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

Hello Comeonthen,

This is a link to your other Thread which may be helpful for others:
http://neurotalk.psychcentral.com/thread224380.html

Disc Osteophyte is also known as Bone Spurs which may or may not cause symptoms. The link below explains what Bone Spurs are, the symptoms and treatment.

Bone spurs are not related to Multiple Sclerosis. You may want to post on the spinal disorders and back pain forum on this topic.

Spinal Disorders and Back Pain:
http://neurotalk.psychcentral.com/forum22.html

Information about Bone Spurs:
https://www.cedars-sinai.edu/Patient...teophytes.aspx

Lesions listed as non-specific can be due to any number of causes and is not specific for Multiple Sclerosis. Has the MRI report or your Neurologist said the lesions are due to Demyelination? Multiple Sclerosis is a demyelinating disease and usually a MRI report will indicate lesions as such.

There is a diagnostic criteria for MS (The McDonald Criteria). The links below explain the other conditions that can cause the same symptoms of MS and that need to be ruled out as well as testing used in diagnosing MS.

Other conditions to be ruled out:
http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

Diagnosing Multiple Sclerosis:
http://www.nationalmssociety.org/Sym.../Diagnosing-MS

Thanks for your reply, Snoopy. I will check out the spinal disorders page, although oddly the one thing I do not suffer from is back pain.

In relation to the lesions, the report conclusion states: "There are some minor hemispheric white matter T2 hyper-intensities which are not particularly excessive for age, likely on a small vessel basis and of doubtful clinical significance. There is no other intracranial MR abnormality of note"

However I do not think such a conclusion is warranted. I have seen no research that suggests someone in their mid 40's would be expected to have 8 lesions. More importantly, the number of lesions increases each time a new symptom arrives and has recently increased by almost 100% (unless this is an error or simply due to subjective variance between radiographers).

I seem to fit the diagnostic criteria for MS that you pasted and the other published criteria perfectly (symptoms plus lesions separated in time and space documented to occur at the onset of new symptoms ).

I can only assume my Dr does not see my symptoms as being MS symptoms. I do not get numbness or pins and needles, but I believe that is because I have several massages a week. If I stop these massages then they come back in a week. I do have hyper sensitivity in all my extremities. I've wondered if I have peripheral neuropathy, but I was told its not possible because I do not have diabetes. A comment you can refute with 10 minutes googling.




[QUOTE=Snoopy;1166621]Hello Comeonthen,


Disc Osteophyte is also known as Bone Spurs which may or may not cause symptoms. The link below explains what Bone Spurs are, the symptoms and treatment.

Bone spurs are not related to Multiple Sclerosis. You may want to post on the spinal disorders and back pain forum on this topic.

Spinal Disorders and Back Pain:


Information about Bone Spurs:


Lesions listed as non-specific can be due to any number of causes and is not specific for Multiple Sclerosis. Has the MRI report or your Neurologist said the lesions are due to Demyelination? Multiple Sclerosis is a demyelinating disease and usually a MRI report will indicate lesions as such.

There is a diagnostic criteria for MS (The McDonald Criteria). The links below explain the other conditions that can cause the same symptoms of MS and that need to be ruled out as well as testing used in diagnosing MS.

Other conditions to be ruled out:


Diagnosing Multiple Sclerosis:

Hi Comeonthen,

As you already know you can have peripheral neuropathy and not have Diabetes. If a Dr. told you that I would certainly be looking for a new Dr.

Information about the causes of peripheral neuropathy: http://www.ninds.nih.gov/disorders/p...neuropathy.htm

There are other conditions that can cause lesions as well as the symptoms you are having. It's important, for the diagnostic process, to rule out other causes. Your diagnosis of impaired mitochondrial function is one of those other conditions. But, you could have impaired mitochondrial function and something else.

Was this the "impression" section? There is not any mention of demyelination which is what would indicate MS as a possibility.

In the case of Multiple Sclerosis: A new symptom does not necessarily mean the MRI will show new lesions. It is possible to have new symptoms or even an exacerbation (relapse, attack, flare-up) and not have new lesions.

You really need to get some clarification from your Neurologist about what is causing the lesions and your symptoms, if you haven't done so already.

As above, he says there no evidence of a disease process. The white spots are due to age (I am also an ex smoker).

