What is wrong with me and how do I find out which illness I have when numerous drs and health care professionals clearly don’t have a clue. Am I ever going to get a diagnoses and know what I have and how can I get better if I don’t know. Am struggling with hundreds of symptoms and am presenting with strange new ones. I made an appointment to see my GP yesterday as i have a chest infection which they have given me prednisone and that always get me better. Whilst I was there I asked them about the new symptoms I am experiencing as am now starting with my feet going into spasm, numb patches and a strange buzzing in my feet which won’t go away. My legs feel really heavy, sore and tight and my balance is off. Have come out in cold sores, dry lips and mouth ulcers and a strange headache that’s like pins and needles and buzzing in the top of my head. My eyes are so dry, and gritty and I am constantly thirsty. I have M.E (CFS) and Fibromyalgia could it be that or is my Reynauds. I am sure if it was a DR would have recognised my symptoms. I asked what’s wrong with me and what’s wrong with my feet. The Dr shook his head and replied that’s a strange symptom and I certainly haven’t come across anything like that before. Maybe he thinks I am insane or making this up. I have ruled out diabetes and thyroid issues as they have tested me for that and they tell me my blood tests were normal. How can they be it’s not possible or is it. My face and fingers are numb and tingling. I can’t cope with how irritated my skin is and the clothes I wear feel scratchy. I have tried various materials and the best ones I find is silk. Well that’s going to an issue when the weathers so cold. I can’t sleep as I have restless legs but it’s the issue with my feet which irritates me the most. Could I have M.S as I have problems with my throat and swallowing. Am Constantly exhausted and my joints especially my shoulders, elbows, wrists and back are so painful. Feel very unwell and am perplexed as what’s wrong with me I also have dozens of symptoms that suggest Lupus, Sjögrens and Scleroderma am seeing my neurologist and rheumatologist this week and am hoping they have an idea or clues to what’s up with me. My migraines are at critical level and I can’t take medication as have had serious reactions and now even my pharmacist won’t give me anti histamine tablets. There must be someone out there who is similar to me I can’t be the only one can anyone offer any explanation or have any ideas as to what’s up with me. I have been referred onto an immunologist after severe reactions and allergies and am now Collecting and adding new symptoms at an alarming rate. Thank you everyone for any replies
Is it MS as now having Strange new symptoms and a... - LUPUS UK
Is it MS as now having Strange new symptoms and am just wondering if anyone could pinpoint what it could possibly be.
So sorry to hear you are having such an awful time. My mum has myasthenia gravis and fibromyalgia and she gets all kinds of awful sensations in her limbs and tinnitus with terrible headaches due to the fibromyalgia. Obviously I’m no doctor but I know the fibromyalgia aspect is worse for her than the myasthenia (which is painless muscle weakening, still very scary). Her arms are constantly painful and they are adamant this can’t be MG.
I myself suffered from complicated migraines when I was in my twenties and they ordered a brain MRI to rule out anything more serious due to the paralysis. Maybe you could push for a brain scan, it’s awful worrying about your health I really feel for you.
Take care x
Thank you for your reply. Am so sorry your mum has fibromyalgia plus the gravis. I have just had to look it up as I hadn’t heard of this condition. Yes I have similar symptoms so it’s worth speaking to the rheumatologist as I suspect I have several undiagnosed conditions. I certainly have all or most of the symptoms I just need someone to test me. I hope your migraines have now calmed down. I am under the neurologist myself for severe migraines and am struggling to cope as noise sounds louder and I can’t bare the light. Maybe one day we can get answers we need alongside a diagnosis and the right treatment then eventually everyone will be well. Thanks again for taking the time to advise me. Wishing you a great day. Cheers. J😀
Look up Dr Terry Wahl's. She was a conventionally trained doctor. She worked as a conventionally trained doctor for many years until she developed MS.
Being conventionally trained she went to all the best conventionally trained doctors to help her. Until they said they could help no more. At that stage she was permanently in a wheelchair.
She didn't want to accept the fate she had been delivered so she started reading more widely and following advice re dietary approaches.
Several years later, she is no longer wheelchair bound. She now works as a doctor in the functional medical world.
The point I am making is not that you necessarily have MS, but that even if you have, its not over till the fat lady sings, as they say.
There's going to be lots for you to read and research, and possibly changes for you to make along the way. But it doesn't end here.
Thank you so much for your reply as I have just been issued a walking stick and wheel chair and have deteriorated quite quickly. It gives me hope to know I can get well so I will do some research. I hope your ok yourself and having a great day. Take care. J😀
Have you had an MRI of head and spine in the last few years. Ms has strict diagnosis criteria and takes a significant time to properly diagnosis, not unlike lupus. So even if you start the process to rule in or out ms, treatments will be a ways off.
However, there are many things available to successfully help you live and cope with your multitude of symptoms. Many of what you mention commonly occur in anxiety, depression and yes CFS and fibromyalgia.
My similar issues are always so much less prevalent when I am Consistant in my routine of therapy weekly, mindfulness meditation daily , Consistant sleep, high fiber diet and regular exercise.
