Hi there everyone,
My name is Andy, I’m from the UK. I’m hoping this is ok to ask here, because it’s not about myself. It’s about the person I love, who I am currently separated from. Who lives in California. He suffers with so many different things, that over the years he has felt like it could potentially be MS.
Ever since I’ve known him, he has always been in pain. Which was identified as what they think is Fibromyalgia, which took nearly 2 years of visits to his doctors. He also developed constant headaches around that time, and still suffers with them years later. Over the last few years it’s gotten worse, where he gets fatigued easily, he gets blurry vision in his right eye, he suffers with bladder pain that makes it difficult to even bend down to pick things up, he does have problems with going to the bathroom, and he has numbness and loss of feelings across different parts of his body. These are just a few of the symptoms he goes through.
He has always felt like it isn’t fibromyalgia, that it might be something else. He’s had blood tests and MRI’s that come with nothing showing. However with his more recent symptoms that have been causing him issues, I’d been doing researching and a lot of what he goes through seems to match up to MS.
I wanted to ask on here, because I want to know if anyone else has experienced this where they have symptoms but they never got a diagnosis, or if anyone has any suggestions on things that might help to ease some of what he goes through. I want to be better prepared in case he does get diagnosed with it, and know what might help.
Thank you for your time and for reading
–Andy.
Tell him not to give up. I’m in the States, too, and it took me 40 years to get a diagnosis. My MRI’s were clear until suddenly they weren’t, but my symptoms had been consistent all that time.
Suggest that he try different neurologists and a rheumatologist. Whether it’s MS or not, sooner or later someone has to recognize what’s going on with him.
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Thank you so much for the reply NorasMom! I’m sorry it took so long for you to get a Diagnosis. I’ll definitely tell him that, I’ll see if he is covered for those. I don’t know if Kaiser is a thing all over the US or if it’s just specifically California, but he has a lot of issues getting stuff done with them.
Hi Andy i am sorry your partner is in so much pain, and scared too.
If your partner lives in the US i thought their criteria for diagnosis of MS was better then ours in the uk.
OK how old is he? the reason i ask is his symptoms could be PPMS. I had non specific weirdness when mine started especially in the eyes, i actually had ON without realising it (optical neuritis).
Has he had MRI of the spine? Mostly PPMS lesions are found in the spine.
everyones MS is different no one has the same. His bladder issues are typical of MS BUT he could have a blockage or problem with his uretha anything. I would think he needs to see a urologist about this.
Beleive me you are never prepared for a diagnoses of MS ok. Informed but not prepared as MS has its own ideas. I honestly think he needs to go back to neurolgy and have spinal MRI if he hasnt already. if the spinal MRI is clear and nothing on the brain, then i would look at other specialist as nora mum said. I have always maintained if it is MS one day it will make itself known. from the beginning i had ON, and left side weakness, bladder issues, and other weird stuff lol. However from 2006 when i started with neuro i had lesions on spine, and VEP test positive for bilateral ON.
Its good you are worried about him, but google can leave you chasing the tail. there are many people i have met who have his symptoms and not diagnsoed, and many who were with other things. i think he needs to see a urologist, and a neurologist, as obviously something is going on. also he needs to keep healthy, no processed and fat foods, cut sugar back, lots of the good stuff, eating the rainbow lol, making sure his vitimin D is good. anyway good luck.
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I should’ve asked if he has a good GP. I was fortunate enough to have been with the same family doctor since I was 22, and she was instrumental in referring me to various doctors when I’d hit roadblocks. She’s the one who sent me for my initial MRI’s, and then we tried several different neuros before finding one who would actually take me seriously. We don’t have Kaiser in my part of the country, but I’ve heard horror stories about their lack of coverage.
When I finally got my diagnosis, I had both old and new lesions on my brain MRI (which is strange, because the one from 4 years before that showed nothing at all). There were no spinal lesions, but a lumbar puncture showed definite signs of MS. They wouldn’t diagnose me until that point.
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Hi NorasMom! He’s had a few GP’s over the years with moving back and forth a few times, he’s been with his current one for a good few years. But he’s not the best.
Is the Lumbar Puncture the test where they take fluid from your back? He’s mentioned that to me before, about maybe needing to get it done but he’s scared to do it.
Hi there Crazy_Chick thank you for the reply!
