Last reply 3 months ago
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.

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kenco
3 months ago

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.


kenco
3 months ago

Sorry again… Blood tests from rheumatologist indicated crp normal at 2,vitamin D 32 and raised neutrophils at 10.5??


stumbler
3 months ago

Hi @kenco and welcome.

Your struggle for a diagnosis is not that unusual, unfortunately. Our bodies are quite complicated and Doctors aren’t magicians.

You need to prepare for your upcoming Neuro appointment by listing all the strange symptoms that you’ve experienced. Keep it short and precise. This will be useful for the Neuro.

Is it MS? Well, that is why you’re here. It’s very hard to say. Some of your symptoms are indicative of MS, but those same symptoms can present in various other conditions too. Your MRI being clear is also inconclusive – which parts were scanned?

Your vitamin D levels are a bit on the low side. That’s nothing unusual for a UK resident. We don’t get a great deal of sunshine! Normal vitamin D levels are above 30 ng/mL. You may want to consider a vitamin D3 supplement, as a deficiency can cause problems.

Do let us know how the Neuro appointment goes? Although, they may just call for a range of tests, including bloods and MRI scans.


kenco
3 months ago

Hi stumbler and thanks you for the reply. The mri from rheumatologist was on the lower part of my back, no dye used. I was prescribed pro d3 20,000 iu for vitamin d, 1 every other day and then fultium d 800 iu every day for the 6 month’s.
Thanks again


cameron
3 months ago

All I can say is that if it is MS, my fifteen years with it have been infinitely better than the eight months of living hell before the diagnosis. With the right clinical team, the right drug and the right mental attitude, there is a way forward…… but you can’t take any of these as a given. You’ve had a raw deal this far but hopefully the neuro appointment will get things moving. As @stumbler suggests, make a list of symptoms, if possible with a timeline. Sending big hugs xx


kenco
3 months ago

Thanks @cameron, worried but looking forward to Tuesday


vixen
3 months ago

Hello @kenco, sorry you’re suffering, I hope you get an answer soon. I was diagnosed last year, but 10 years ago, I went down with another autoimmune disease, sarcoidosis. Essentially, this is a lung and pulmonary condition. However, I had an unusual version characterised by acute arthritis, swollen ankles, a cough and awful fatigue and stiffness. I think my point is, there is so much overlap and similarities with many of these pesky conditions, it’s not always easy to diagnose. Have you had an ACE test as part of your blood tests, if not, you could maybe ask for one. Good luck, let us know how you get on x


kenco
3 months ago

Hi @vixen and thank you for your reply. I’ve probably had about 10 blood tests, 8 of which have been through my gps surgery. I have no idea what they are testing for and as far as I am aware, only the first showed a low white blood cell count and prescribed folic acid… All others from gp came back no action.
I have along had 2 blood tests done through rheumatologist, I’m guessing first didn’t show anything as nothing mentioned however, after telling me it wasn’t arthritis, he said they’d double check and took a second lot of 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??
I’ve asked my gp what are they testing for and all I got in reply was multiple things??
Thanks again,
Ken


sweeney
3 months ago

Sadly it can take an awful long time and many tests to get a definitive diagnosis. MRIs and Lumbar Puncture tests may prove negative or inconclusive inititialy. The longer the period between relapses the longer it takes. You seem to have reached the point where a half-decent neurologist should be able to say Yes or No. The list of symptoms point in the direction of Yes (vision problems and low vitamin D ring a bell with me for example), but then again I am not a neurologist. Good luck either way.


kenco
3 months ago

Thanks sweeney, appreciate your comments…. 1 more sleep 😀


wjgregg
3 months ago

Good luck with your appointment. I hope they give you some answers. The wait for a diagnosis can only add stress and anxiety, which don’t help multiple sclerosis. I think the secret is to find ourself the “right” doctor. If you can find a neurologist who specialises in MS, rather than a “general” neurologist then if you do have MS they are more likely to spot it. Neurology is a vast field. I was in hospital for three weeks last summer after my second relapse in four months. The hospital neurologist was not a specialist. He managed to tell me that I had MS, but couldn’t tell me what type it was… I spent a very worried few weeks until my wife found me a neurologist who specialised in MS. I paid privately to see him, was diagnosed properly with rapidly advancing relapsing remitting MS, and put onto Tysabri within weeks which, touch wood, is doing the trick. No relapses since my hospitalisation last summer.

I hope you make some progress. You deserve it.

Good luck and best wishes.

Jon


kenco
3 months ago

Hi wjgregg and many thanks, Ms has not been suggested… I’m just searching. In fact nothing has other than arthritis of various forms from gp’s and then not arthritis from rheumatologist. It was rheumatologist who suggested neurologist. My doctor says he has some ideas but doesn’t want to commit himself???
Good luck to you Jon and many thanks for your comments… All the very best wishes to you!


kenco
3 months ago

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 🙁
Ken


stumbler
3 months ago

@kenco , it has to be a measured investigation, eliminating the probables, then exploring the possibles…..


kenco
3 months ago

Thanks @stumbler yeah I understand, maybe It was just a me but I didn’t think she listened or it was a chore.
I had an appointment today with an ent surgeon for the my hearing… I need 2 hearing aids and said damage is from nerves, he is going to write to the neurologist to request an mri of head to assess how bad the damage is.


kenco
3 months ago

Nerve damage affecting hearing

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