There are drugs, for fibromyalgia, to discuss with your treating physian to help as well. Also consider asking your GP if they might suspect depression or anxiety as possibly contributing to your fatigue and numbness. Depression and anxiety are too often not diagnosed or addressed in our society. They are very serious diseases that one should never feel defensive or shamed about having. It is also all to often a fatal disease Which has chronic real physical symptoms very similar to lupus, ms or CFS.
I hope you are able to find relief.
Roarah...your reply could be read as suggesting that Jeromicuss888 may be suffering from a condition that is often fatal?
No wish to debate but sure that's not what you meant 😉.
Sorry for the confusion I was referring to untreated depression potentially being fatal as seen with robin Williams , Kate spade and so many others. Sorry if you did not understand my comment.
Good god no I think it’s some kind of neurological condition and because the symptoms are many and varied I swing from is it lupus is it MS etc. That’s the problem when no one seems to get to the bottom of what exactly it is. Luckily I think I will be here for quite some time, probably still figuring out what’s wrong with me. 😂😂. Have a great day and thanks for your reply. Cheers. J😀
Hey I was originally diagnosed with ms my mum had it.
Now they think it’s uctd
I have brain lesions but I’m the wrong area of the brain for ms.
I believe mine will turn lupus or stay uctd. One thing you mention that you don’t really get with ms is joint pain.
Ms and lupus can cause the same symptoms and can be very hard to separate I had to see a ms specialist who told me no when a normal run of the mill neurologist said I had ms.
Sjogrens can be the same x x
Thank you so much for your reply I will do some research and yes I think a real heart to heart with my dr could help. I didn’t realise the symptoms could be attributed to depression or my existing conditions. It could likely be that what I already have could be the culprit whilst I am thinking it’s something they haven’t diagnosed. Will try some relaxation and speak to my dr to find out what it could be. Cheers. J😀
Hi I haven't had time to read all the answers so may have already been said, have you looked up the diagnosis of sticky blood, some people with this are sometimes diagnosed with ms
Good luck, hope you feel better soon
Hi thanks daisy for mentioning sticky blood as I have noticed when I have blood tests my blood doesn’t look right. It’s all clumpy now when I have blood tests when it used to be lump free. I will mention this to the drs. I just feel they haven’t pinpointed anything all I hear is your fine tests are normal yet clearly I am not. 😂. I Am Now taking high strength Ginko biloba to thin my blood. Have a drs appointment this week will yet have another talk with the gp in the hopes of getting answers. 😂.Cheers. J😀
Forgot to mention sticky blood. This is really quite common with lupus patients.
I didn’t realise about the link to blood and lupus and to think I have had hundreds of dr appointments and seen a neurologist for 6 years and a rheumatologist for 2 you would think that someone would click onto what’s up. If they don’t know then they should have referred me to someone who does. I am of the opinion unless your at critical levels ie in hospital literally dying then and only then will they do numerous tests and maybe have an idea what’s wrong. It’s all about saving money keeping patients in the dark I’ll informed and I’ll advised. After all we are just a number and they are not bothered about our lives. All This talk about advances in science it beggars belief I am finding out about possible reasons to my ill health myself and not through advice from yourself and others on this site and not through them. It’s a miracle anyone gets a diagnosis. Just wish drs would keep us better informed and give us a better service. Grrrr. Thank you so much for your advice it’s the only way I get any medical help as I feel now I need to be fully informed to help myself as the medical Profession are useless. Have a great evening. J😀
Sorry didn’t proofread read what I read. I meant I only get advice through my own research and through advice with yourself and everyone on the site. It’s the only information I have and it’s always excellent advice. Keep up the good work. Thanks for helping me. Cheers. J😀
Omg just looked up the symptoms they cover 6 other symptoms for Hughes which I have. If after all this they diagnose me with Hughes I will be telling them who diagnosed me much earlier than them. Thank you. 😀😀
Just a thought. The ginko and possibly other things you are taking may falsify a test for sticky blood.
I was treated for that for many years. Once you start on blood thinning treatments it's really difficult to retest without coming off of the thinning treatment.
Point is you need to TELL THEM so they can make necessary adjustments before they do the test on you.
You may also want to read about Dr Brooke Goldner, who wrote a book. Goodbye Lupus.
It's not been generally accepted. But she was diagnosed with lupus and sticky blood and is convinced that undertaking a nutrient dense diet with exercise helped to reverse her prognosis.
When I tested positive for sticky blood enough times with additional qualifying events I was put on warfarin for life. Initially it seemed to sort many of my issues.
Later with reading lots of stuff about dietary approaches, I gradually changed my diet to incorporate much more fresh food and minimise processed and convinience foods.
I was always a little suspicious of Dr Brooke Goldners book myself. The mantra is that sticky blood is a lifelong condition. I wondered how she managed to alleviate the sticky blood issue.
But last year I had a SEVERE gastric bleed whilst on warfarin. Warfarin was stopped immediately with my team getting involved and saying it should never be restarted.
I was extremely anxious about this as I had previously had lots of life threatening events prior to the anti coagulation therapy.
