Last reply 1 month ago
In the process of being diagnosed…

Hi there, I am currently in the process of being tested for MS and wondering if people have experienced the same symptoms as me?
So far I have had an MRI scan, which was clear, but am due to have more next week this time with contrast dye. I have also had the Evoked potentials test. If nothing is found in the MRI tests, I will have a Lumbar Puncture.
My symptoms, which all started in October 2018 are as follows:
– Visual disturbances / blind spots in right eye. Things looking too bright when hot or have raised heart rate.
– Numbness / weakness in right arm/hand. Loss of feeling in fingertips.
– Scalp and head pain mainly on the right. Shooting pains on right ear. Excruciatingly pain if I accidentally pull my hair.
– Anxiety, Insomnia, fatigue, mood swings.
– Muscle spasms when drifting into sleep, lower back pain, neck pain.
Does this all sound familiar to anyone? I am seeking support around MS as I am pretty convinced I have it. Pleased to see so much support out there 😀

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mlgilber1
1 month ago

I’ve experienced all the symptoms you’ve listed. Was your first MRI without the contrast? My neuro only did my brain at first without the dye and nothing showed and my symptoms were worsening so I went to the ER. This time they did my spine with and without dye and found lesions so they did a lumbar puncture and diagnosed me with MS. Then, one month later I had a relapse and they did an MRI on both and found lesions. I had tons in my brain that I know some were there before, but they just didn’t show up since there was no dye. I’m glad you’re getting tested. So many things can mimic MS so it is hard to diagnose. Best of luck and I hope you feel better!


daveo
1 month ago

I have definitely had eye problems, numbness in the fingertips, painful patches on my head. Interestingly, I’ve also had I strange spasms when drifting off to sleep, like a dreadful feeling that i was falling (i think the professionals call it Hypnic Jerk) – but i always put that down to something else – stress maybe.

As @mlgilber1 says, the symptoms of MS can be similar to symptoms of other things. Before i had optic neuritis, which diagnosed me, i was seeing a physio to treat my numb fingers because they suspected i had a trapped nerve. I’m sure lots of MSer’s have similar experiences.

Good luck


arla_jane
1 month ago

Thank you both for your replies. It is comforting to know that others are experiencing the same sorts of symptoms and that there are people out there to listen and share ideas with.
My first MRI was without dye so I’m keen to get it done again with the due next week. Brain, head and cervical spine.
Strangely, I am starting to hope for the diagnosis as it would help everything I’ve been going through make sense, and I might get some relief through medication! The scalp and head pains are the worst thing at the moment. Head itches, but too painful to scratch!!
Thanks for your kind words, much appreciated.
Good luck to you too. I am sure if diagnosed I will get a lot out of this site.


mlgilber1
1 month ago

I had tingles on my scalp and face and the itchiness drove me crazy! Thankfully the tingles are mostly gone only get them occasionally. My physical therapist taught me some exercises that helped with the tingles. One thing was just putting two tennis balls that they bound together under my neck for a couple minutes and it gave me the most relief. They said I could just buy two tennis balls and put them in a sock to use. Otherwise they sell something similar on amazon. The itchiness was literally driving me nuts and scratching doesn’t help. I was on gabapentin for over a year and it never helped. I just recently got put on lyrica and it helps control the itch. I can tell if I haven’t taken it because the itch comes back so maybe trying lyrica is an option or gabapentin if you haven’t tried that yet.


jolea
1 month ago

Hi yep all sound like MS. You need MRI with contrast. LP will show MS.
Not sure why brain scan is clear. 99% Have lesions on brain ( I think).
Pins, needles and numbness try a pillow under your knees lying down. Head flat.
Good luck.
MS can take a long time to diagnose. See McDonald criteria.
LJl. 🦋


marcyg921
1 month ago

Obviously all your symptoms do point to MS but they can also point to a number of other conditions. MS is very tricky to diagnose and obviously the any Neuro doesn’t want to diagnose anyone with MS. MRI’s don’t always pick everything up hence why they use contrast to get a better visual but right now take it as good news that your MRI was clear and if you do have to go through a Lumber Puncture then best of luck and I do hope you get the answer you want soon.


jaqueline_walker
1 month ago

Hi I am also being tested My symptoms are almost identical to yours. I don’t have a painful scalp, but my balance is affected and have slight dizzy spells. I hope you find answers soon.


arla_jane
1 month ago

Thanks everyone, the first clear MRI was without dye, so we shall see what the dye reveals. Thanks for the tips and understanding. So weird, I am going through each day managing to work, but not feeling at all myself! I am wondering if there are medications my GP could prolescribe for my symptoms even without the formal diagnosis as it’s all so uncomfortable and I’m relying heavily on painkillers which is not good – literally paracetamol, ibuprofen and sometimes codiene every 4 hours 😵


stumbler
1 month ago

@arla_jane , I regret that your scalp/head pains sound like it could be Trigeminal Neuralgia. There’s some details here :-

https://www.mstrust.org.uk/a-z/trigeminal-neuralgia

I would see if your GP could prescribe something for this, which may also help with the spasms.

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