More and more weird stuff....long post!

New diagnosis and before diagnosis
1

Hi everyone!

I have my first Neuro appointment next week to discuss an abnormal brain MRI, and am getting pretty nervous the nearer it gets. I have been unwell for over 20 years now and just need some answers and some help. Weird things seem to be kicking in on almost a daily basis at the moment, and I am getting quite concerned about what is happening to my body. However, I want to make the most of my Neuro appointment, and not just make him switch off and mark me down as a paranoid hypochondriac!

I wonder if any of you would be kind enough to plough through the (long and boring, sorry!) list below and let me know if there is anything you think the Neuro won’t be interested in. I have tried to condense it as much as possible, but, as you can see, have not been very successful!

Any comments, advice, reassurance would be so gratefully received as I am officially ‘freaking out’ at the moment!

Ok, here goes:

  • Constant imbalance/vertigo/instability……affecting walking and standing (and very strange sensations when laying down) on and off for 20+ years, worsened November 2012

  • Physical and mental fatigue, not relieved by rest or sleep. Erratic sleep pattern as above

  • Constant tingling everywhere from just below waist down, right arm and hand, right side (ribs). Several episodes of tingling down whole of right side of body from top of head to toes (lasting approx 30 mins) started approx 6 weeks ago

  • Difficulty walking as right leg feels strange, non-responsive, tingly, heavy, weak, as if going to give way (partially numb area on right leg). Very recently, similar in left leg and right arm started approx 6 weeks ago

  • Intermittent blurred vision in part of right eye, and pain around, and when moving, eye. Eyes drift out of focus – can see a part-shadow of image (13/08/2013 optician confirmed that these are not caused by my eyes) Keep seeing things moving to the side

  • Difficulty thinking straight, concentrating, speaking clearly, short term memory problems, word recall problems, losing track of conversations etc on and off for 20+ yrs, worsened Nov 2012

  • Intense stabbing pains in head, face, jaw, eyes and ears (almost always right side). Intermittent tingling and numbness in head/face (usually right side) and in lips and tongue, tender areas on head on and off past 2 yrs, lasting from 1 hr to over 1 week. Numbness/tingling worse and more frequent last 3 wks Throbbing headaches including neck and top of spine on and off since Nov 2012 (used to get phases of bad headaches, but not for past 5-6 yrs)

  • Pain, tingling, numbness, burning, ‘electric shock’ feeling in heels, usually when on feet for more than a few minutes, or when laying down or after wearing shoes mildly on and off for 20+yrs, worsened June 2012

  • Feeling as if being pricked with sharp pin, or prodded by someone started approx 4 weeks ago

  • ‘Fizzy’, jerky legs, mostly at night but sometimes when sitting still for a while. Also occasionally in back, stomach and right arm in legs on and off for several years, worsened Nov 2012

  • Involuntary visible twitching/jerking of right thumb on and off for approx 1 month about 4 months ago Same in left index finger on and off for approx 1 month about 3 months ago

  • Intermittent painful sharp tingling feeling on sole of right foot. Feeling like walking on broken glass constant for 3 days, approx 3 months ago, on and off since then

  • Muscle twitches/’vibrating’, ‘buzzing’, ‘rumbling’ feeling in various parts of body on and off for 20+ yrs, worsening November 2012 Feels at night as if bed vibrating last 10 days

  • Intermittent trembling feeling in whole body (not visible)/occasional visible shake in right hand started approx 4 months ago

  • Intermittent feeling as if liquid running out of corner of right eye down side of nose, but nothing there lasted few months approx 4-5 months ago. Same feeling on and off for many months down front of right shin about 20 years ago

  • Itchy feeling as if a hair tickling skin, or spider crawling on it. Burning itching since November 2012

  • Stiffness (especially in morning or after being in one position for a while) especially in fingers, feet, ankles, back, neck, knees on and off last 20+yrs, worsened June 2012

  • General aches and pains/shooting pains, particularly neck/shoulders, feet, fingers/hands, back, calves since June 2012. On and off for 20+ yrs.

  • Feeling hot most of the time, often sweating since June 2012

  • Tinnitus for 20+ yrs, worsened Nov 2012

If you are still with me, then thank you for reading! Any comments greatly appreciated

2

If this was going to be easy, you would have got to the bottom of things years ago… It would be nice if you had a short, time-bounded list of key symptoms, about 5 lines long. But you don’t, because that is just not the way it is for you. My advice? Just try to stay calm and focussed in the appointment and hope that you get a neurologist who is ready to listen. You probably will not get a miracle result in which all your questions are answered, but you might get a step closer to finding what ails, and that would be good progress. Good luck with your appointment. Alison

3

Hi Purpledot. Sorry to read of your poor health over the last 20 years. I think it’s about time you got to the bottom of it all. Anyway, I’ve always been partial to a challenge, so here goes. Firstly, the following is a list of symptoms that you can see for yourself on the NHS website, and they are all indicative of a positive diagnosis for MS. (Obviously, none of us with MS may have experienced them all before diagnosis) :- 1) Visual problems, 2) Abnormal sensations, 3) Muscle spasms/ spasticity, 4) Neuropathic/ Musculo Skeletal pain, 5) Mobility problems, 6) Extreme Fatigue, 7) Cognitive Dysfunction, 8) Depression/ Mood swings, 9) Bladder problems, 10) Constipation. Now, I’m pretty confident that presented with a clinically abnormal MRI scan, your Neurologist will already have a few ideas of what he thinks your problem could be. Personally, I would state that over the last 20 years, I have been experiencing a number of on-going symptoms that cause me to think that I may be suffering from Multiple Sclerosis and some of my symptoms have remained with me, during that time. Remember, that together with your MRI scan, your Neurologist will also perform a clinical examination of you. If he is not an MS Neurologist, he may well then refer you to one. I would take a written list with you (much like you’ve done here). That way you can refer to it , if he asks specifically about your symptoms. My fingers are crossed that you obtain a definitive diagnosis soon, whatever it is, but be prepared for a bit of a journey, before you reach the final post! Good luck. Tracyann x

4

Purpledot, I see from an earlier post that, when quizzed by your GP about what you were most worried about, you steadfastly refused to be drawn into self-dx. I think this remains absolutely the right approach. You are right to keep a completely open mind, I think. Alison

5

my symptoms are very simular, but for yours being prodominately on the right side mine are on the left side of my body. All I can say is be persistant with your Nuero, I am not diagnosed and he has said that I may never know what is happening to me, but he is still seeing me and helping me.

good luck

xx

6

Thank you so much everyone for taking the time to read my long post and for replying!

I am endeavouring to stay calm and treat this appt as a positive step towards some answers, and your replies have made me feel more positive that I should take this list with me and try and plough through as much of it as I can!

I hardly had any sleep last night as my tingling was so bad, and was accompanied by the feeling that the bed was vibrating undernearth me. Also, every time I moved my legs they ‘shook’ uncontrollably nand quite dramatically for a couple of second before settling down…seriously weird!

Medion - so sorry your Neuro thinks you may never get a definitive diagnosis, but at least he is persisting and hasn’t discharged you. I really hope you manage to get some answers.

Anyway, many thanks again for all your replies. I’ll let you know how I get on.