Rosie, I have been diagnosed with ms. I didn’t have the ‘limbo land’ experience as I thought I knew the cause. I had previously had back issues (& a back opp). Symptoms of compressed nerves and ms symptoms mirror. I expect other things do too.
Good luck & I truly hope it’s not ms. Well done for doing the Mir. It sounds like that was a big challenge.
hugs
Hey everyone,
Just got home to a crappy letter from the neurologist.
I assumed the MRI’s were clear as I hadn’t heard, apparently not! The spine has small things but conclusion says nothing to note. Brain has 6 small patches of White matter within the cerebral hemispheres bilaterally. No clue what half of that means but I know white matter is a bad bad sign of MS.
Anyone in the know more than me can advise on this? At 26 this means if not ms theres something neurologically going on?
In complete shock at this. Thought I was doing okay with processing everything but this has really hit me. One way or another this is going to affect my life??
Thanks,
Rosie
Hi Rosie.
Its an interesting set of results. From what you described I was almost certain that it was a peroneal nerve issue, however I expected it to be isolated. Damage to your peroneal nerve almost certainly is what caused you the grief with your foot, confirmed by the nerve conduction test.
The question is whether damage to the sheaths which protect motor neurones, otherwise known as demyelination, is the cause of the peroneal nerve issue or whether it’s simply a trapped nerve. The area of the brain you describe where you have white matter lesions is a fairly common site of MS lesions and it is possible that MS or something else is causing your other symptoms. Does your letter mention demyelination at all? If there’s no mention then that’s really positive news.
For what it’s worth, when I was going through my own diagnostic process, I was having all kinds of ‘symptoms’. The most notable was waking up freezing in the middle of the night (and I mean frozen to the bone) and issues using my hand/fingers, along with all manner of twitching and body jerks. Like you, I could never have believed that stress could be causing all this… until my neurologist told me there was nothing neurologically wrong with me. It’s unbelievable what stress can cause and it’s so difficult not to convince yourself of the worst things. It’s easy for me to say ‘don’t worry’ but just try to remember that there are so many people with inexplicable symptoms who have ended up not being diagnosed with MS or indeed anything neurological.
My guess is that probably they will refer you for a lumbar puncture, which in theory should definitively rule MS in or out x
Neil,
Sorry may I ask if you have been diagnosed with MS?
Hope you have an appointment with the neurologist soon so you can ask q’s. If not, in your position I would see your go to get them to ‘chase’. It may be worth asking for a phone call from gp. You can usually get a same day call back, where’s waiting for A available appointment can take weeks !
No, I dodged that bullet thankfully. But my situation was uncannily similar to what the poster here has experienced in terms of ‘symptoms’. In the end they settled for common peroneal nerve palsy which fixed itself and attributed everything else to stress.
Hello Rosie,
I am 67… and have similar symptoms to you, and am still undiagnosed since first symptoms 12 years ago.
Additional medical/clinical issues have been related to me from the neuros… but don’t get too excited, because MS might be the better option, clearly more acceptable at my age, but still upsetting… However…???
I shall start a new thread because it might be of interest to others, too…
My attitude, when I was told that it might be MS, was Oh well… this is it, like it or not, just get on with it… It is all this waiting and uncertainty that is so stressful… Sounds like Brexit…
Read my next post… Anne.
Hey, just wanted to post for anyone that see’s this and has anything similar, so you know how it turned out.
The neurologist ruled out MS on the basis of the mri scan, said it didn’t look like MS. He referred me to the rheumatologist saying he thought it was nerve damage in my leg and fibromyalgia for the rest. The rheumo quickly dismissed this and believed it to all be connected, that something started on the 2nd of February that would explain the leg and everything else.
Skip to endless blood tests, X-ray scans and other tests later and the rheumo finds raised something (no clue what!) in my blood that is a diagnostic factor of sarcoidosis. He had suspected this based on the symptoms so concluded with him stating it to likely be neurological sarcoidosis that had caused the nerve damage alongside the other nerve related and general issues. Acute sarcoidosis can come on suddenly and intensely which explained how i woke up on the 2nd to a completely different body (and makes me feel less insane about the whole thing!). A good side of it being acute is there’s a good chance in a few years it will go as fast as it came.
