TMW

New diagnosis and before diagnosis
1

I find it amazing that i can look forward to a neurologist appointment so much ,but also dread it !

Im looking forward to it tmw because i feel so bad at the moment and im hoping he can help .Im dreading it because i know theres nothing he can actually do tmw and theres still a long road ahead .

Ive had one neuro app ,ms suspected based on symptoms, (but strangely not the side i have most of my problems )reflexes out on one side , history (eyesight went in one eye when i was 16 ,double vision alot as well,problems with urinary frequency etc for the last 9 years ,last year an unexplained limp for around 4 months?? .MRI has been done since last app ,no lesions found .Prolapsed disc in neck found (seen neurosurgeon not related to my symptoms)

I have got so much worse since i last saw the neurologist about 5 weeks ago .I had not been having leg and hand spasms,legs giving way and falling or numb face (throat,nose,up to ear ) severe fatigue now,cant remember anything and in the evening all over body burning .Im also very shaky now (my husband and me were having a giggle yesterday at me .Iwas having a hot choc with whipped cream on top and was getting it everywhere lol

The numbness is generally on my right side of my body ,even right side of my throat .Is that a normal occurance with ms orpossibly something else ?

Im wondering and hoping he will give me something to help me (not sure what though ) Im thinking he will send me for more tests .I know alot of people are in the same boat on here ,But the waiting for everything is getting me so depressed ,not just the waiting but having nothing to help with the symptoms .

Im not looking forward to my girls 6 week holiday ,not sure how im going to manage to be honest (god im having a right moan up today arent i )

Im still hoping its something else ,tbh i was hoping it was the disc in my neck causing everything so i could just get it fixed !

I think im just apprehensive about tmw and what im going to have done next .

Sam xx

2

Hi Sam x

I still haven’t been given anything to help me with my symptoms either! I keep asking and my GP keeps saying no - not until we have a better idea of what’s going on. First off it was because they didn’t want to ‘mask’ anything or because of my pituitary and uncontrolled glaucoma - but she’s asking the neuro for me now though x

Just hang in there xxx you’ll get there!! xxjenxx

3

Hi Sam

Thankyou for your comment on my post.

Good luck for your appointment tomorrow too.

Hopefully we can both get one step closer to knowing what is going on.

Know it will probably be that they they are still unsure and want to do more tests, but it is all a step closer.

Will be thinking of you

Teri x

4

Thanks Jen and Teri :slight_smile: Jen that’s what my gp says as well . Just hope if he wants to do more tests , it doesn’t take weeks Sam xx

5

Good luck Sam. Hope you get some answers.XXX

6

Hi again Sam

Just wanted to mention what DoctorGeoff wote on my post.

Ask for a copy of the letter that your neuro sends to your doctor. It is our right to be kept informed of what is going on.

Teri x

7

Will do Teri , thanks :slight_smile: Sam x