No longer in limbo no MS

New diagnosis and before diagnosis
1

Hi everyone

finally after being in limbo for almost 3 years after having a possible MS diagnosis, I have had my results. I had a second MRI at the beginning of the year which came back with no significant changes and not much more detail than that.

When I had my neuro appointment I was told that it could be from an isolated incident that has left me with some lingering symptoms. He also believes that stress is the main cause. I was then told that he doesn’t think I have MS but would see me again if there were any further symptoms.

When I received the letter it stated that I don’t have active MS and I wondered why it just didn’t say I don’t have MS. I have now also been referred to a rheumatologist as I have quite severe raynauds with up to 20 attacks a day, which can be confusing with the numbness and tingling.

I hope to get some answers soon but would love to be able to put MS out of my mind.

2

Hi Leyla, I can identify with you due to being in limbo myself.

Way back when I was 45, (63 now) I started feeling lethargic. I was used to running at full pelt… had a full time job, plus ran slimming clubs, had a family, a pet, a home to take care of, and a hubby who all needed my strength and stamina.

The stamina was the first thing to go. The I began tripping up over fresh air!

I saw a neuro…he suspected PPMS…my mobility worsened very quickly. I had all the tests, some more than once, but there was no evidence to prove MS…just this weakening body, getting worse by the week.

I pushed for a diagnosis and was told it was 90% probable PPMS.

I had to retire from work, on ill heath at 47. I re-arranged my life, cursed and swore at my failing body, but did as much as I could for myself.

8 years later, my diagnosis was changed to HSP…hereditary spastic paraplegia!

My word turned upside down and inside out yet again.

HSP is a lot rarer to MS, but very similar in presentation.

So, what are your symptoms?

Talk to me some more if you need hun.

luv Pollx

3

Hi Poll

thanks for your kind reply, I’ve never heard of HSP but hope you are able to get some treatment for it.

My problems probably started 3 or more years ago. Like you I used to be very active, I was a keen runner and had served in the army for 12 years. After leaving to have my family I still kept active, walking a lot, gardening, decorating and generally never stopping. I recently turned 50 but I feel I have less energy than my mother so I don’t feel I can use age as an excuse

I think it began with some really bad headaches and dizzy spells which would last a week or so then disappear. some time later I had a numb feeling in my toes as if I had plasters on them. I completely lost the feeling in one finger for a while which was the oddest feeling and completely different to the raynauds. I also seemed to have trouble gripping with that hand and used to play drums and would keep dropping the drum stick. I also get a lot of spasms in the same place which keep coming back and feel like something is painfully being stretched.

All through this time I was extremely tired, but didn’t usually have problems sleeping but still woke up tired. I also stopped going out as much because I was worried I’d be too tired to get home again or couldn’t hold a conversation because of fatigue. I seem to have more of a grip on fatigue by pacing myself and not overdoing things.

These odd things keep coming back but one constant thing is the dizziness especially when I’m walking it feels almost like I’m drunk, but not in a nice way.

When I had my first MRI they found 3 lesions specific to MS in the same area All the other tests came back negative. The second MRI came back with no changes so I’m no further forward. I don’t want to have MS but just want to feel better more like my old self again. I had been under a lot of stress the last few years so I think a lot could be because of that but I think you know yourself when something isn’t quite right.

Leyla x