In Nov. 2010 I had this extremely bad headache behind my left eye. Felt like something was pulling from behind my left eye to the back of my head. Tylenol 3 did nothing for it, the pain kept me awake at night. It lasted for about 10 days. Felt really tired too but probably because I was not sleeping. Went to a Neurologist and had an MRI and Evoked Potential test and everything came back negative. Good news right. In the spring of 2011 I had an episode of extreme fatigue, left side weakness, really bad tingling and numbness and I felt I was not walking properely. Lasted anywhere from 2-3 weeks and then everything went back to normal and life was good again. It seems that every fall and spring I have these episodes and they always go away. Also I do experience the tingling and tiredness at different times throughout the year and it comes and goes and I'm not sure what brings it on. I did not pursue it with my doctor since my MRI was negative and besides my symptoms always goes away until now. This time the symptoms won't go away and I'm scared and have nowhere to turn. Its been 5 weeks and I am still very fatigued, tingling/numbess, stiff legs, not able to walk properly (legs won't go as fast as I want them to) :-( I have been referred to a neurologist which I have been told may take months. In the meantime I have to suck it up and contintue with life as best as I can. I am not sure what to do? Any suggestions? Please help me I'm loosing faith. :-(

carocris,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on her condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi Darlene, thank you for your warm welcoming reply. :-) and sorry that I ranted in my first post. This is the longest that I have had symptoms especially the leg weakness and stiffness.
I'm just hoping that I get some answers soon cause I feel like giving up and staying in bed.
Thank you.......

Very nice to meet you and NO giving up !

I have small fiber neuropathy.....diabetes and then 6 rounds of chemo did a number on my nerves.

I am so sorry you had to come here but glad you found us....this is such a wonderful and caring group of people. I've only been dealing with this for a year now and I'm on my 3rd round of meds to see what might help. It's a long process for me so I just have to set my mind on getting this done and moving on to the next thing but still hoping the next thing is the one that gives me some of my life back

What meds are you on now ? Did they refer you to the same neuro you saw in 2010 ? I can't be of much help but others behind me can probably give you some good info. My symptoms are 24/7.....on and off all day long....burning, numbness, stinging, tingling...etc.....started in feet then hands....now in upper right arm and in both legs and arms at times. Very frustrating to deal with but we have to keep going

Please give any additional info that you think might be helpful for others reading your post.

Take care and keep us posted....WE care !

Debi from Georgia

Hi Debi, sounds like you are a very strong person. Thank you for your positive words and encouragement. I really appreciate it.

I am booked for a brain MRI in two weeks and supposed to see the same neurologist that I saw in 2010. I hope she listens and will help me figure this out. It's been six week (longest time with lasting symptoms) Feeling so fatigued, weakness, tingling, numbness and my legs won't go as fast as I want them to so walking like a turtle at the moment and just waiting to snap out of it like all the other times. So'ooo frustrating. I'm not sure why it won't go away and is lasting so long. No treatment yet because not sure what my problem is. I'm hoping it's a pinched nerve or something that is fixable. Just trying to keep living normal and tryiing to keep a positive attitude but it is very hard some days because I feel everyone is staring at me when I'm walking and that upbeat energetic person is gone. Grrrrr

Shoot....I walk like a 99 year old woman My grandkids just laugh at me when I shuffle along like Ozzie Osborne ! I just have to laugh at myself sometimes. And I'm just a silly old 51, almost 52 year old woman that wants her old life back Just like everyone else here.

I hope that you're right and it's something they can fix....what a wonderful outcome that would be ! We're here for you whatever happens.

I can't sleep because I'm hurting...fingers and toes are the worst but I hurt all over....changing meds has really sent my pain right up the chart ! I've just got to keep going and give it a chance to work but I'm thinking it going to be a no go this time around. I'll see my neuro at the end of next week....I'll have been on new med for 3 weeks at that time and we'll discuss what's next.

Take care and please keep us posted.

Thanks for the compliments......really made me feel good when I was pretty down.

Debi from Georgia

Brain MRI without contrast results.......would anyone have any idea what this means.......
MRI IMPRESSION: Predominantly parietal cerebral volume loss unusual for this patients age. Clinical correlation is recommended.

my best suggestion is take things one day at a time

I think perhaps you should look into Ion Channelopathies such as Periodic Paralysis.. hypo hyper and normo kalemic periodic paralysis and Andersen Tawil Syndrome. These are considered rare disorders but I believe they are rarely diagnosed. They are considered rare forms of Muscular Dystrophy. It took me three months of research on the net to come up with my diagnosis of Andersen Tawil Syndrome. I presented my case to my physician based on my research.. a review of my family history and genealogical tree and my connections to known Founders for rare genetic disorders among the very early settlers of New France.. Canada. Stiffness is also part of my clinical picture (myotonia) and by treating my electrolyte disturbances and avoiding fluctuations in my potassium level through diet and supplementation my condition is greatly improved.. Malignant hyperthermia cardiac conditions and paradoxical reactions to medications like sulfa certain antibiotics and anesthesia. Important note is that stiffness for many may be an indicator of Hyperkalemic periodic paralysis in which case too much potassium could be the reason you are suffering from the stiffness.. I was pretty sure my symptoms were the result of a normokalemic nature as my diet was typically low in potassium high in carbs and sodium.. so I experimented with the recommended diet for hypokalemia and in three days my stiffness disappeared flexibility returned and pain virtually disappeared. Since my diagnosis didn't happen until I reached the age of 53 much damage has occurred to my muscles and I now suffer from permanent muscle weakness.

Welcome kattsqueen.