The medical professions lack of ME/CFS knowledge! - Your Answers Are Within
 
The Difficulties Involved With Dealing with the Medical Profession

and CFS / ME

Neurologist - A Total Waste of Time Read On

Some weeks back I was experiencing frequent dizzy spells and on some occasions blackouts. I went to my G.P. to report this deterioration in my condition and he suggested I go visit a Neurologist. Well the day arrived this week but what a waste of time it turned out to be, let me explain.
I arrived early having taken a taxi because I didn't feel up to driving, booked in at the reception desk and awaited my appointment. I was duely escorted to the neurologists door and I entered. I could tell almost immediately on entering that today I hadn't got an appointment with the Consultant Neurologist but one of his underlings. I have over the years, with various visits to hospitals both Private and NHS come across a number of underlings, some good and some poor, unfortunately on this day the underling in question was very poor.
A lot of research work is currently being done about our chronic illness and more is being discovered all the time but there is still a great deal of ignorance amongst certain members of the medical profession non more so than this particular neurologist and I use the word neurologist rather sarcastically. I found him rather insulting when he informed me that I shouln't sleep more than 7 hours a day because it's no good for me. Quite clearly he didn't understand that " chronic fatigue" means your'e tired a lot of the time, if it wasn't so sad you could laugh about it.
He even seemed incapable of checking my blood pressure correctly, fumbling about with the equipment and then informing me I had high blood pressure. I informed him that I had never previously suffered with high blood pressure and normally it's on the lower side of normal . So he tried again and if by some sort of miracle it was now just on the high side of normal.
I was then sent off to the ECG department to check my heartbeat, but on my way round to this department I started to feel unwell and on my arrival I was feeling dizzy and clamy. It was obvious to the nursing staff on duty I was feeling unwell so I was made to lie down to regain my composure before taking the ECG.
The technician on duty carrying out the ECG seemed knowlegable, he was aware of CFS/ME and some of it's associated symptoms. He asked me if I had had a tilt table test, " no I replied "and well that was the end of that, strange I thought, but one to look into in the future maybe.
I was sent back to the " neurologist " and told my results would be forwarded on to him. He told me that the ECG results where normal but then decided to send me for some blood tests and said the results would be sent to my G.P. in the near future. Also he said if my condition was to worsen then I should make a follow up appointment " no way I thought to myself "
So that's it, other than the ECG a total waste of time and precious energy, it goes to show what we are up against to try and get relevant treatment and diagnosis even in todays day and age. It's an uphill battle all the way, the problem being worse case sufferers of this chronic illness haven't got sufficient energy to fight any battles. Hopefully sites like this one will help spread the word and maybe just maybe things might begin to change.
 


Comments

08/16/2010 14:57

I just re-read you post. I was so exhausted last night I just couldn't get it to process but today, a red flag jumped out.

I think you may be experiencing what most people who have had CFIDS/ME for a while discover - OI - Orthostatic Intolerance.

It causes the very symptoms you described especially when we go from sitting to standing or laying to standing.

The test is very simple. It is a tilt-table test where they strap you in and then raise the table and wait to see if you pass out. If you have OI you WILL pass out.

Do you stand in line and wish you could just fall over? Do you find yourself moving your legs a lot when you have to stand for anytime?

If you do, I would ask to have this test done (by someone who knows something about this of course).

The 'cure' is to increase your salt intake, drink lots of water, and stand up slowly and go from lying to sitting/standing very slowly.

Dominique

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04/10/2012 04:36

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Julie Marinkovic
08/17/2010 05:08

Dominique,
Thanks very much for thinking of me and taking time to send the information. My husband and I are researching the subject of OI and look forward to finding out more. I do drink plenty of water, 2 to 3 litres a day, but I will definitely increase my salt intake (sea salt of course!).

I do have problems with standing still for a period of time: my legs itch and I have to move them, also my heart rate increases and I become hot.

Thanks again for the info. I have left a comment on your blog - good luck with the wedding.

Julie x

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Carlynn
11/30/2011 07:53

I understand how you feel. I've been dealing with CFS for 5 years and recently diagnosed with hypersomnia. It's been a double edged sword with my biggest motivator to get through med school and yet the biggest obstacle. I'm at the point where I have to take a leave of absence and hope for the best in finding ways to cope. Wish you both the best of luck. But yes, I agree with Dominique as that is what it sounds like. Talk to a doctor about several of these options: ProAmatine, a drug that raises blood pressure, Tyrosine, an amino acid, Beta blocker drugs are sometimes useful for increasing blood pressure, even though for most people they are used to lower blood pressure (and unfortunately the can make the individual more tired), Ritalin or Dexedrine can also raise blood pressure. Epogen/Procrit, an injection that stimulates the growth of red blood cells. Unfortunately, it is rare to find a doctor who knows anything, typically the best bet is finding a neurologist for energy and rheumotologist for pain management who are willing to work with you and understand it.

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01/09/2012 22:26

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04/10/2012 03:20

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04/16/2012 23:48

The fresh out of grad-school underlings are pretty clumsy due to nervousness and always fumbling with stuff. This happens due to lack of proper supervision on right time. On a small scale it may not be a trouble but in cases like neurological or cardiac troubles such things can be dangerous.

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04/20/2012 05:00

The medical profession is something that is very highly regarded and the one including most risk. So it is quiet natural for the new underlings to be nervous.

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