on here it is difficult to get a firm diagnosis at times.

One thing I did pick up with your symptoms was coldness in lower extremities and wonder do you ever suffer from Raynaud’s Syndrome (poor blood circulation to extremities). Does your skin also feel tight and sore in places to touch? What I a thinking would you have scleroderma?, also an autoimmune disease, and a condition linked to Raynaud’s that would lead to stiffness in joints due to almost hardening of your skin. Also Lupus which also causes Raynaud’s, and also known to cause skin rashes, probably needs also to be ruled out.

Good luck; many of us are naturally downbeat after we get a firm diagnosis of MS but strangely many feel relived that we have at least got a firm diagnosis. So empathise with your situation and good luck going forward.

Regards

Hi Bracknagh and thanks for the reply. My gp said it isn’t lupus and I don’t have any skin problems although I do have some tough skin round my heels. I’ve been treating this for years with medicated socks and a stone, thinking it would be the cause of my aching heels but to no effect. As sad as it sounds, I only went to the gp when I couldn’t walk due to my knees. Worst area’s are heels, knee’s, elbows, finger’s and thumbs. I have constant tingling throughout my arms and especially legs, sometimes either side of my face or forehead. My hearing is poor and all the noises going on is becoming difficult to manage after 20 odd year’s, the same with my eye’s, eye sight isn’t great but probably 3 times + a month it feels like something in either of my eye’s and mostly lasts the full day… Sometimes there following day it can be there other eye but rarely both together. Sorry for another longish post… Hopefully I’ll get just a li closer tomorrow morning with neurologist. I’ll update once I’ve had my appointment. Thanks again.

Also should have added the twitching/foot kicking and slapping… which to me is very bad. I’m really sorry if anything comes across wrong, I know I’m not the only one suffering, just scared. I can get about some day’s OK ish, the initial not being able to stand or put weight on my knee’s also, the stiffness and numbness in the very beginning and struggling to get about most day’s now. Hopefully tomorrow I’ll get some answers.

Neurology appointment yesterday, not feeling too upbeat about it although my wife seems to think it went OK. I had a physical examination, sent for blood tests and an appointment for another mri, this time on upper back & neck. She said she didn’t think it was one thing causing my problems but several? Blood test labels had “hyperkinetic movement disorder”, “Ana” and that’s all I can remember :frowning: Ken