Not sure if I have ms? Where to start? Lost and confused Welsh Woman..

[GypsyQueen]

Hi to everyone, I'm just here to see if anyone could share some advice with me as I feel I'm going crazy and no one is listening?

I'm 30 and around a year ago was the first time I felt my body failing me in so many different ways. Back and for to the GP, he's said I have fibromyalgia and me. My ankles have been more painful and stiff lately and my legs are shaking coming down the stairs. Legs get so heavy and painful and arms occasionally.

I have a crazy sleep pattern..no pattern at all actually. But I sleep more than anyone I know and still feel like crying I'm so tired. I have no life because of this! I have one hearing aid at age 29 which is young with no hearing loss in the family.

My balance is poor but I don't fall over things..more that I stumble backwards if I'm standing in one place for a while or turn around too quick. I'm dizzy every time I bend down. My hands go hot and painful from just hoovering. Back and neck pain..I could go on for hours..but I won't.

I don't know what is happening to me or where to go if anywhere? Can somebody please help?

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[GypsyQueen]

Oh and the spasms..my new friend

Also I have spasms. Feet, back, top of tummy and thighs. My other problem is remembering things.

[hunterd]

I hate to tell you something that you probably heard over and over but, all your symptoms can be attributed to other diseases also, my advice would be to make a list of all of your symptoms. Make sure that you are 100% comfortable with your doctor and that you have the utmost confidence in them.share with them your list of symptoms and let them explain to you what their findings are. It is only normal to expect to have test after test after test and when you think it is all over, they start again. I wish you only the best of luck!

[GypsyQueen]

Hi hunterd, thanks for replying. Yes there are so many things that could be making me feel like this.
My gps are down to one permanent dr and two locum. The main dr wants to push me out before I sit down. She has no time.
I'm just so confused and done the worst thing (googled my pains) !!
ive had blood test for a load of things but all were fine. No inflammation markers as he thought I may have rheumatoid arthritis. But all were fine.
I don't know where to go from here now?
I'm sure she already thinks I'm a hypochondriac!!
my memory is awful. I even forget to write down what I'm supposed to be remembering lol!

[palmtree]

Let's hope you don't have MS. It's not a diagnosis you want. After the comfort of finding out what is wrong wears off, you will realize you have an incurable disease.

I hope you get medical care you need. If it is MS, there are disease modifying treatments but not much else.

Dr. Google can be dangerous sometimes.

The one symptom you described I can relate to is the losing balance and falling backwards. But the only way to diagnose MS is with an MRI.

[GypsyQueen]

Hi palmtree,
I really don't want any illness or disease..I want to be able to take my kids out for a day without having to spend 3days in bed afterwards.
My parents are practically bringing them up 😔
Ive gone a year without seeing dr Google and now I've done it I'm more confused lol.
Ive had a tingling on one patch of my head on the left for a while..could it be a trapped nerve in my back causing this?
Also get pins and needles down my back and neck.
I don't want to make a fuss but feel I am a nuisance to everybody.
There is never enough time to talk to a GP about everything and some weeks some things are more painful than other things so they are just treating that problem. rather than the whole thing.
Thankyou for replying..it does help to talk 😀

[annedocuk]

As a GP in the UK, I know we are limited as to what tests we can do without referral to a specialist. We only have 10 minutes per appointment! Don't overwhelm your poor GP with too many symptoms, and maybe if he doesn't offer it, suggest an onward referral. An MRI for instance, might answer some questions for you, but a GP can't access one on the NHS.

[GypsyQueen]

I totally understand they are limited to time. I'm just frustrated that I don't seem to be going anywhere after almost two years.
Thankyou for the advice, I will bare it in mind.
I think as there are new Drs in and out of the practise quite a lot, it's making things a little tougher.
Thankyou

[Holly Golightly]

Pob dymuniad da, GypsyQueen.

[palmtree]

Hi palmtree,
I really don't want any illness or disease..I want to be able to take my kids out for a day without having to spend 3days in bed afterwards.
My parents are practically bringing them up 😔
Ive gone a year without seeing dr Google and now I've done it I'm more confused lol.
Ive had a tingling on one patch of my head on the left for a while..could it be a trapped nerve in my back causing this?
Also get pins and needles down my back and neck.
I don't want to make a fuss but feel I am a nuisance to everybody.
There is never enough time to talk to a GP about everything and some weeks some things are more painful than other things so they are just treating that problem. rather than the whole thing.
Thankyou for replying..it does help to talk 😀

I sure hope you can maneuver your way through medical system to get where you need to be. When I needed to find out what was going on I didn't tell them about everything I was experiencing. I just said, "my right leg feels weak." This was the ticket to get an MRI and the rest is history.