Yeah from when I’ve been out to visit him, and I’ve gone to the doctors with him. It was for other conditions, that might have seemed separate but they could be linked. However when I’ve been there, it was never to check for MS.
He is 31 as of January this year, it could be possible that he has Optical Neuritis. It is only in one eye that he gets the vision loss. When that started happening, it was after an eye exam and he got new glasses. So we thought his eye just needed to adjust, so he left it a few weeks and it didn’t get any better. So he went in for another eye exam, and she said it came back clear. But his vision was still blurry in his right eye. She got him a new prescription ordered in case the right lens was faulty but those were the same too.
I’m not 100% sure if he’s had an MRI on his spine, I know he’s definitely had an MRI but it was years ago. I can ask him and see. With his bladder, he has been to a Urologist. I was there initially but I came back to the UK, and he had a bad turn while I was away and I think they did a test on him based, it might have been an ultrasound around that area. It wasn’t a camera test.
Oh yeah definitely, it’s why I wanted to ask people who have gone through it directly. As you will all have a better understanding than just googling the symptoms. So I appreciate everything you’re all telling me on things to suggest, and the sort of things you all went through to get your diagnosis.
In reference to vision tests, I had a bad experience with the ophthalmologist. I’d developed double vision, eye pain, terrifying head rushes, and after the exam he just said that my eyes and glasses were fine and then walked away. He had no interest in trying to find out what was going on with me.
The lumbar puncture (“spinal tap”) IS the one where they stick a needle in your spine. I was absolutely terrified before mine, because many years ago they talked about how excruciatingly painful it was and that you have to lie perfectly still or risk being paralyzed. Apparently it’s not that dangerous any more, and it really wasn’t too bad.
You have to drink as much as you can hold during the 24 hours before. They had me lay on my stomach with my head on my arms, numbed a section of my back, and I really didn’t feel the needle going in. At random intervals during the procedure I would get an uncomfortable mild shock, but it was tolerable. A nurse sat at my head and kept me talking through the whole thing. When it’s all over, they have you stay in bed for an hour or two while they make sure you don’t have any problems (none of which were described to me). It might be something for your friend to consider, but I’d suggest having a new MRI done on both his head and spine first.
he needs a VEP test. now you can google that lol, go to youtube there is a very good video about vep TEST and MS. If he has ON it will show. if his optic nerve is affected it doesnt make any difference to eye test. I have literally thought oh no more glasses, gone to see optician to be told your eyes are fine. the problem is in the brain to the optic nerve. I have a lesion there.
peripheal vision can be affected and colour spectrum. for example i thought i had chosen grey loungers to wear and when i got them on i realised they were dark kind of green lol, ah well no one sees me so i didnt bother. if i want to decorate i have to ask my daughter to choose the colour. i am bad on red and green.
it sure sounds like an onset of something neurolgoical. if his bladder was clear with urology (mine was too but i swear i was having a uti a month) those are pointers. PPMS is spinal MS, it tends to affect eyes (ON) AND lower limbs. It doesnt have relapse or remission and this is what confuses neurogolists as believe it or not some havent dealt with it as its quite rare. /read my journey it might help you to understand more. this is out of the horses mouth THE OLD MARE lol.
my journey and on going blogs so it is long lol. but the first part is the part you might find interesting. The beginning – My Journey begins in Brazil. – My Journey with MS
HE your partner needs new MRI one of spine would be good, possibly enhanced. but i feel he should be tested for something neurological. as to yourself to get prepared like i said you can never be fully prepared, but your parnter will never be the person you fell in love with if he does have MS. I changed totally from a strong women, to one who can just about get out of bed, i had tantrums and change in personality, i lost the will to live, i hated the world, and my anger was ridiculous, depression on going but all this is down to the MS.
MS screws with our emtions.
take care he will be ok, he has you walking by his side. x
Hi NorasMom, sorry for the late reply!
That sounds horrible with what you went through with the Ophthalmologist.
I mentioned to him about having new MRI’s done, to see if that is possible. He’s going to look into it, and then see about doing the Spinal Tap. To see if that shows up anything.
Hi Crazy_Chick! Thank you so much for this, I’ll definitely give your journey a read, it’ll help understand the process more and how it can affect people differently.
I have noticed some personality changes and things over the years, but I still love him all the same. I can’t imagine what he’s going through, even if it’s not MS. He does have a lot of pains and problems, that would definitely cause depression, irritability and other things.
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