Health Organization for Pudendal Education

Haha why thank you!

Migraines are very odd aren't they, I actually had another one last night after not getting one for over 3 weeks. Mine seem to come in clusters but no known trigger as of yet. I forgot to mention when my vision problems began last year I was also told that my optic discs were pale. I was told they are not related to the problems of grainy vision but I'm getting worried something seriously neurological is going on with my body. It could of course be migraine related but the constant migraines did not happen at the same time, thats only been happening within the last few months.

I decided to go for a walk today as it was sunny and I really needed to get out the house. I got so far (not very far at all) and my legs began to feel heavy then the crawling tingling sensation worsened and the tops of my legs felt like bone on bone was rubbing together really painful. I decided to prevail I'm in my 20s surely I can walk a bit further... well it really hurt and I had to sit on a bench in the baking hot sun for a while. I consequently got sunburnt and my brother had to come and escort me home! The numbness came back as well as the tingles. After about 6 hours it seems to have calmed down. I have not had any pain since I got home it's so weird. Could it have been the heat or the walking or both? Gusselsprouts did warn for me not to overheat... is this sort of exacerbation in symptoms something yo experience too?

I;ve decided to pay to get all my medical notes. Going to go through it with a fine tooth comb I feel medical professionals have overlooked the amount of different symptoms I keep getting on a regular basis. I fear they wont take me seriously due to my clean MRI but surely something neurological is going on here..

Hi Miffy,

First if all, you are certainly not a hypochondriac!

I am glad that you are getting all your medical records. i think you should go through everything and make a list of your symptoms and when they occurred. The more you tell me about what you have been experiencing, I must say, the more it makes me think that you may have MS. I really have no right to be diagnosing you but as I do have MS and have experienced so many of the same symptoms that you have, it makes me very suspicious. This is not meant to frighten you and I could very well be wrong, but you certainly are not imagining these things and a good neurologist will take what you tell him or her seriously despite the clear MRI. As I mentioned before, some people with MS do not have lesions that show up on an MRI. Usually the MRI is done with and without contrast. The technician should wait at least 10 minutes before rescanning you after administering the IV contrast. Again, MS is a clinical diagnosis. That means the diagnosis is made on the signs and symptoms that the patients exhibits. In fact, prior to MRI, the used to sometime diagnose MS with the "hot bath test". They would put the patient in a hot bath, and if that made the patient weak then that helped to diagnose MS. So, remember no hot baths and no hot tubs. A hot bath could make you so weak that you couldn't get out of the tub by yourself. in fact don't even take a really hot shower.

Before I was diagnosed I would take walks and sometimes my legs would become very heavy and weak and I would wonder if I would be able to make it back home. This would be most likely to happen when it was hot or humid. So take your walks when it is cool--in the early morning or in the late afternoon or evening. If you do get over-heated for some reason, take a cool shower and drink something cold.

The tightness you mentioned around your chest in a previous post sounds like what is called the "MS hug". So be sure you tell your neurologist about that as well.

Do you find that you get fatigued more easily than would be expected from someone your age?

When is your appointment?

Miffy, if this does turn out to be MS, I guess the good thing is there are lots of new therapies for treatment that can keep the disease from progressing for a very long time. And there are many treatments that are being researched that will be available in the nest several years. I am on Tysabri and I feel like my symptoms are under good control. If I didn't have this problem with PNE I feel I would be living a pretty decent life. I think i developed my problem with PNE from obsessively using a rowing machine for 3 years prior to my diagnosis with MS.

Good luck! You will come out of this flare.

Take care and do keep us posted on how you are doing.

Will be thinking of you,

Lois

Hi Miffy,

It sounds like a real mystery what's going on with you. I don't know if this info would be helpful but here is a website that lists some possible causes of polyneuropathy. http://tinyurl.com/6445z4w I wish you luck in getting this figured out.