But I am now an ex anti coagulation patient of about 15 months. I had a spell of severe headaches but these days I try to eat food with minimal processing and maybe this has been useful for me, as Brooke Goldner suggests it was for her.
Sticky blood is also known as anti phospholipid syndrome.
Something I read more recently is that possibly the body reacts against false phospholipids. These are substances in many processed foods. They were developed by the food industry to go in things like vegetable oils and bog standard cooking oils and margarines. They will undoubtedly be included in most processed food as manufacturers do what they can to cut the cost of ingredients
Bottom line is
1. Beware of anything that can falsify a sticky blood test
2. There may be dietary approaches that may be useful if you are not identified as a sticky blood candidate.
3. Sign up to the Sticky Blood- Hughes Syndrome Support forum on Health unlocked
I had been on warfarin therapy for 10 years.
Prior to an op last year, pre-op blood tests showed Lupus Anti-coagulant (sticky blood). When I fed that information back to my rheumatologist his response was that it didn't mean anything, lots of people who have it don't have Lupus and as he hadn't seen the blood test result, he wasn't interested. All this after my GP contacted him regarding her concerns that I was showing pretty much every listed symptom for Lupus. He also pressed my joints, asked if it hurt, and when I said it didn't, he told me I didn't have Lupus I had Fybromyalgia. The look on my GPs face when I told her what he'd said was an absolute picture.
It would've interesting to find out if he is on the lupus UK list of recommended lupus consultants
I doubt it very much 
It might be worth finding out who is recommended in your area.
Hi pippa thank you so much for the valuable information yes I could get a few scans done as am having problems in my head, spine, back and legs. Maybe a few scans and blood tests will sort it all out. Will do the research. I only thought MS could be a possibility as it keeps popping up when I research my symptoms and am now having issues with my arms and legs and the issues with numbness are getting worse. May just give them a call. Cheers. Elena xx
The blood test for sticky blood (Antiphopholipid syndrome Hughes syndrome) all the same .
the blood Is tested twice I think 6 or 12 weeks apart.
If you look at the GHIC web site you can see what professor Huhes has written, he discovered it
Thanks daisy I will research it now. Thank heavens I can get help with medical
Issues here as the drs and specialists are not that helpful. Cheers. J😀
Good luck
I get this stuff all the time. Small fibre neuropathy could explain it if nothing neuro inflammatory shows up. X
Thank you for your reply I will ask my rheumatologists could it be neuropathy. At least I have a much better idea now as to what to ask when I go to the drs. I hope your ok and keeping well. Cheers. J😀
It sounds as if you might have scleroderma, but I’m not a doctor. I have systemic scleroderma and it sounds similar to the symptoms I experienced with the onset of this disease. I also have restless leg syndrome. I take ropinirole
and it works great. Have you tried CBD. It works great for pain relief. I also use cannabis as I have a lot of nausea due to acid reflux. It allows me to eat. I don’t think I could eat without it. There’s a specific blood test they can give you to diagnose scleroderma. You will have a certain centromere
show up to indicate that particular disorder. Hopefully, you will find a rheumatologist that can help you. Symptoms vary with each individual. I wish you the best!
Just to say that no everyone with scleroderma has it show up in blood. Also I have an unusual antibody for limited systemic scleroderma that apparently many rheumatatologists wouldn’t look for usually called anti To&Th. I think limited type can develop slowly. Mine is overlapping Sjögren’s which is also seronegative for me ie lip biopsy positive.
Hi, I have Lupus SLE , sjogrens and Raynaud’s and to be honest you’ve described most of my symptoms above. My first sign of something going wrong was blinding headaches, worse then any migraine. It literally put my life on hold for 3 years. Then the itching skin started and the burning, then came the fatigue and clumsy balance. My pain in my joints then came along, at times the pain is unbearable. I did initially get referred to immunology, it wasted 3 years for me. As soon as I saw a rheumatologist I was put on the right medication and started to pick up. I’m still battling to get the right medication for me that works effectively, but it’s a constant battle. I really wish you well and hope you get the right help soon and more importantly the answer to all your symptoms. Stay strong and don’t give up. X
Thank you so much Babs for taking the time to reply. Am just off now to see the rheumatologist and I am getting print outs of Sjögrens scleroderma MS and lupus to force them to give me answers. Thank heavens you got a diagnosis and it’s awful you were left 3 long years without knowing it’s just awful. My symptoms are getting worse and more severe. The headaches are unbearable I can’t love like this. Have started steroids for a chest infection and am now starting to pick up. I will let you know it goes. Everyone on this site is so supportive and helpful just wish that the drs and so called specialists had more medical knowledge and we would all benefit 😂. Thank you again and wish me luck. J😀
The best of luck to you and stand firm. It was ten years in all till my diagnosis. Nobody should have to live the way we do and suffer constantly. But thankfully people who have got it, get it and are incredibly supportive and knowledgeable. Hoping you get a sympathetic ear and a knowledgeable one. X
I know this is now an old thread. However I have just come across a film on Amazon Prime concerning MS. It's called Living Proof.
It may be useful watching for anyone who is diagnosed with MS.
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