[GypsyQueen]

Thankyou. I have been referred to a rheumatologist so hopefully they will help me. I had a blood test and the inflammation markers were fine.
My legs feel as if they will give way every time I go down the stairs and if I stand for more than 10/15 minutes they shake and I feel all wobbly.
Stiff ankles are a problem too..thanks for your advice all x

[Sissy]

I know how you feel, I was hunted for answers for 10yrs. Long story (hopefully shortened)! I fought through 1 test after another. Nothing found, so my GP of 20yrs told me " my body was making me think I was sick"...OK my hubby had enough and fired him.

Next week had a new GP, an older gentleman who listened to my symptoms, and gave me a complete physical. My friend who found him for me and drove me (because I was to dizzy) also relayed my husbands concerns to him. After his observations and tests he said he felt I had reason for my concerns.

I had almost every test they could find to do and when he said I should see a Neurologist for MS. I went a little more dizzy, but was not really that surprised. I'm an old retired nurse and felt it was true but could not get anyone to listen to me. He sent me to one who was an "MS Specialist". He got me in the next week. I had a lot more tests ( ruling out as many things as he could) My daughter was with me and she is a nurse also so she asked a lot of questions that I could no longer think of.

Within a couple weeks he told me I had "Benign MS". I was so glad to have a name for it! I felt like I had a monster that was hiding in the dark, chasing me and attacking me for years. I didn't know what it was so I didn't know how to fight it! Now I had a name for it "MS" so I could fight it!! That was in 2009. By 2011 I
had R.R.M.S. and was put on Gilenya.

I fought another monster in 1987! I had stage 4 cancer 2 times (Melanoma ) and was told I would not live 2 yrs...I'm a survivor That was 26yrs ago..

I'm going to stop my story now because it is to long. I say fight the good fight...find the name of your monster and fight it! Many Hugs and Blessing to you "GypsyQueen"

[GypsyQueen]

Hi sissy, I like stories wow 10 years! And I'm happy to hear you are still fighting strong and spirited 😀
im hoping someone will help me soon.
Sometimes I don't know if it's my muscles that are weak in my thighs or my ankles feel loose like they will go over on the side, or if it's the both.
I also get weird twitches in my head when I look down and my tummy spasms when I lay down. ( I'm a real joy, honest) lol.

Can you relate to any?
Also I had a significant bang to the head when I was 13 which left me with a lump the size of a good sized chicken egg for around 4 months,
Then I had psychosis in my early twenties(without the fun of beer and drugs) and depression.
I wonder if all these are connected?
Thankfully I've not been depressed for a year now despite being in pain and a recluse most of the time.
X

[Sissy]

I'm a diabetic on insulin now due to a lack of mobility I think. I had 2 back surgeries at the same time as my 2 cancer surgeries. So now the drs think its a toss up as to which one they can blame it on rather than admit it could be MS.WHY...

My thighs get so tired, weak and achy. I feel like I have socks on all the time. With a tight band around my ankIes. I can't stay awake to read or write. These posts are killing me. All I want to do issleep.

[palmtree]

Hi sissy, I like stories wow 10 years! And I'm happy to hear you are still fighting strong and spirited 😀
im hoping someone will help me soon.
Sometimes I don't know if it's my muscles that are weak in my thighs or my ankles feel loose like they will go over on the side, or if it's the both.
I also get weird twitches in my head when I look down and my tummy spasms when I lay down. ( I'm a real joy, honest) lol.

Can you relate to any?
Also I had a significant bang to the head when I was 13 which left me with a lump the size of a good sized chicken egg for around 4 months,
Then I had psychosis in my early twenties(without the fun of beer and drugs) and depression.
I wonder if all these are connected?
Thankfully I've not been depressed for a year now despite being in pain and a recluse most of the time.
X

All this stuff may be connected but my advise to you is to leave it out of your medical history. If the doctors see the word psychosis, everything you tell them after that will be ignored.

The symptoms in your legs could very well be MS so I would stick with the physical symptoms like falling backwards and weakness in your legs. You need an MRI but I imagine in the British medical system doctors are under a lot of pressure to limit costly tests. You could go to an MS specialist in a major city of the US and pay cash for it.

This is about money, not about you. There are Canadians in wheelchairs who still can't get a diagnosis.

But if you can find a good neurologist and limit your list of symptoms to one or two, maybe they will help you. I sincerely wish you luck. If they do an MRI and find everything is fine then I would do everything I could to strengthen my health, physically, spiritually and emotionally.