neurological syndroms

[randalbond]

Hello all.
I have deteriorated and now have poor control of my body - it's hard to walk, feels that you don't have a full of your legs and try to walk when they're numb (but they're not), you drop items because your hands let you down. It's much more idfficult to speak for number of reasons and my speeh is very slurred and it's difficult to pornounce words, parestesia all over my body is constant as well as feeling of general malaise. Of course, it's difficult to find words and to spell. Also, my long term memory started to be affected, i.e. I started forgetting long-known details, names, etc.
I'm not complaining, just wonder if any members have the same symptoms and have you visited a neurologist? Any tests done, and treatment recommended to help with these symptoms, so that, at least they would not progress? It's very much like MS but in advanced stages. MS patients do receive some treatment, though. I'm from the UK, so don't even expect our neurologist to be of any help, plus I won't be able to attend an appointment. I'm not sure that MRA scan will be worth paying for because even if a few lesions are there, I won't receive any treatment.
Just want to hear other people experiences (not complaints). Any practical help is much appreciated.

 

[In Vitro Infidelium]

I have deteriorated and now have poor control of my body - it's hard to walk, feels that you don't have a full of your legs and try to walk when they're numb (but they're not), you drop items because your hands let you down. It's much more idfficult to speak for number of reasons and my speeh is very slurred and it's difficult to pornounce words, parestesia all over my body is constant as well as feeling of general malaise. Of course, it's difficult to find words and to spell. Also, my long term memory started to be affected, i.e. I started forgetting long-known details, names, etc.
I'm not complaining, just wonder if any members have the same symptoms and have you visited a neurologist? Any tests done, and treatment recommended to help with these symptoms, so that, at least they would not progress? It's very much like MS but in advanced stages. MS patients do receive some treatment, though. I'm from the UK, so don't even expect our neurologist to be of any help, plus I won't be able to attend an appointment. I'm not sure that MRA scan will be worth paying for because even if a few lesions are there, I won't receive any treatment.

Any major change in symptoms should be discussed with your GP, if you are too unwell to travel, ask for a home visit. You shouldn't worry at this stage, but just because you have a diagnsosis of CFS does not mean that you may not have some other (possibly treatable) condition which is responsible for your worsened state of health. It may be that your GP would decide to delay in making a Hospital referal, to first see whther the new symptoms persist - but you should start the process of involving your GP ASAP, and have a reasonable expectation of a hospital referal after few weeks of your GP monitoring the situation. Any major neurological evidence (from MRI or other test) that is suggestive of a known illness will be pursued by the Specialists, irrespective of your CFS diagnosis, which would in effect be put to one side if your CFS symptoms could be put down to the new diagnosis.

IVI

 

[randalbond]

Thank you. I have been like this for three months. Looks like you live in America. Here in the UK CFS patients don't even bother with doctors unless they can get private treatment. Thank you, anyway.

 

[Enid]

Yes all the same symptoms randalbond and equally suggest you take IVI advice. I did improve slowly from all that - it took time - and that was 10 years ago when little was known. (even my sincerely apologetic Neurologist and GP baffled but continuing to treat symptoms).

 

[randalbond]

Thank you, Enid. May I ask you how they treated your symptoms? I mean the ones similar to mine?

 

[In Vitro Infidelium]

Thank you. I have been like this for three months. Looks like you live in America. Here in the UK CFS patients don't even bother with doctors unless they can get private treatment. Thank you, anyway.

No my experience is entirely within the UK and I've only once had a disbelieving GP (that is out of a total of four practices 20 + doctors), and after a bit of discussion even he was persuaded of the reality of M.E and sent me off for a wide range of investigations. Will you get treatment for M.E - no there's nothing available, will you get tested to rule out anything that is treatable - yes.

IVI

 

[invisible ME]

Just wanted to echo IVI's advice, though I know it can be very difficult to get to doctor's appointments, etc when dealing with such poor health. Are there any family/friends that you could rally to help with this? It's fairly common to chalk all new and worsening symptoms up to ME, but there's always the possibility that you're developing something new (or that you're symptoms are progressing into a distinct neurological disease that will be easier to diagnose and treat).

Over the last year or so my family pushed me to make the rounds again with specialists (I probably wouldn't have on my own). While the neurologist simply ruled things out (again), I did wind up with a diagnosis from another specialist that I wasn't expecting, and would not have found if I hadn't persisted. It has led to some symptom relief through treatment. Another dear friend (also with ME/CFS diagnosis) went through something very similar to what you describe and wound up being diagnosed with CIDP (a chronic neurological condition similar to Guilliain-Barre, and more prevalent in males) though he was sure it would all come to nothing. He's now been offered some treatment options.

Best of luck to you. I know how tough this can be.

 

[Francelle]

Will you get treatment for M.E - no there's nothing available, will you get tested to rule out anything that is treatable - yes. IVI

Randalbond, I agree with IVI & Invisible ME, you need to present your current state of symptoms and health to your GP for his/her assessment as to whether there is enough evidence for further testing. I believe it is totally immoral for them to blockade ongoing evaluation of your health on the basis of a past M.E diagnosis!!!