I’m adapting to all this and things are getting more manageable, 12 hours sleep, rehabilitation (boring) based workouts, a lot of pain meds. I have days like today that I do struggle (woke up to ulcers all inside left cheek and intense nerve pain on that side) but generally I do okay with it. Focusing on the aspects of your life you can control; work, education, family, is the key for me accepting it and being happy in spite of all the pain (and there’s a lot of it!).
This didn’t end up being MS but I am so thankful I found this forum and to all of your support through it all. It’s been an incredibly scary and lonely journey and all your advice etc has been so much help through it.
Thanks guys,
Rosie
Hi Rosie
Thanks so much for telling us the results from all your tests.
Congratulations on it not being MS. Commiserations of course, that it’s Sarcoidosis. A different autoimmune disease.
And one that’s really pretty rare. But it does seem that it normally gets better over time. I hope it’s months rather than years for you.
It is so helpful when people have gone through all the tests for MS and have come back to tell us what actually caused their symptoms (just like Neil a while back).
Again, get well soon, and thank you.
Sue
Rosie thank you so much for coming back and telling us what it was it is always nice to hear its not ms and your post could be invaluable for someone else out there. I am sorry that it wasn’t a complete all clear for you but I hope and wish that it leaves you soon!! Take care, Flutterby x
Hi all, Im not to sure where to start… So basically I have Crohns disease, I was diagnosed in 2010. So as you can imagine I have always felt poorly. Everytime I would have an episode/attack my feet would go numb. This has always been the case. I also suffer from anxiety. As it happenes just recently within the last 6 months I have noticed that my feet are numb all the time and yhus numbness has recently spread to my hands and up to my elbows (both sides). I also feel very fatigued which I also put down to my Crohns as thats one of many sympyoms. I have wide spread pain through my body along with sciatic pai i my right leg. Then just a week ago I had a sharp pain in the left side of my head that lasted 2 days (on and off) and everytime the pain was presant I had pain behind my left eye. This worried me as it was directed pain in just one perticular spot and was different to me as I also suffer with migraines and have never experienced one like this before. So 4 days ago I went to my GP and explained everything and he asjed if I have an family history of MS as to which I do (my mother) He then immediately made a Neurological referral and said everthing I have told him has lead him to beleieve that it is Ms. I left his room and could hear my own heartbeat in my head and threw up everywhere with fear. I was asked to do blood test before I left. I got the result for these yesterday and the only issue was that my Vitamin D was a little low. Now I have to wait for my refferal to come through…I am petrified and I’m not coping very well at all with what my GP has said to me. Since being told this my numbness has spread from my left hand up my left arm. I just dont know what to do and I keep having mini breakdowns as Ive seen MS forst hand with my own mum eho is completely bed bound. I also have a 3 year old eho I love so dearly and trying to be normal happy mum is proven to be extremely difficukt at this moment in time. I just wanted to upload this as ir feel like such a heavy weight and I dont kow what else to do…
for the past five weeks I have been really unwell. Flu like symptoms, episode of double vision amd lose of sensation on my right side which cleared, then my right eye vision started to deterorate … feeling extremely tired aching amd really bad headaches amd pressure. Finding it hard to do anything. Also not been eating well . I was put on steriods and my right eye vision isn’t as bad now. I had a mri which shows Demilanation patches of nerve damage . Amd bow I had to wait up to 6 months to see a neorolagist for a diagnosis amd treatment :-/. . I feel so unwell . They said to Try exercise amd think positive could have been worse and how I’m healthy young woman amd will live a long life but feel so unwell and so worried if anything else happens especially as iv got two young girls aswell. I’m finding it all extremely hard . As soon as i get treatment i imagine things could be better its just a horrible wait many thanks Top
Hello Dania
(Welcome to the forum.)
Can I just start by suggesting you start a new thread, this is an old one that’s been resurrected, and doesn’t necessarily apply to your post. You start a new one by hitting the New Thread button, above the list of existing threads, give it a relevant title then away you go. The same advice applies to Charallen too.
Your GP is a bit irresponsible if you ask me. S/he is not able to diagnose MS, even given MRI scans and other neurological test results. Only a neurologist can diagnose MS, and they won’t do that without a physical examination and MRI tests, at a minimum.
