This Is MS Multiple Sclerosis Knowledge & Support Community

Hi all

I expect you get threads like this a lot, but I'm laying here worrying so thought I'd post and see what you think.

I've been diagnosed with fibromyalgia, but I think I may have MS.

I have a few symptoms, the one that scares me most is the strange tightness on breathing out that I get every night before sleep and if I'm in a hot bath.

I recently went to ibiza. It was 25 degrees c yet I got so hot my vision blurred and I got slightly dizzy so I couldn't stay outdoors in yhe daytime at all.

I'm constantly in pain. All over my body.

A patch of my left breast is numb.

I get strange gloopy disturbances in my vision.

Sometimes I can't think or form words properly but mostly when under pressure or talking to someone in authority.
I get brain fog. I can't remember anything like appointment times and dates or things I need to do without constant reminders.

My fingers hurt and if even just a little cold I struggle to type/hold things.

I'm so so tired all the time. I can sleep for many hours at a time.

There's other things, but these are the main ones. Oh! I'm terribly clumsy too...

A lot of this points to fibro. But the tightness, which is nearly painful is the main thing that worries me.
I mentioned all this to my doc, she practically laughed at me and said well I very much doubt you have MS!
Yet she cannot think of an explanation for the tightness at all.

If I do have MS then I just want to know so I can deal with it. And if I don't then I'd like to know what this tightness is so again I can deal with it.

I'm sorry for posting but maybe someone can help?

Thank you

C x

Hi,

That's a very clear description. Well done.

Fibromyalgia and MS can have some symptoms in common. There can be lots of things going on.

Just for the symptoms you have described you could try what I do to treat them.

Buy a good brand of Coenzyeme Q10. It must be in a gel capsule and ideally have d-alpha-topopherol (Vit E) in it. Start at 150mg each night and add a further 150mg every second night till you get to 600mg and stay at that dose. Also buy some aceytl-l-carnitine and take 1000mg morning and night. I do a lot of other things as well but this is what I do for what you have described.
In addition, you could take some magnesium tablets.
What we are trying to do is boost how efficiently you make ATP within your cells.
Why you are in this state is the real question. Your doctor should be looking for low grade infections such as mycoplasma and chlamydia, looking for nutritional deficiencies in vitamins, doing a fasting amino acid panel to look for deficiencies and checking your purine metabolism by doing a uric acid test.

Regards,

Doim86 wrote:I've been diagnosed with fibromyalgia, but I think I may have MS.

I have a few symptoms, the one that scares me most is the strange tightness on breathing out that I get every night before sleep and if I'm in a hot bath.

I recently went to ibiza. It was 25 degrees c yet I got so hot my vision blurred and I got slightly dizzy so I couldn't stay outdoors in yhe daytime at all.

Welcome to ThisIsMS, Doim86.

In view of the following video, I suggest you see your GP, ask for a vitamin D blood test (the "25-hydroxy D"), and request your own copy of the test results – it is important to have the actual number.

Misdiagnosed Vitamin D Deficiency (9 min.)
with James E. Dowd, MD, FACR, ABIHM:


Interviewer: Because of what you said where a lot of doctors still aren't seeing this as a need to get tested for, vitamin D deficiency is probably still misdiagnosed as a number of other things… Is that correct?
Dowd: Yes, it probably is overlooked in a number of different diseases. Chronic pain, something that's rising significantly in the United States right now. There was a study that was done looking at chronic pain and they found that patients who had low vitamin D levels, below normal, were using twice as much pain medication as the patients in the pain clinic who had normal vitamin D levels. So there's a correlation there with how much pain you experience among patients with chronic pain.

@0:55 Another example of a disorder that is sometimes misdiagnosed and is vitamin D deficient is fibromyalgia, which is one of these chronic pain disorders….
@1:25 I'm not saying that everybody with fibromyalgia has vitamin D deficiency, but probably 70% do because 70% of the population is deficient.

@1:43 There are occasional patients with fibromyalgia where that is the primary driver of their pain and fatigue and misery; and when you correct that they get dramatically better.…

Interviewer: Could a person be deficient and not really know it? And is there any harm in that?
Dowd: In fact, most patients who have vitamin D deficiency don't know it – either don't know it because they don't know what symptoms are associated with deficiency, or they don't know it because they just feel fine and they've never measured… Symptoms unfortunately are often a fairly late sign in any disease process or deficiency or imbalance. Just because you don't have any symptoms doesn't mean that you're not at risk.


Doim86 –Although you have recently been to sunny Ibiza (and may even live in a sunny climate), it is still possible to have a vitamin D deficiency. Vitamin D deficiency can result in symptoms like yours. A simple blood test can rule it out as a possible cause.