What do you take for EDS? I have EDS symptoms but they only started 4 years ago at 29 and I was never flexible...so could not be EDS is my understanding.
Hello.
I am so sorry you are going through this. It sounds remarkable similar to my own situation. Tell me, do you have joint pain as well? Are you more flexible than others? If so, check out Ehlers-Danlos Syndrome. I was first diagnosed with Fibromyalgia but recently got an EDS diagnosis. For this I went to a geneticist. EDS is a genetic, hereditary disorder of the collagen in your body. Not enough is produced so the joints, muscles and nerves suffer. I have been on Cymbalta and Gabapentin for years but recently decided to change my diet and try adding supplements and other "healthier" items to my life.
I wish you the best of luck!
OK Flowerpowerdk.
You could do your own self-screening and or challenges, since your doctor
is not very supportive.
Candida you may do your own screen: Saliva test for Candida (online search and very easy to do-repeat a few times)
If positive you can follow a strict anti-candida regimen.
Look that up or let me know and I can give you details.
Vitamin D3, definitely low. Try 5000 IU (sublingual drops) daily!
Also you may consider a trial of SAMe OR Methylocobalamin and
5-methyltetrahydrofolate. (your "normal" B12 is for cyanocobalamin levels
and not methylocobalamin-neurological B12 type)
For the time being you may forgo the suggested MS treatment, as this might be not warranted.
I'm surprised he's suggesting this, despite the lack of classic clinical MS symptoms and the absence of MRI and LP findings.
Please consider the above and don't feel helpless.
There's a lot you can do and should you need any help or have any questions, I'm just a click away.
Keep me posted.
Cheers,
Niko
Hi Niko . Thanks for your reply.
Here in Sweden we don't have direct acces to our medical journal, and you have to go through alot of beucratic stuff to get the information. The bloodtests that they took only indicated low D-vitamin (around 20) which I am taking now - 500 mg/800 IE once a day - I've been taking them for about three months not but I don't feel the big difference . My headache is still there my forehead, nose and sole of right foot is still numb, all though I don't have the pins and needles anymore neither the weakness in my arm , I sometime feel dizzy with the headache.
I've been tested for B12, but as I said we are just told whether its normal or not - we don't get to know the exact number. The other things that you are mentioning I don't have a clue what that is about !! Once I talked with my GP about the candida tests, and you know what he just started laughing and said that there is no way that a candida problem is causing my symptoms! So today he prescribed some anxiety pills for me that I have to take for about 14 days, if that doesn't help he is going to treat me for Multiple Sclerosis! He is not a MS specialist nor a neurologist , just a regular GP - Should I just accept this diagnose , even my Lumbar Puncture and MRI a completely clear? And my neurologist has written in the rapport that I dont show the "typical" symptoms of MS!
I feel very confused about my situation because I feel like the doctors authorities are using their power without thinking about my needs our my wish. This is driving me insane and I feel LOST :(
Hi Faiza.
You have gone through the medical circuit, but beware that the more complex your health condition is, the less effective the conventional medical system can help you.
Don't see their inability to help you as personal defect, weakness or whatever may go through your mind, which might be bringing you down, more than symptoms of your condition are.
Having said all this, you may have to make a "plunge" into uncharted territory.
Things to explore, do or rule out.
1. Cholesterol levels. Low levels may cause neurological and/or endocrine
dysfunction, as these systems are very cholesterol dependent.
This does not show at all on the tests you had.
2. Neurological forms of B12 and Folate (methylocobalamin & methylfolate) can only be tested by having a CSF Homocysteine test.
The standard MMA tests only indicate the levels of regular forms of these.
Also B12 Lab ranges in N.America are substantially lower than European and Japanese Labs. There are many neurological issues associated with the lower N. American "normal" values of B12 cobalamin.
3. Low Vitamin D levels play a big role in the neurological system and overall health.
Do you perhaps know your vitamin D levels?
4. Have you ruled out Candida?
5. Hypothyroid? Free T3, Free T4 and Reverse T3 thyroid tests?
6. Have you had any genetic testing?
My first suspicion would be MTHFR mutations.
7. Have you had your Histamine levels checked?
8. Heavy metals?
7. Have you done any detoxification?
8. Glutathione levels? There's a gene called the JNK gene (elevated glutathione levels keep this gene dormant) and when it is activated it signals disease processes to start developing.
There are 3 subtypes. JNK1 and JNK 2 are found mainly in the tissues and JNK3 is found mainly in the brain.
When glutathione is low, due to a number of factors, (stress and certain deficiencies for example) JNK activation is likely,
leading to the onset of serious and chronic diseases.
I can go on forever, but the aforementioned are some of the more fundamental ones, which are missed or ignored by most doctors.
Should you have any questions, please post again or pm me.
Best wishes.
Niko