Having a mother with MS makes it slightly more likely that you could have it, but it’s only a bit more likely than if you didn’t. If your GP knew that your mother had been severely affected by MS, it’s even more irresponsible of the GP.
Yes, it’s a good thing to have a neurological referral. At that point, the neurologist will do a thorough examination and take a complete history from you. If s/he thinks it’s necessary, they will refer you for an MRI scan, maybe a lumbar puncture and possibly other tests. Only then will the neurologist suggest that MS is possible. And an actual diagnosis would only be made once all the test results are in.
There are other disorders that present in similar ways to MS. And in fact one of these is a vitamin D deficiency. You could well find that the answer to your symptoms is something easily resolved.
But, supposing is was MS, about 85% of people diagnosed have the relapsing remitting type. There are many, many drugs which reduce the number and severity of relapses. You are not likely to end up as disabled as your mother.
Try to relax about the threat of MS. Think of it like this. You may not have MS. If you did, you are likely to have the RR type. If that is so, there are drugs to help. You are very unlikely to be severely disabled. And whatever the result, being scared and stressed by it will only make things worse, not better.
You will still be you and still be a fabulous mother to your 3 year old, who is not likely to have to live with a very disabled mother.
Sue
Hi there, I am here because of the countless symptoms I have been experiencing over the past 2ish years. I’m in the process of finally getting a diagnosis . I have had symptoms for a long time now, they are relatively subtle but did begin out of the blue. I will say I have anxiety , depression and PTSD due to a very traumatic health scare after giving birth to my daughter in 2018. Since then especially things have gotten worse. I have odd sensations all over my body, tingling , pain, sometimes it’ll feel like a worm is swimming around in my stomach, “cold” spots, muscle twitching and tightness, fatigue. The most recent and scariest symptom that I’m still dealing with (it’s been about 2 weeks) is the left side of face feels numb…it’s not numb as I still have feeling but it FEELS numb. It’s very hard for me to describe. I went to my gp who ordered some blood work and she asked me to fast track my neurologist appointment. I’m currently on a wait and see approach with him but now that my face is numb I think he’ll be inclined to give me an MRI. I’m very confused & scared about what is going on. I’m hoping to get some answers but I’m also terrified of what’s to come.
Hi all, new to this. Came across this, this morning. I have been experiencing ongoing symptoms for
over 2 months now. I had a baby in December then around 6/7weeks old I felt my first symptoms that to me didn’t feel right. Start with back pain, then I ended up with pins and needles/tingling sensation down my left side, visual disturbances in left eye which I went to opticians about- all clear. I went to my GP and had bloods done which were all clear for vitamin def, anaemia etc. My GP checked my reflexes which he stated were ok, nil weaknesses! My doctor has now referred me to neuro as he feels it could be MS as now do I. Pins and needles/tingling is now all over my body, different places foot, leg upper and lower, face, hands and arms and I get what I can describe is goose bumps over my torso down arms/legs if I itch my stomach where it feels as though I have something crawling under my skin along with jaw pain/ear ache. I am very scared being a new mum and it’s becoming a struggle every day. My doctor tells me due to covid there is a very long wait so not to be expected to see a neurologist anytime soon.
Hi all
I’ve been diagnosed with fibromyalgia for about 10 years now, but I’m not so sure anymore. I experience internal vibrations and my head, virtually every night, makes me feel like I am having vertigo. I have a band around my torso, that tightens and releases at times, but is constant and is uncomfortable as it affects my breathing and creates pain in my back. This band came on over nights a few years back now and I did speak to my GP but she has put it down to FM. Not sure if I should go back to my doctors with my suspiscions, I am no hypochondriac, but just raising it makes me feel that way, as she has said before that I don’t have MS. I’d gladly not have MS but these symptoms, that don’t seem to shared with FM, make me think that it is a possibility. What have been your esperiences? Does what I am saying ring bells with anyone else?
Hi Ktullo 25, how are all your symptoms now? Have you been seen by neurologist yet or had an MRI? My symptoms are all very similar to yours, I understand your scared and your confusion as I’m feeling the exact same. I hope you get some answers very soon
I’m 59 and have hadall the classic MS symptons .Started with numbness in right arm about 18 months ago.Since then I’ve had tingling in the legs and blurred vision.However my symptons last for a few seconds then subside.Longest was blurred vision about 15 minutes.