I think I have Ms and no diagnosis

[Faye-red]

I’m really starting to think I have Ms and getting stressed about all this waiting.

I had a brain mri a year back (with no contrast) because of my bad headaches and feeling off balance, it just showed sinus inflammation and nothing more.

but my symptoms are pain in the back of my head around the base of my skull and stiffness

Eye twitching and random head shakes

Right side facial tingling or feeling like something is pulling on my face

Feeling off balance, dr prescribed betahistine

Hypnic jerks constantly

A random body jerk when awake

3 times now I have had a feeling of numbness and tightness around the right side of my stomach and through to my back, it’s the weirdest thing ever, the first time it happened I thought was a mini stroke or something, but it’s happened 3 times now and lasts about 1 minute

I’m 35 female

so my question is really if the brain mri that was looking for a cause of headache was normal could I still have ms if this only showed sinus inflammation

in on a waiting list for a neurologist but it’s 18 plus months and feels like forever

does this sound like ms to you? I’d really appreciate any help

Thankyou ❤️

[starlight5]

My ms was confirmed with a cervical mri and then an LP. I have few brain lesions, with most being cervical and thorascic. Perhaps your PC could order a cervical mri, rather than waiting 18 months on neuro. The abdominal tightness sounds much like an ms ``hug`` I hope you find answers soon.

[Faye-red in reply to starlight5]

Thankyou so much for your reply.

How long in total did your diagnosis take? X

[starlight5 in reply to Faye-red]

My PC believed right away it was ms but the neuro missed the lesions on the brain mri and brushed my systems off. My PC then ran lots of bloodwork\tests to rule other things out. I finally saw a different neuro who ordered a cervical mri and was diagnosed almost immediately. I guess it was about 7 months to diagnosis. I then saw an ms neuro to confirm before starting a dmt

I had had a cervical mri 4 years prior to all this and the ms lesions were missed then also. Whether it turns out to be ms or something else causing your symptoms, getting a second opinion is always a good idea.

[Faye-red in reply to starlight5]

Thankyou so much for your reply I really appreciate it. I hope the dmt is helping you x

[Frances_B]

If your MRI did not show any abnormality or areas which looked like MS lesions when the radiologist reported their findings then it is unlikely that you have MS. It's important to keep in mind that multiple symptoms can have multiple causes and while MS is a weird beast which can throw up some strange symptoms, those you have described are not likely to be MS given that your MRI results did not show any abnormalities consistent with MS. For example, the pain in your neck/ back of your head and the stiffness could easily be due to postural issues with too much use of technology (e.g. computer work all day or too many hours peering down at a mobile phone) or various other causes. Facial tingling could be a palsy or a pinched nerve.

As another example - if you are following a vegan or vegetarian diet and do not have sufficient knowledge to compensate for the removal of entire food groups from your diet then there is a possibility of a vitamin deficiency e.g. Vit B12 deficiency is getting more common amongst people who are vegetarian or vegan but don't have sufficient nutritional knowledge and a B12 deficiency can cause neurological symptoms.

It's also important to be aware that just because you read or someone tells you that a symptom sounds like or is the "same" as an MS symptom it does not necessarily mean that it is an MS symptom.

You need to talk to your GP about your concerns and see if they can escalate you on the waiting list for the neurologist, or refer you to some other specialist who can assist with finding out if you do have some issues which need to be addressed/ treated.

[Faye-red in reply to Frances_B]

Thanks for your reply

My b12 is normal at the minute and I’m not vegan

So if they wasn’t looking for ms? They would still see something that showed ms? The symptoms have just got worse since having the mri a year ago,

Do you have any idea what this tight numbness could be that comes round my stomach on one side, it’s really stressful and getting an appointment with my dr is so hard!

Thank you

[NorasMom]

Any chance you can go private? If you're waiting on the NHS, you're just going to have endless waits for everything.

[Faye-red in reply to NorasMom]

I’ve had a look into this but I’ve seen there’s a waiting list for neurology appointments private , I could afford a consultation etc but not mris and treatment private x

[kdali]

Welcome! Yes, the MRI is gold standard for diagnosis. You will likely have another scan after you see the neurologist. Sorry the wait is so long.

I get really twitchy, jerky, or tingly and have headaches when my electrolytes are low. I take magnesium regularly now.

I use to have tension headaches, which are quite painful. I had a massage therapist for a while and she really helped my head/neck.

Maybe you could try these things while you wait.