I don't know about in the UK, but I know for me here in Australia for instance, I have been able to obtain treatment for all of my most distressing symptoms (one by one) which has made this overall condition more manageable to live with. One example (and I can cite three more) - longterm antibiotics made a huge impact to my quality of life. These antibiotics were prescribed by a Pulmonologist who I went to see for my dreadful, longterm cough due to Mycoplasma Pn. The antibiotics not only eliminated the cough but improved my energy and general well being and this has been maintained for two years.

Perversely perhaps, I have been lucky in that a couple of my severest symptoms have been very obvious and even testable, therefore provable. When this happens doctors can't refute actuality. Of course I too have invisible symptoms like extreme neuropathic pain but have been fortunate in that one of my doctor's has readily accepted this and appropriate treatment has been prescribed.

By managing the worst of the individual symptoms, life can be more tolerable even though it still presents its challenges.

I wish you well and pray that you get a very good hearing when you visit your doctor.

 

[WillowJ]

Hello all.
I have deteriorated and now have poor control of my body - it's hard to walk, feels that you don't have a full of your legs and try to walk when they're numb (but they're not), you drop items because your hands let you down. It's much more idfficult to speak for number of reasons and my speeh is very slurred and it's difficult to pornounce words, parestesia all over my body is constant as well as feeling of general malaise. Of course, it's difficult to find words and to spell. Also, my long term memory started to be affected, i.e. I started forgetting long-known details, names, etc.
I'm not complaining, just wonder if any members have the same symptoms and have you visited a neurologist? Any tests done, and treatment recommended to help with these symptoms, so that, at least they would not progress? It's very much like MS but in advanced stages. MS patients do receive some treatment, though. I'm from the UK, so don't even expect our neurologist to be of any help, plus I won't be able to attend an appointment. I'm not sure that MRA scan will be worth paying for because even if a few lesions are there, I won't receive any treatment.
Just want to hear other people experiences (not complaints). Any practical help is much appreciated.

have you had MS ruled out before? it sounds like it would be worth asking them to check again, for MS or any other alternate diagnosis. not that this can't happen in ME, but if it were something else instead (or along with but, they would tend to think it was instead in either case) you'd have treatment options.

be very sweet and persistent about getting checked for other diagnoses, and perhaps you'll make some headway.

is it possible you could get somewhere for a blood draw if you could get it ordered from an independent lab? there are places that do such things, but it would cost you some pounds

 

[Enid]

randalbond - you asked about treatments from my Docs here - this was - Hypothyroid found and treated, Gabapentin originally allowed low dose for pain I upped to full (epilepsy) dose which allowed deep sleep and pain relief, Domperidone (? spelling) for digestive/gut problems and Didronal for Osteoporosis found (reactive). My Neurologist following a range of investigations (inc "high spots" in the MRI brain scan) was unable to reach any conclusion. So all limited to understood conditions. I (when able) took off on a range of supplements based Hooper/Hyde/Nightingale literature. Can't say whether any particular one aided - but much info here in PR about helpful treatments. Suggest you follow IVI's advice and have all "checked" and as my Neurologist said 10 years ago "find someone who knows" - the likelihood is better now. And if possible please don't stress - I could not recall my own name in those days and mostly sleeping/bedbound barely moving with thinking capacity for the bathroom only. My best advice too is a concentration (in the light of current research/findings) on investigation of the gut from whence the rest follows - Kenny de Meileir & Co - if possible too.

 

[In Vitro Infidelium]

is it possible you could get somewhere for a blood draw if you could get it ordered from an independent lab? there are places that do such things, but it would cost you some pounds

Our National Health Service may be a bit creaky, and of course it is subject to all of the failings of human delivered services - but in general it is very good at doing the basics around known diseases with established treatments. The General Practioners (GPs) are very much gateway managers so a patient's relationship with their GP can be a 'choke point' but given the symptoms that are being described and they are of recent acute onset, most UK patients could reasonably expect to get specialist referal, with the GP ordering a range of basics blood tests straight away - there really should be no need for a UK resident to have to pay for blood testing to exclude the more common causes of the symtoms that have been described.

IVI

 

[*GG*]

Just want to mention that perhaps you should look into Low Dose Naltrexone, I believe you can get it in the UK, might not be easy though.

GG

 

[WillowJ]

Our National Health Service may be a bit creaky, and of course it is subject to all of the failings of human delivered services - but in general it is very good at doing the basics around known diseases with established treatments. The General Practioners (GPs) are very much gateway managers so a patient's relationship with their GP can be a 'choke point' but given the symptoms that are being described and they are of recent acute onset, most UK patients could reasonably expect to get specialist referal, with the GP ordering a range of basics blood tests straight away - there really should be no need for a UK resident to have to pay for blood testing to exclude the more common causes of the symtoms that have been described.

IVI

I understand... but I also know that if your GP is stubborn and you can't get another, you may have to start thinking about alternatives. This is not a UK issue; it is a fatigue patient issue. Doctors everywhere ignore and patronize patients with fatigue. It took me 3 years before anyone did anything other than order the normal labs they would order for a healthy patient with no complaints whatsoever (and they didn't even do that right away). That was before I learned I needed to be pushy sometimes. The issue becomes more complex if you have Medicaid or NHS and can't necessarily switch GP's... (in theory you have a choice of doctors with Medicaid, but doctors/clinics are forced to limit how many patients they can take, or else they would go broke, so you may not always be able to get another doctor)