Please help - Normal MRI, can it be RRMS/PPMS?

Hello All, firstly I would like to thank you for taking time to read and reply to my concerns. I will try to exlain as much as I can

I am 36 yr old Male and my symptoms started in 2016,

2016 symptoms - I have problem walking from my right leg, it seems I have to put little more effort on my right leg, also right hand I have issues in finger and I feel like typing or writing I have to add more effort. Little tingling and burning sensation some times in right leg and hand which will last for couple of seconds. The symptoms improved once I went to India, but after I came back to Michigan the symptoms came back in few months.

2017, 2018 - Same symptoms as 2016 and did get resolved for couple of months and than started again, sorry do not remember the exact date started and for how long I did not had any issues

2019 - symptoms started in May in right leg same as in 2016 and then in right hand and are still there. Also, I felt like I am seeing double and did go to the eye doctor and she did some test, with Gods grace all test where normal. I am having tightness in neck right side only and have pain in back of my head right side only

Also, I feel like some wierd sensation on tip of my tongue , hard to explain and I do feel that I sometimes now have problem speaking, but people around me has not noticed that.

I have been to almost 4-5 Neuro had MRI for Brain and complete spine in 2015, 2018 and 2019 and EMG , VER in 2019, with Gods grace all the reports are normal.

All blood work has been normal.

Can this still be PPMS or RRMS? Can someone have normal test and also, can MS be only on one side of the body?

Thank you again for reading and taking out time to reply

I posted on PPMS forum beofre, not sure if I was suppsoe to post it there or here, so posting it here again.

Hi AKK, well now…you`ve had all the usual tests for MS and other neurological conditions. Neuros can only go on what results tell them, to give a diagnosis. Some of your symptoms could be down to MS…RRMS and PPMS are quite different. RR can come and go but PP stays and progresses without let up. Has your neuro said what he will do next? Boudica x

thank you so much for the reply Boudica, my symptoms improved for 5-6 months in 2019, it started back again in my right leg when I changed my house and did some lifting and also walked for 5-6 hrs at a zoo, not sure if it was due to lifting or walking for long and than latter my right hand and right side of neck. My neuro has prescribed me medicine for Fibromylgia and I will start that once I come back from India, as usually my symptoms go away when I go to India. But from my understanding Fibro is on both side and not 1 side of the body. I have had all the test back to back repeat for almost 4 years, if it was MS would it had showed by this time. I know stress is the worst enemy for anything, but I tend to keep on thinking all day about this.

Hi again. I don’t know anything about fibromyalgia…except that it can mimic MS and is very painful. Enjoy your trip xx

Hi AKKi07. I have fibromyalgia and ms. The thing with fibromyalgia is that you never know from one day to the next what is going to happen. One day you could be fine and the next day you could be in lots of pain. It can affect both sides or your body but not usually at the same time.

thank you for the reply Deb, I have met 3-4 Neuros and they all say the same thing that they have not seen a case where MRI has been normal for MS, neuro said something should have showed in MRI or neurological exam they do. I have also been to University of Michigan and it is considered to be pretty good for Neurilogy, not sure very tendsed

Interested to know why they get better in India? I can barely travel to the local shop lol. Is it because your having fun or meeting family or something and not bothered about your symptoms? forgive me i just found it odd.

fibro. https://www.healthline.com/health/fibromyalgia/fibromyalgia-tender-points#acupuncture-treatment

as to MS you would have something either on spinal MRI or brain but some people dont get proof until they have been ill for several years. I had on spine stuff on brain . and two positive VEPS but still took 16 years from onset of first strange symptom to be diagnosed. It could be you will be the same. so perhaps just go to india enjoy and forget it for now. I keep saying if it is MS it will eventually show itself and you will know for sure.

Fibro well both my daughters have been diagnosed with it lol, and neither are the same. expect both get neck and shoulder ache really bad and sleep badly.

plus most of their friends seem to have been diagnsoed with it too.

Anyway enjoy your trip to india it was one place i would have loved to have to go visit. x

I know it is easier said than done but try to relax. Getting tense and stressing out will make things worse.

Hi Akki

I think you’ve had enough tests and seen sufficient neuros to be fairly confident it’s not MS, of any variant.

Possibly going to India it’s the warmth or the food that makes you better? Or as others have said, it’s being with friends or family or just in India - theres something about India that just makes everything seem better. (Even though I’ve said I’m never flying again, each time my husband says shall we go back to India, I’m tempted!) Certainly the change of food can make a huge difference, just the freshness of spices, or the fact that you might eat much more vegetarian food?

Maybe you just have to relax, trust in time that will give you a definite diagnosis. Plus, if you’re better in India, spend as much time there as you can?

Sue

Hi Mate

Your symptoms sounds very consistently with mine although mine only started 4 months ago. I am clear on brain and bloods and awaiting the spine scan and lumbar. No firm commitment from the neurologist but the suspicion is Fibromyalgia and or FND. It might be worth exploring those 2. Interesting that your symptoms did disappear for a period. Would love to have a break from this even if only for a few months.

kind regards

Jonathan

thank you for your reply, I will try to keep positive and not think much about it, it is so hard to expain to people what you are feeling and hardly people understand. I dont blame them either

thank you for your reply Sue, will try to stay positive, I have another neuro appointment tomorrow and will see that he has to say. It is so hard to expalin to any of your relatives what I am going through, I feel there should be a plcae where you can say what you want to,so I like this idea and good to discuss with people who understand. Thanks again

thank you for thr reply Jonathan, I did read your post on your sysmtoms, your symptoms sounds like what I have on my righr side of body, for me my neuro diagnosed me with Fibro without any trigfer point test, I think it was on basis of my symptoms and normal test (MRI, EMG, NCV, VER). Please keep me posted on your results and good luck.

thank you will try to be positive

thabk you foe your reply Boudica

Hi AKKi07. I am surprised your doctor didn’t do at trigger point test, even if your symptoms pointed towards fibromyalgia. One of the criteria of diagnosing fibromyalgia is that you have pain at the trigger points for several months before they diagnose it.

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