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Sad:( and Scared;-(

HI all

I am have a question… I have had symptoms or 2 years,I have had many blood MRI’s EMG’s CV etc etc. The symptoms I have are not constant not everyday I get breaks for a week somhetimes two of pain in my thighs that can hurt to the touch. I have muscle cramp feeling in my calves. I have eye pain from time to time never been dianosed with optic neutritis. my uper arms hurt and feel weak. I get burning in my knee thighs and arms. Ilso get air hungr. I cant think straight alot. Short term memory loss. These symptoms have gone onfor two years and no diagnosis.So I am wondering how long it too for diagnosis? dDo thee symptoms sod like MS??? New sympotom is right ankle feels weak… Im a 36 yr old female.

Thanks or any info

Cyn

Hi Cyn, So sorry to hear you have been having such bad symptoms.

As you probably know, MS can be very hard to diagnose, especially if the MRI is clear. Have you had a lumbar puncture?

There are actually hundreds of conditions that have symptoms similar to MS so it’s possible you have one of those.

What are your GP and neurologist doing next? Have they suggested anything?

Sometimes it can take years before they can diagnose. They really need to see lesions showing on the MRI and possibly do a lumbar puncture to see if the immune system has been active in the central nervous system (which is in your brain).

You symptoms do sound like MS BUT they also sound like ME (also known as Chronic Fatigue Syndrome) and Fibromyalgia. Google those and see what you think. Sometimes (unfortunately!) we have to become our own researchers!

I hope this helps a bit… but believe me I know what hell it is to have symptoms and no diagnosis. Have you tried going on the New Diagnosis and Undiagnosed board on this forum? Plently of people on there in the same boat… and you might get some useful info on there.

Thinking of you,

Pat xx

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Hello Cyn,

All through the eighties I had doctors humming and ahhing about my early symptoms. It was very frustrating knowing that something was amiss but no-one could actually do anything or make a solid diagnosis. It wasn’t their fault, it was just too early to tell. The best advice I can give is to have a look at the symptoms described on this site and as Pat says, use the forums.

Best wishes, Steve

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Thank you both for your replies. Im so frustrated. Its going on two years and its all too much at times. The pain is surreal at times. I get so depressed from all this. I will take your advice and its all appreciated… xoxo

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Can you ask your GP to refer you to a pain management clinic? A friend with ME is greatly helped by this. Until you get a diagnosis you need to address the immediate issue of exhausting and depressing pain. Good luck.

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Hello Cyn,

so sorry you are having such an awful time…I do hope you get some answers soon.

thinking of you,

nina x

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I dont take pain meds yet. But I am very close. I have been tormented for two years with pain and it gets pretty intense. So thank you all for your time… Xoxo Cyn

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Cyn there are medications for pain and they are prescribed whether you have a diagnosis or not. It’s unacceptable for your doctors not to treat your symptoms. Pat mentioned lumbar punctures, that may be the route to go as that often helps with diagnosis. If I were you though I’d see my gp or Neuro and ask for proper pain killers, you should not be allowed to continue struggling on as you are. I hope you get answers and are made comfortable, please let us know how you get on.

Cath x

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Cyfer, I so agree with Cath. Nobody should just put up with pain these days. Get yourself some good pain killers from GP or neuro!

Let us know how you get on,

Pat xx

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