I’m Having trouble with diagnosis my mum had ms Unfortunately she passed away last year and since then I’ve had lots of different symptoms that all started with my eye and let me to an apologist but I had a brain scan and then diagnosed me with MS due to some demyelination lesions on the brain I then saw a MS specialist who said I didn’t have MS and he thought Lupus and then seeing Lupus specialistAll bloods the negative and I’ve had a lumbar puncture is pet scans Have inflammation of my lymph nodes that goes up and down muscle burning pins and needles my have a lot of trouble with my neck becoming overly tight feeling like I can’t swallow properly my eyes are very sensitive to the light but I’ve seen two Neurologists who say I don’t have any solutions are in the wrong area of the brain I have a problem with my memory seems like it’s Friday and I don’t know whether it’s because I have a lot on or thinking constantly can’t seem to concentrate on anything brain fog comes to mind anyway I was told that I had a one in 10,000 chance of having MS the only two blood tests are positive or thyroid antibodies which is not enough to knock my thyroid function out to everyone or treatment and shouldn’t cause any symptoms and I also have an elevated ace results Which I read can be elevated and MS to have had it difficult to believe that my mum had MS and I have lesions on my brain and all these different symptoms and no other tests are positive and I still don’t have ms I literally just want to find out what’s wrong with me now I think the worry has done its worst I’m not sure that it is a mess myself doesn’t feel like it that everybody is different just because I don’t feel the same way as my mum and it doesn’t mean it’s not my mum is a very severe case as she passed away at age 47.
Really appreciate some advice on what to do next I kind of hit a brick wall and still don’t feel any better I’ve had some hydro and it’s not working on my joints xxx
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Buckley123
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I used the type for you button 🤦🏼♀️ clearly I do not speak properly! 😌⚠️
I get a lot of muscle twitching jolting my neck feels weak a lot I get unbearable pain in my legs at night if I do to much emg was negative my ace levels are double what they should be I’ve seen a sarcoidosis specialist too and he said it isn’t sarcoidosis.
Sounds like you are heading in the right direction and I have heard from others that it has taken years before proper diagnosis. Have you seen a neurologist that specializes in ms? Also what about a spinal tap? Prayers are with you and hope you find answers soon 👍🙏😉 Ken 🐾🐾
I'm sorry about the loss of your mum and also about these symptoms. I agree with Kenu that trying to see a specialist in MS is a good idea if possible. It can take years to diagnose, especially if one can't see someone who really knows MS. It is also possible that your symptoms can be attributed to something else, but you need to know for sure to get treatment.
'ms' presents itself so differently for each individual. If you suspect 'ms', I would try to get evaluated by a neurologist who specializes in 'ms'. Start a journal to keep everything all sorted out, and it might help get the answers that you seek. Keep Smiling
It is sometimes frustrating but it sounds like you are on the right track. Don't give up and Keep Smiling my friend. Let us know what develops if you can, Buckley123
It took me almost 5 years to get my ms diagnosis. But if 2 ms specialists have already said it's not ms a 3rd might say it is. Also get checked for lyme disease as it can mimic MS symptoms. There are a few others that mimic MS as well but they're not coming to mind right now.
so sorry for you for so many reasons,your mom,frustration,physical symptoms.It took me at least 7 years to get diagnosed and my regular doctor has ms.!He said I didn't show any "typical"symptoms.I was having a hard time walking straight and squeezing on my rib cage,he sent me to a back surgeon,who found my ms.don't give up,it is just finding the right dr.in your life's path,sounds like you are off to a good start.
Omg 7 years ! I think I’m on the right path I’ve seen the best in London ! But they can’t seem to Commit to anything I’ve seen neurologist rheumatologist tell me it’s one thing and then another! Then wait no not that iver !
Maybe I’m not seeing the best 😂
I’m not scared of ms you would think after watching my mum I would be but my mum is a long story one filled with could of would of should of not her fault it’s a sad story I believe in self help a lot xx
Could also be a combination of a couple of things, that may also be why they can't diagnose 1 thing. Also as some others have said, getting even 1 diagnosis does usually take a few years. it took 5-6 years for me to get a diagnosis! Don't give up, keep pushing and they will find out what's wrong. It may take seeing a few different types of specialists to really find out as it could be more than 1 thing you have wrong. Really hope you do find out. X
Hi there. I'm sorry to hear that you are having such a time of it getting help. I don't know if sharing my recent experience may be of any help to you, but here goes. I am sorry it's long-winded, so please read in stages if it's too much in one go.
