Do I have MS or ME or is it just me.......

I am still awaiting my formal Diagnosis which I should get in the middle of September, I have been suffering with since 2010 I suffered for a while and went to the drs and was diagnosed with Depression and medicated, I returned a few weeks later as I found a lump that turned out to be a golf ball size inter muscular Uterine tumour and that was causing anemia , after chemical menopause to shrink my tumour to do keyhole surgery they forgot to take it out and I had a hormonal flair which caused me to have a abdominal Hysterectomy at 38.

So what does this all have to do with Ms … After years of complaining of little recovery from my symptoms that should have gone after my surgery I was sent to a Neurologist, I walked in thinking he was going to tell me it was damage caused by my surgery, He done a full Neurological examination and asked a million questions and then hit me with it … You may have MS my symptoms listed below:

Memory problems & Brain Fog

Ringing in the ears and (Over sensitivity to sound at times)

Frequent Headaches

Tiredness & Fatague , Sleep problems

Constipation & Bloating, Abdominal Discomfort

Sexual dysfunction & Vaginal Atrophy

Loss of sensation in several areas

Heart beat awareness , Depression, nervousness

Burning Hot feet mainly at night but not always.

My blood work is all clear no Anti Bodies, traces of viruses, deficiencies, I am current waiting on my EP results which I know had issues as they re done it as I felt it on both sides of my body when one side was stimulated, also when the Neurologist tested my reflexes whilst I was laying down with my eyes shut my opposite leg also responded to it. I have had a full brain and spinal cord Contrast MRI.

since finding this out I have done a little research as you do, and came across a book which written by someone who suffers from MS and it could have been me writing it, it is the first time I have felt that I am not crazy and that is why I decided to join.

My phone is my lifeline, it reminds me of everything, without it I could not function, I don’t know why I am telling you all this, I think it is more that I have told anyone, I am just hoping that someone out there can appreciate where I am coming from.

Blessings you all

The first problem I really noticed was going blind in one eye - impossible to ignore. Acute Optic Neuritis (AON) that was DX by ophthalmologists. Getting on for two years later I wondered if I was hypothyroid - my GP took my symptoms seriously enough to test me for it. I then had sensory abnormalities too and my GP referred me to a neurologist who DX MS and confirmed it be MRI. The AON could have been regarded as a first attack though the neuro said he thought I had MS from before that. When I’ve described the fatigue people have thought “chronic fatigue syndrome” which I suppose is often a synonym for ME. Well I have CFS but it it is caused by MS (as certainly as theses things ever are).

So, I guess you have to wait for the neuro’s verdict based on his expertise and tests. To me it sounds like MS. Especially with abnormal EP and reflexes.

Since the early nineties I became reliant on PDAs then PDA like phones (actually I did have a small filofax before the PDAs). It wasn’t unusual behaviour and I know other people who could do to some organisational/memory aid but MSers are more likely to have those traits.

I hope you get answers soon and best wishes.

Bless you …Thank you so much, it sounds like you have been taking this road for a long time, That must have been quiet a trauma especially then as the internet was almost empty then and it was hard to find out information, I hope you are not having to much of a hard time.

I must admit I did freak a little when I heard, and I got angry although I am not quiet sure if it was at the medical profession or myself, for just giving up and retreating from life, but I didnt have the energy to do anything else.

I have since looked at it differently, I now look at it like a life reboot. I spend three years fighting recovery from my surgery trying to get back to how I used to be. Now I know, I need to find out who I am now,Because I am far from that person, I already know my boundaries, what knackers me out and have things in place for many of my symptoms.

I got sent to the Neuro because I still have numbness six inches above my surgery site 3 years after and my GP thought it was nerve damage.

The neurologist was surprised when he asked if I had any other symptoms, I spun off a whole list that I had been collecting over the weeks as they came to mind. you know how it is you find a coping strategy for things as they come up and then it becomes habit so you almost forget that it is a problem because it is just how it is and when your feeling brain drained you just chill and when your having sleep problems you do something or take something.

The good thing is that I have them all on record dating back years and if I am formally diagnosed then I have had it a for quiet a while, so it seems quiet stable, but I am also very aware it can change at the drop of a hat, but knowing that actually makes it easier, the memory problem actually also helps with that at the moment, I cant stress about what I don’t remember.

So I am just living day to day and hoping for a diagnosis one way or another.

Best wishes