Does any one suffer with MS on here?

[itslea]

Hi I was hoping there would be somebody on here to give me some advice of there first symptoms of MS.

I’ve wrote on the MS society page however there doesn’t seem to be many conversations.

I’m wondering if what I’ve been experiencing is MS!

My symptoms have been progressive yet I have periods where they disappear.

Recently I’m getting and insatiable itch on my brain. Yes my brain! It sounds. Crazy but no matter how much I scratch scalp red raw it’s not getting where the itch lays and that feels on my brain.

My left arm has been numb for the past two day my fingers are cold all the time and toes. If I’m on the computer I can’t seem to move my fingers where I want them to go.

I seem to be having hand to eye co ordination problems. I’ve missed the side a few times trying to pu a plate down. Leaving me thinking, how have I done that again?!

I have aches and pain through my legs arms and hands and arthritis has been ruled out.

My hand tremor a lot. I don’t notice when they do it any more but other people do.

My headaches feel like my eyes are going to pop out of my head

And my memory is atrocious.

I’m 33 2 kids and currently dealing with endometriosis so I’m on amitriptyline to manage pain with naproxen.

Any advice welcome.

Thanks for reading 😝

[Hidden]

Hi

I'm sorry but I don't know if anyone with Ms but I did years ago, the worst thing for this man was tunnel vision. I'm not sure what other symptoms he had.

Had anyone suggested fibromyalgia to you, it takes a long time to diagnose. Please take care of yourself Lynne

[itslea in reply to Hidden]

Yeah my best friend has fibromyalgia. It’s doesn’t seem to match her symptoms. It sounds strange but I feel like my head isn’t communicating with my Body like it should.

As I’m typing, I’m really having to concentrate on moving my thumbs to each letter and they feel heavy. That maybe because it’s 11.43pm hahah i dunno 🤷🏻‍♀️😩🙈

Thankyou for your reply Lynne

[Hidden in reply to itslea]

You are very welcome. Do you have brain fog where you forget things easily, can't write properly, your mind goes blank etc, well that's me plus many more things!!!! Please take care of yourself Lynne

[Hidden in reply to itslea]

Maybe look at Sjögren’s Disease - it can mimic MS and so can Lupus and Vasculitis. My Sjögren’s brings similar symptoms to those you describe. hopkinssjogrens.org/disease...

[Coastwalker in reply to Hidden]

Many with fibromyalgia are finding they have Low/deficient vitamin B12 bloods or low thyroid, (or both) also other vitamin and mineral deficiencies can also be linked, which can go hand in hand.

[Hidden]

You might find posting here helpful: healthunlocked.com/mymsaa/a...

[Coastwalker]

Idea only - Get your vitamin B12 ruled out, because low or deficient vitamin B12 symptoms can be identical and highly linked to MS, or partial cause of it.

Those with MS often find they also have low or deficient vitamin B12bloods.

Not saying you have this, but well worth checking and ruling vitamin B12 out to start with.

Many patients with diagnosed MS later find their MS was actually a vitamin B12 deficiency, (these patients tell their stories.)

B12 deficiency is often overlooked by the medical system.

Also check your vitamin D levels too, they can go hand in hand.

You can have your own bloods privately checked if need be.

*If you do get your B12 bloods checked - Do not supplement vitamin B12 until B12 bloods are taken as it can skewer results and you will find it very difficult to prove later if you do have B12 deficiency.

[itslea in reply to Coastwalker]

I had my bloods checked and the only thing low was by b12 but the receptionist lol said the dr was happy with it being low. I dunno something defiantly not right.

[Coastwalker in reply to itslea]

Hi itslea,

Being low in range with B12 can still cause B12 symptoms.

B12 symptoms are very similar to many MS symptoms.

Your many symptoms you have given on your post are also those found in patients with low/deficient B12.

Drs are well known for over looking vitamin low or deficient B12.

* Idea only

go onto the Pernicious Anaemia Society (also for those suspecting low or deficient vitamin B12) on here (Health Unlocked) and ask those members the same question as you posted on here. They have a symptom checker you can use.

*Idea only,

Buy Sally Pacholoks’s brilliant book ‘ Could it Be B12, an Epidemic of misdiagnosis. Sally and her husband both worked in the emergency department of a hospital and realised far too many patients were being over looked that had a vitamin B12 problem. There is a section in Sallys book called ‘Is it MS or B12 Deficiency’ ? One diagnosed MS patient discussed was told her B12 bloods were ’Normal’ (But they were actually in the gray zone)

*Sally also made an award winning film of her life story about B12, which you might find on YouTube.

*You tube - Dr. Chandy and B12 Deficiency. (a clever Indian Dr who could spot a B12 deficient a mile away, ) his licence was taken away because too many of his patients treated for vitamin B12 recovered.

Another famous paediatrician Dr. Carr got very weak, lost his eyesight couldn’t walk or swallow well and almost died from B12 deficiency. None of his 30+ Dr friends or colleagues knew what was wrong with him, he was misdiagnosed , but thankfully after a long journey to see a clever Dr who spotted his B12 deficiency right away he was saved, but had a long climb back to normality. His story is in Sallys book.

Low/def B12 also needs to be checked for anyone with Parkinson’s

Altzheimers, chronic fatigue, low thyroid and many other illnesses especially those with nerve/neurological problems.

Dr might be happy with your low B12, but I certainly would be querying a low in range blood (the grey area) especially if you still have presenting MS/B12 type Deficiency symptoms.

Another site to ask your question again on is ‘Thyroid UK,’ another community site here on Health Unlocked. They are very good with blood results such as vitamin B12 and can help you with other bloods you might also need testing that might have been missed out.

[itslea]

Thank you so much for all of your advice