I have many of the symptoms you describe, and have had them for at least 19 years. The tightness around the neck and the weakness and spasm in my neck, shoulders and back have been terrifying at times, the pain in my spine, and in my muscles generally, off the scale. I felt as if I was being choked. I wear a neck collar as needed as my neck muscles often feel too weak to hold my head up. I have trouble walking, headaches, fatigue, swollen glands, dizziness, brain fog. I was given a diagnosis of M.E. and fibromyalgia for years. I never felt it was the full picture or a wholly correct diagnosis. I suspected some form of autoimmunity and ongoing inflammation, but I was told there was no inflammation going on as my CPR and ESR were normal on blood tests.
The past two years the headaches and leg weakness got severe - struggling to walk a few paces and my legs did not feel connected to my head anymore.
I was referred to neurologists, who so far have been useless. They tried to say it was migraine. Nerve conduction studies described as 'largely normal' as were nerve conduction studies. My brain scan was reported as normal, but I saw there were areas of hyperintensities on T2Flare images within the subcortical white matter on both sides of my brain. I remembered that these had been present on a scan of my brain in 2007, but the neurologist told me these were normal and that I did not have MS. She didn't tell me what these hyperintensities were though, only what they were not.
I got a referral to a rheumatologist and he considered that my increasing symptoms were caused by fibromyalgia, and that fibromyalgia was largely psychological!!! I disagreed and begged /appealed to him to just run any other blood test for autoimmunity he could think of that hadn't already been run. I felt as if my brain and muscles were inflamed. I am very grateful that he did. I tested positive for an antibody called anti-C1q antibody. No one had tested for this before. I was then diagnosed with a rare form of vasculitis - urticarial vasculitis syndrome. I have rashes too, especially on the nape of my neck. This diagnosis was helped by the fact that I had already had an immunologist discover on blood tests that one part of my immune system was low, namely my C3 and C4 complements. I am in the early stages of understanding whether this diagnosis accounts for all of my problems. It is a lupus-like syndrome ( I didn't test positive for lupus on blood tests) and I believe that lupus can attack the brain and cause lesions. I wonder if it is worth you contacting vasculitis.org.uk at some point and discussing how you might go about getting a diagnosis of vasculitis ruled in or out. There are many different types of vasculitis and some affect the central nervous system and cause MS /ME type neurological symptoms. Because vasculitis is a rare disease and because most doctors don't specialise in it, it often goes undetected and wrongly diagnosed for years.. Also, maybe ask the hospital now if they can test your blood for the anti-C1q antibody. As far as I'm aware, GPs cannot run this test. This antibody can be found in people with vasculitis, MS, Sjorgens disease and lupus, so while it isn't specific in itself, it might help to point towards narrowing down what is going on with you. I wish you good luck and lots of strength- you will find your answers, just don't ever give up. You know your body best 💐
Oh my God you just made me cry you sound just like me my neck is the coming week and is becoming a little more difficult to walk and hold my head up I have headaches leg weakness I was referred to in the religious also and I have pleasures on the brain the same areas as you which is not typical for Multiple Sclerosis my mum had ms so this was the first thought !
Lupus was ruled out But I still feel I fit with Lupus the best out of anyone I have all the symptoms.
I’ll have to have a look back through my bloods I know I’ve been seen by people in guys hospital in London I know extensive at work has been done the only bloods have come back positive oh my thyroid antibody is not enough for medication and my ace levels are high but it’s not sarcoidosis.
I will look into anti c1q but my c3 and c4 is normal !
It's interesting that you see your symptoms fitting lupus best as my friend, (a nurse and midwife) has thought that my symptoms fitted lupus for years now.
My C3 and C4 levels were normal when I initially tested in the first 10 years of being ill. It was explained to me that the type of vasculitis syndrome I have is on a spectrum. Some people have it with normal levels of C3 and C4, but that can change as the condition persists, so there's no harm being tested at intervals. You can still have lupus like symptoms I think with normal levels. Also, what exactly were the readings for your C3/4? Often my bloods have been described as normal when they have not actually been within the normal range, but just sitting on the dividing line or just below it. The C3&4 levels do change.
I don't know much about ACE levels. I know in some types of vasculitis they can be raised, and also typically with sarcoidosis (I know two people with sarcoidosis).. It might also be worth a further opinion on sarcoidosis, specifically neuro-sarcoidosis if this hasn't already been considered. I know UCH have sarcoidosis experts (e.g. Dr Helen Booth) but I don't know if they have a particular expertise in neuro-sarcoidosis. I have heard that someone at the Royal Free does specialise in neuro-sarcoidosis, a neurologist called Dr Desmond Kidd.
John Mills at vasculitis.org.uk is a lovely man. You can always call them for a chat and see if they can signpost you. ,They are very friendly. John has been v ill himself and is familiar with how patients get treated in terms of not always having doctors take on board just how ill they are feeling.
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