Hi

I would appreciate any potential explanation of my symptoms. I am not obsessed about getting a 'diagnosis', but would like a rationale to justify potential treatments. Brief history of my symptoms:

I've suffered from fatigue and brain fog for many years which was becoming increasingly worse. I could manage with caffeine and a lot of sleep, but could do little more than work. Developed rashes on my body 6 years ago that come and go. Diagnosed with sleep apnea (20 ahi), not treated due to being cpap intolerant. No depression, was very happy.

Then 3.5 years ago I developed heart palpitations and severe insomnia after quitting smoking and starting a low carb diet. 3 months after this I awoke one morning with mild ataxia, balance problems, non rotational vertigo and cognitive problems after a long haul flight. Occasional numbness and pins and needles in feet followed by numbness in face and lower legs one year later. Diagnosed with atypical Meniers disease and vit D deficiency (corrected). Since this time my balance and vertigo have improved dramatically, although my balance is still compromised. Numbness and pins and needles have been almost completely eliminated by regular weekly massages. Several MRI's during this period showed three white matter spots, several neurologists say not MS as spots in wrong place. Different Drs counted different number of white spots, the lowest been 2 the highest been 5+.

I began to do light exercise three times a week 2 years ago along with a low carb diet which improved things further. Five months later (ie 1.5 years ago) I developed muscle fatigue in every limb after a short haul flight and foot injury. This was off and on for several weeks. MRI just after this weakness started showed 4 or 5 white matter spots, which is higher than earlier MRI but radiologist said this was due to difference in technique and therefore no change in MRI. Report said symptoms are unlikely to be related to white spots. I also developed raised IGF1 levels for reasons unknown. Muscle fatigue slowly began to improve but has remained on and off in my arms ever since. Arm weakness seems to improve after eating.

2 weeks ago after a bout of food poisoning and a short haul flight, I developed co-ordination problems in my legs, along with stiffness and weakness. My arms became very slow. When I touched my face or picked up or put down an object my hands responded very slowly, as if they dd not know where the objects or surfaces where. These symptoms have improved dramatically since they began 2 weeks ago, but I am left with slow moving arms and occasionally some of the original symptoms. Legs still feel stiff after sitting down for even a few minutes.

Up until this latest symptom I was feeling quite optimistic. Now I am lost again. I am thinking MS, Peripheral Neuropathy, muscle disease or mini strokes. I thought perhaps it was a glucose issue (I have borderline high glucose and high insulin levels). But I do not see how such an issue could explain the latest symptoms. I am awaiting results of a GTT which I think will show reactive hypoglycemia (according to the nurse).

Any input appreciated. Please do not reply by saying 'see a doctor'. Obviously I am in the process of doing this, but I have seen more than 12 doctors over the past 3.5 years and have learnt not to expect very much from the 20 minute consultation.

Thanks

Hello Comeonthen and welcome to NeuroTalk.

Untreated sleep apnea can cause other health problems, some very serious. It is possible some, if not all, of your symptoms might decrease or completely resolve with the use of a CPAP.

Since you have seen several Neurologists what has been the consensus about your symptoms and MRI findings? Were there any abnormal findings on Neurological exam?

There are many conditions that can cause the same symptoms that are seen with Multiple Sclerosis, there is no symptom(s) unique to MS. With several Neurologist telling you it's not MS then more than likely, (hopefully) MS is not the cause of your symptoms.

Snoopy, thanks for your reply. Mild / Moderate Sleep Apnea does not cause weakness in the arms or coordination problems (at least there is no published research or case studies suggesting it does).

I did try to use a CPAP but it made the vertigo and balance worse, apparently this is known to happen with CPAP in some people . I have tried dental appliances and other methods all of which have failed. My sleep apnea is positional, so I can more or less resolve by not sleeping on my back.

Sleep apnea would also not explain the increased IGF1 (studies suggest apnea reduces IGF1). I also have a impaired mitochondrial function, although I am not sure how valid those tests are.

Hi Comeonthen,

I am not familiar with IGF1 or impaired mitochondrial function but I did do some searching and your impaired mitochondrial function does cause weakness/loss of coordination and neurological problems as well as other symptoms.

Information about mitochondrial function:
http://mitochondrialdiseases.org/mitochondrial-disease/

Have you asked your Dr. how best to deal with your Sleep Apnea? I am quite familiar with sleep apnea as I have lived with it for quite some years.

This does not resolve sleep apnea. I am able to sleep on my side or in a recliner without much difficulty. However, this does not improve the difficulties sleep apnea can cause (cognitive difficulties, fatigue, ect.). I do much better physically and mentally when using a CPAP.

Some do better when using a Bi-pap vs CPAP and might be an option for you.

Without treatment for sleep apnea your risk of a heart attack or stroke rise substantially and puts you at risk for other health problems.

Take care!

Hi Comeonthen,

I went through the entire gamut of uncertainty last year. My brain MRI actually reveals 20+ white spots. No other tests indicated MS, so my neuro is doing annual brain MRI's to compare for any further changes. Unfortunately, this year, my rheumy had me on gabapentin and it caused so much jerking that the MRI was just way too blurry to compare. So, we wait until next year. My neuro has got my migraines under control with topamax and cymbalta. My diagnosis was Fibromyalgia that was way out of control (we just can't seem to get it under control :-) ).

I have many symptoms including muscle weakness, fatigue, balance issues, coordination problems, memory problems, speech issues, comprehension and focus problems. Unfortunately, neurology is not an exact science and it can take years for a definitive diagnosis. I wish you the best of luck and hope that you find answers soon.