No break in symptoms

New diagnosis and before diagnosis
1

I have been reading your posts with interest and I am learning a lot. I am amazed and yet saddened by what you are all going through.

My question is - how come some of you have breaks in your symptoms? Since I had ano episode of confusion and dizziness back in January my symptoms have increased and I haven’t had a break from them. I have the tingling in my finger tips and toes all the time and this can spread to my fingers or my whole hand during the night and I have tingling on the soles of both feet. I am just about always dizzy and have intermittent neck pain and numbness creeping across my face. I don’t seem to get even a days break from these symptoms so I really don’t know what is going on with me or why the difference.

2

Hi Cassie,

Some people with RRMS get almost complete recovery after a relapse, although there is always some residual damage. It depends on the severity of the attack, the location of the lesion and the individual’s capacity to repair it.

I developed a lesion in my cervical spinal cord a year ago and have been left with widespread sensory symptoms including fatigue, reduced walking ability, dizziness, nausea, pain, numbness, that weird vibration thing etc My face is also affected. These symptoms fluctuate quite widely from day to day or week to week.

My neuro says I have demonstrated recovery because I am better than I was, but sometimes I think it’s actually because I have just got used to it. I asked him if he was sure it was RR and not progressive, and of course he wouldn’t give me a definitive answer but he said he didn’t think so.

It’s really distressing, I know, but January isn’t that long ago and you could still get significant improvement.

Do you have an MS dx? Or are you in limbo land?

3

Also, forgot to say, I got new symptoms every six weeks for a year, but my MRI in Dec (8 months after initial relapse) showed very little change and in fact the lesion in my neck had reduced slightly, so I really don’t understand it at all.

4

Teal, I am in limbo land atm x

5

Cassie, I’ve had symptoms the same as they are now for months. I was just diagnosed last month. The only time they reduced slightly was when I went on a spa break and relaxed like never before. Symptoms were still there but not as bad. Off balance is my main daily annoyance. Along with other symptoms

6

Are you waiting for an MRI? The thing is that there are so many neurological conditions, they have to be sure before they give you an MS dx, and even then they say some of my symptoms could be migraine related, or due to a head and neck injury I had years ago. You can be in limboland a long time, so the most useful thing you can do in my opinion is mindfulness. It trains you to allow sensations to come and go without causing as much distress as they otherwise would. Do hope you get answers soon.

7

Cassie

I think you have to be aware that there are many, many symptoms associated with MS. And an awful lot of those could also be caused by other diagnoses. Even some vitamin deficiencies can look like MS (D or B12 primarily).

Essentially, you need to be referred to a neurologist, have a neuro exam and whatever tests the neurologist thinks are necessary and only then will you (hopefully) know whether it’s MS or not.

Until you have had the tests and a diagnosis from a neurologist, it’s not a good idea to get it fixed in your head that it is MS. It might not be.

Many people do see a neurologist privately initially because it’s quicker than the NHS, but before you go down that route, you need to know how long the waiting list is for an NHS consultation (because if it’s relatively short you could end up getting diagnosed quicker). If it’s too long, then find a local MS specialist with both a private and an NHS practice. You’ll still need your GP to refer you, but it might be that if the neuro wants you to have an MRI and other expensive tests, they can slot you into their NHS practice. This way, hopefully you can only pay for an initial consultation.

It certainly is a worrying time to have unexplained symptoms for months. And for them not appearing to change or improve in that time. But, it’s a case of trying to put it from your mind as much as possible, keep yourself as fit as you can, given the symptoms you have, eat and sleep well.

And supposing it is MS, it is most likely to be relapsing remitting. Remission from a relapse can take months and months. You can find symptoms have remitted almost by accident, you wake up one day and find that you can feel some part of you that you couldn’t for a long time. And you maybe weren’t aware of when the feeling changed. And there are some symptoms that just don’t entirely remit. Sometimes you manage to compensate for the symptoms, and other times you can’t.

The best thing about RRMS these days is that there are many disease modifying drugs to ward off relapses. So you could find if you do have MS, things only get better from where you are now. And don’t forget, it might not be MS.

Sue