Hi

An update on my original post (original copied below). Any help appreciated.

The stiffness and weakness have somewhat resolved, although the 'co-ordination' issues that started a few weeks ago remain. It's like all of my limbs are working in slow motion, as if they are stuck in glue. It's probably not observable from an external perspective, although it's definitely real (not a perception) and feels significant. Some days are worse than others. On a really good day it's hardly perceptible. High dose caffeine relieves the symptoms. Oddly enough my vertigo and weakness has reduced.

I've had a recent follow up MRI which has only confused matters further. The report from the radiologist states that 'there continues to be aproximatley eight non-specific WMHI of doubtful clinical relevance'. However the previous report said 4 or 5. My doctors interpretation of this is there 'has been no change'. How can moving from '4 to 5' to '8' white spots (100% increase) be no change? In addition there is now a reference to a 'right sided intra-meatal vascular loop of doubtful clinical significance'. This isn't even mentioned in the summary which suggests everything is fine. My spinal MRI now references ' minimal disc osteophyte bars of doubtful clinical significance' which were not there a year ago.

All very confusing. If I didn't have symptoms I wouldn't care less about the MRI reports, but I do have symptoms.

I am considering stem cell treatment, but don't even know what to treat at this point.


08-10-2015 09:28 PM
Comeonthen
Unclear Diagnosis
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