[Faye-red in reply to kdali]

Thanks so much for the reply. Is the twitches etc MS or low magnesium? How much a day do you take? I’m definitely going to give that a go x

[stepsforNeeC]

Hello dear, I’m sorry you’re going through this, having symptoms without definitive answers can be “pain asking and stressful.” Please try to find another Neurologist who can see you sooner than 18 months!!!! Sometimes I think medical practitioners who have a large patient base let new potential patients “fall through the cracks.” Don’t give up! My church just had a Women’s Health Symposium - “Know Your Numbers.” Prominent Women Doctors spoke in reference to unfair health equity for women. This is a real issue at times, don’t be discouraged please continue to get the answers you need! Praying 🙏 for you ❤️. NeeC

[Faye-red in reply to stepsforNeeC]

Thanks so much for the reply x

[bxrmom]

Faye-red when you had your MRI, did they do contrast? I'm sorry you are going through this, its so hard when you don't have answers. Keep us updated when you can.

Blurred vision was my first symtom. Say an opthamologist who tried to say it was my antidepressant I had been on for years. After arguing with him, he sent me for a brain MRI. The brain MRI said it looked like MS but I was then referred to a Neuro who did more scans, spinsla tap, bloodwork and Evoked Potentials. Spinal tap was the confirmation of my MS.

[Faye-red in reply to bxrmom]

No it was an mri with no contrast, and it just said it showed inflammation in my sinus, they wasn’t looking for ms, it was to figure out the cause of headaches. Since that is when all of these bizarre symptoms have happened that I actually sound odd when I try to explain them 🙃 how long did your referral take x thanks so much for the response

[sashaming1]

Sounds like it but a check of spinal fluid is another way to test for MS. An MRI doesn't see all of the brain. I understand that there are Spinal MRIs too. There is also a physical test I hear (the McDonald test?).

[Faye-red in reply to sashaming1]

Thankyou! Il definitely look into this x

[Raingrrl in reply to sashaming1]

sashaming1 …the McDonald criteria is the gold standard for diagnosing MS. It is NOT a specific test but diagnosing guidelines and criteria.

[sashaming1 in reply to Raingrrl]

👍

[mrsmike9]

Your symptoms are nothing I've ever had. This does not mean that you don't have MS, but I do believe you probably have something else. Good luck!

[Faye-red in reply to mrsmike9]

Thanks x

[Tita_G]

I recommend getting a brain, cervical and thoracic MRIs with and without contrast and get and spinal tap/lumbar puncture. Mine showed activity in all 3 and my spinal tap confirmed it for sure. Good luck and move quick. This disease can do damage if you give it a chance.

[Faye-red in reply to Tita_G]

Thanks so much for your reply, could I ask what were your symptoms before seeking help and diagnosis x

[Tita_G in reply to Faye-red]

My first symptoms were numbness from my waist down. My legs were very weak, I couldn't walk. I had a lot of pain in my legs and I had what I call "brain pains". It felt like my head was being stabbed. I also had headaches like you described in the back of my head and sometimes the sides. My orthopedic surgeon sent me to see a neurologist and the neurologist ordered all of those tests for me. I was diagnosed with PPMS. I still don't walk and it's been over 4 years. I still have the pain and numbness and weakness in my legs. Headaches are much better but I still get the random occasional stabbing pain. I really hope your experience is not like mine. That's why I'm telling you to move fast.

[Faye-red in reply to Tita_G]

I get the stabbing head pain too like an electric shock. Do you ever get tingling in your face or a tightness squeezing feeling in your stomach, mine is mainly on one side at the minute.

So sorry you have been through all of that and hope your coping ok x

[Tita_G]

I get face numbness and numbness in my tongue sometimes but nothing major. That tightness is known as the MS hug. I get it all the time in varying severity.

And thank you! I'm used to it already. Sometimes it really sucks but most of the time it's fine. It could always be worse.

[Wheelof]

My personal experience it took a year and 80 medical appointments.

[Faye-red in reply to Wheelof]

That must have been so stressful x

[wowzors77]

I would suggest full MRI as well. The tough part about symptoms is they can be widely different. In my case I originally went to the ER for a CT because I thought my organs were leaking inside me. My right side was burning and it felt like fluid flowing down into my legs. I also had pins and needles in my feet. I do also get the “electric shock” feeling and also a stabbing pain in the side and top of my head. Other symptoms can also be constant muscle spasms and unexplained weakness even though blood work shows good values for b12 and vitamin d and magnesium.