Last reply 6 months ago
Not yet Diagnosed where do I go

Not sure what to write…
First event in August 2017.
As yet i haven’t been diagnosed with MS even though the MRI show the lesions (inactive at the moment) and have been since October 2017. I had symptoms for which the neurologist advised i could do a course of steroids. I did the course and things settled for a short time. It helped briefly and some of the symptoms returned.

Now April 2018 and the last 2 MRI’s show no more lesions and not activity, which is good but i am still getting symptoms. At the moment i have calf burning spasms and twitching, the twitching also includes the left shoulder and hand. at night the calf twitches and i get a little spasm (kick out) and randomly through out the day. The spasm in the hand and shoulder is just random anytime. I have learnt to accept this.

the newest symptom is burning in the finger tips on the left hand.
Just had visit with Neurologist and he concerned that the symptoms are still happening and he fells they should have stopped with the steroids. I understand it can take sometime to confirm Diagnosis but i feel so…..lost, frustrated, and even thinking this is just a bad dream and i will wake up an it will all be gone.
Now looking at one of the following treatments:
Lemtrada
Tysabri
and a newer treatment Ocrevus

All this is so frustrating for myself and off course when we get frustrated the first people to wear it are our loved ones and sometimes friends. I say it must be frustrating for my husband as there is not a lot he can do to help other than just be there as support. I do try and explain the symptoms so he can try and understand but it makes me feel like I’m complaining .

Gypsyrose

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edmontonalberta
6 months ago

@gypsyrose

If I may be so bold -take a deep breath – take a couple of breaths… Relax!

The worst thing for MS is stress – the best solution is diet. Focus on that…


grandma
6 months ago

The other half not really understanding is common, bring up stumbler excellent post on symptoms that all other half’s should try. You are not complaining, you are just misunderstood😍


stumbler
6 months ago

Hi @gypsyrose and welcome.

I can understand you being confused and frustrated. No-one finds this limbo-land phase easy.

Now, if the discussion has moved onto Disease Modifying Therapies (DMTs) of the nature of Lemtrada, Tysabri and Ocrevus, then a diagnosis of MS can be presumed.

MS itself is a degenerative, neurological condition. In the Relapsing/Remitting variant of MS (RRMS), there are periods of relapse activity, followed by a recovery, which may well not be 100%. This leaves residual damage which may be the symptoms that you are still having.

New symptoms, which last more than 24 hours, are usually indicative of relapse activity. This activity may, or may not, show up on an MRI scan, whether a contrast agent,or not, is used.

Specific symptom management is by medication, or the use of supplements. Magnesium may help with the spasms. Burning sensations are usually medicated with Gabapentin, Pregabelen, or similar drugs.

Dealing with this condition, and the symptoms, on a daily basis can be frustrating and depressing. Even more so when those closest to us cannot really comprehend what we’re going through.

Try not to be miserable in front of family and friends. Use this forum to get things off your chest. We understand why you would be doing it and, it avoids creating a bad atmosphere at home.

And finally, here’s a link to the post referenced above by @grandma. This might be useful when explaining your symptoms to others:-

https://shift.ms/forums/topic/describing-your-ms-symptoms


gypsyrose
6 months ago

Thank you it is good to get it out there, where others understand.

My husband has seen the worsed of the twitching/spasming. The burning sensation i explained its like hanging onto an ice block all day.


gypsyrose
6 months ago

Thanks for the list of symptoms i will keep it handy should i experience any of them.

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