Hi Comeonthen,

The written word loses it's ability to come across the same as when people speak face to face so I do want to say that what I am writing is meant sincerely.

If your Dr. has already said your MRI does not indicate a disease process then why come to a MS forum? If you are in doubt about what your Dr. has told you, you do have the right to get a second or even third opinion.

Age can cause brain lesions but I don't know what age is considered "age related." I have read that smoking or being exposed to smoke can cause brain lesions but I don't know what percentage or how common it is. I was raised around smokers and I have never seriously considered smoking as a cause for developing MS (I just don't think it had any bearing in my case).

I came to an MS forum because I disgree with my doctors opinion and wanted advice from other people familiar with the condition. I've had an opinion from several doctors, all with different views. I am getting tired of multiple opinions and I'm not inclined to seek out another. Sometimes it's better to just have it out with one doctor than keep changing every time there's a disagreement.

I am in my 40s and disagree that eight lessions are normal for this age group. I am not aware of any published research to support such a view.

Comeonthen,

In regards to the amount of lesions for someone in their 40's...I am currently 49. In 2007, I was 41 and my MRI revealed 2 lesions. In 2014, I was 48 and my MRI revealed 20+ lesions. I am an ex-smoker. I presented and still have symptoms that are found MS. My Neuro ran the complete gamut of tests including the LP. Everything was negative for MS. My PCP then decided I had Fibro. My Neuro even sent me to the MS specialist in Jacksonville, FL for a second opinion. My Neuro continues to follow me every 6 months (he treats my migraines) and does an annual MRI to compare to the previous MRI's. This year's MRI was unusable since my Rheumy had me on gabapentin and it caused me to jerk and there was too much motion on the MRI.

There are many reasons you could have lesions on your brain. My 23 yr old daughter has 3. Migraines can cause them, ischemic episodes, etc. I would suggest to you that you not focus so much on the lesions, but to focus on the symptoms and work with your doctors to find answers from there. I am currently in physical therapy for muscle imflammation and strengthening and my diagnosis is ONLY Fibromyalgia.

Thanks, bddouglas. I asked the Neuro / Radiographer to review all of the MRI's. They are insisting that the changes are only due to differences in technique / interpretation and there is no real increase in the foci white spots between scans. Perhaps more importantly, they reiterate there is no apparent disease process and they do not believe the white spots are clinically relevant. So I feel a bit more comfortable. Interestingly I have had significant success improving some of the symptoms with low level laser of the spine and muscle release. This is based on the basis there may be some trapped nerves in the spine causing symptoms.

After reading several of your posts, I have a few questions and a few opinions.

My first question is, do you know what your BMI is? If you don't know, you can Google it. The reason I ask is because if we ignore your apparently benign brain lesion load, so many of your symptoms could be caused by or a result of being a bit overweight.

Fact: Brain Lesions do not automatically mean MS. Even 8 or 10 of them. Your reports seem to indicate yours are normal for your age and should not be of major concern.

Fact: I, myself have lesions in the brain, "... too numerous to count." I have no problems with anything above my neck. No headaches, dizziness, no TMJ, no Optic Neuritis, and no hearing, swallowing or breathing problems.

Yet my diagnosed version of MS, 20+ years worth, is not related to even one of my brain lesions.
The fact is, I have several sizeable lesions spanning between two or more vertabrae in my C-Spine and my
T-Spine. And no, the spinal lesions do not cause pain. What they do cause in me is quadriplegia. Very few things in my body below my neck work. Not my arms, hands, legs, feet, bladder or bowel. (Heart and lungs are good, for now)

This is just my thoughts, but the symptoms you talk about could be because of being somewhat over -weight for your age and height. Problems with sleeping, (sleep apnea?), Neuropathy pain or numbness, particularly in your feet, ankles or legs, or headaches. General fatigue does not automatically indicate MS.

I sympathise with you for not feeling right, but you seem so focused on your issue being MS, which your own doctor and MRI's don't seem to support, that could it be you have shut out the possibilty of other causes for your symptoms?

Perhaps your GP could help out. He or she could have a CBC done on you as well as a fasting cholesterol test along with a general physical and any other tests he feels necessary to check you out completely and maybe rule out (or in) any other health risk.

We understand you want answers, but sometimes answers can take months or years. We will help you make that journey, if you want some friends.
Karen S