Early MS symptoms??

[nikko222]

don't know result of tests yet..MRI evoked pot. balance test tomorrow and then doc will order spinal tap later this month. Still freaking going b/t thoughts that it is lyme (negative x2 by quest). Have been on Lyme site online talking to people. Many people online said they were misdiagnosed with MS and found out had lyme. Just spoke with someone he was dx thru Igenex,positive for lyme,elsewhere negative and saw a well known LLMD for years,took all the anitbiotics only to do worse. He was then definitly dx with MS, feels badly about wasting so many yrs, is in a wheelchair and can barely talk. Said he had alot my sx, esp twithces. I feel like ripping my hair out.  The confusion is enough to make anyone sick!
June 05: fatigue, muscle twithces all over, numbness tingling of side of face, night sweats, lymph nodes tender, severe left sided headache,left neck pain, fainting spells (didn't faint),  head waves, balance problems, cognitive problems, flu like..never any high temp, sometimes lowgrade 99.4), some blurry vision on a day or two, stuffy sinuses (neg for infection). Out of work form end Jly to nov 05. MRI w/o contrast neg, all labs negative.
Then o.k, not great Nov-June '06. exercising.still muscle twitches and some fatigue but able to function. Then end of June Boom again:Increased twithces, night sweats, slightly swollen glands, fatigue, back pain, legs weak: dx toxo. Felt o.k sept. than 10/12 Boom: balance probs still have, twitches, thigh muscles weak, no loss strength,little fatigue. Any symtoms that might differentiate B/T lyme vs. MS?? Lyme can cause lesions too.

[cool1971]

please i need help if this sounds familiar to anybody i'd like some advice.
  I used to be a healthy, strong and very energetic mother of two little kids. In the spring of 2007 something changed.

I started to feel extremely cold mainly in my upper body needing out door cloths inside the house and during the night often, felt very tired all day long, felt like I was fainting, but never did, at times felt my legs were so weak that I felt would fall down but never happened, wanted to go to bed during the day often, had funny sensations and pain in my knees that got inflamed under sun hit when in the beach, or walking with a child on my arms, had pain on my lower legs when exercising at the gym -a kind of pain that felt to me like bone pain- to the point that I had to stop exercising altogether as the pain persisted for two days after the exercise, had flu like symptoms non stop -although I did have often minor chest infections, the symptoms persisted in between infections, making me feel I never stopped being ill and blaming the symptoms to the chest infections-  

During the winter after this awful spring - summer all these symptoms remained except for the knees and legs as I did not do a lot of running that seemed to be the wrong exercise for me. The chest infections continued and got really bad, (I have asthma, and this is the main explanation for them as your lungs become more prone to develop them; but nevertheless I had altogether 50 days of antibiotic as never seemed to get over the chest infections and every time I got worst and worst needing intravenous cortisone and antibiotic followed by a long course of 26 days of antibiotic in tablets to finally get over them.

During all this time (we are now in spring 2008, a year after my first symptoms started) I continued to have most of the symptoms mentioned at the top of this document, but I ended up being confused and blamed them all to my chest infections i have had for almost a year.

In this spring 2008 I saw an respiratory specialist that suggested i had a chest CT scan to make sure my lungs were not damaged and i had a CT scan done that was clear and that was good news.
I
still felt so drained and tired although under antibiotics for so long I had become stronger in a way.
Neither of the doctors I saw for my chest infections recognized any of the persistent symptoms I mentioned to them as having any thing to do with specifically with any of the chest infections found and treated.
I tried to take rest whenever I needed and tried to believe i simply had to recover from a bad year.

I got stronger and happier, specially since I managed to go throughout the summer 08 with out catching any chest infection, although I had sore throats often-

But the bad news is that in the middle of the summer with lots of sun and hit I still got extremely cold at times and had to use winter outdoors cloths inside the beach house and for sleeping being unable to warm up for 5 hours to weak up in the morning all hot -finally. The tiredness and fatigue, weaken legs, flu like symptoms, wanting to go to bed during the day, lying down often covered in lots of blankets, etc was still part of my regular 'new life' although it did not happen every day.
It become more obvious to me -now that I did not have the chest infections any more that this symtoms I had for so long blamed to the chest infections had nothing to do with them and that what ever I have is like a latent thing that switchs on and off for periods of days.
I never know when it will start or go, but when is on it stays for days or weeks and i know i am more likely to switch it on if i am weak.

Now autumn 08, the cold sensations have become more acute, like strong shivering feelings inside my spinal cord going from bottom to top of the back of my head, shoulders and upper chest are also affected, and the sudden sensation of lethargy, fatigue and tiredness, combined with flu like symptoms in my head too take over me and all I can think of is to lie in bed with plenty of blankets. it is then as well when I tend to feel as if I am passing out.. a very weird sensation, I feel that if I fall asleep I will never wake up again. My legs are like jelly, I feel my joins, not specially painful I simply notice them. This is a typical crisis that lasts for a few hours after what I remained simply very cold and generally tired, but more awake without so much lethargy though but then for days or weeks I will be having this ‘crisis’ combined with times and days of being better but not normal.
I also have experiment difficulty with comprehension of texts, mental numerical calculation throughout this time.

During the breaks when the major symptoms go away (something that happens randomly and what it seems to me totally by chance) I am a very happy mother and wife, want to do things, and don’t need to have naps, early nights, or wear ski cloths in the house.
I wish it always was like that. i'd love to have another baby, but it'd only be possible if I could get rid of what invades my health most of my days.

Regular test for hypotalamus -gland that regulates body temperature have been done to me several times with negative results.
Most of the general health parameters measured (immune system, glucose, cholesterol…etc) seem to be just perfect.

It has only become clear to me in the last month or two that there is some connection with my spinal cord as I realized when lying on my back -putting pressure on my spinal cord therefore- I start having the inside shivering sensations in the cord and soon after feeling very, very cold, like it did switch on part of the process explained.

During all my chest infections I did have all this symptoms as I have mentioned and for sure felt they got worst when I was weak with fever, congestion, etc, specially when not having antibiotics.
I always felt better during an antibiotic course and I was on my best during my last 26 days course of antibiotic -when towards the end I felt so good- in great part because I was having a bad chest infection and it was being killed, but funny enough the rest of my other symptoms all improved dramatically-

[cat457]

Is LYME Disease something that cannot be detected from a blood test?  I had strange MS like sx before but went through all the neuro test (negative) and MRI (negative).

[mineandours]

HI. Lyme has my vote also.  I ran from doctor to doctor for two years and I'm the one that finally put the pieces together when someone posted a link to LymeNet.org.  I was once a "possible MS" diagnosis, too.  My neuro-Lyme diagnosis was missed by 14 different doctors because my Lyme titers were negative.  That's why so many of us are falling through the cracks.  Doctors don't know this and/or refuse to believe it. I've been on antibiotics for 2 years and 9 months and am about 98% better.

The balance issues you describe could be caused by a co-infection called Babesiosis.  You really need to find a good Lyme specialist.  Visit the LymeNet.org site and post there.  Someone will help you to find one.

Good luck....Carol

[lat67]

Hi Nikko,

Quite honestly you sound much more like Lyme disease then MS. From what you have said you have already looked into Lyme.  Testing for Lyme is very inaccurate and infact is about 90% false negatives.  I have had every test possible for MS including lumbar puncture.  Three neuroligists have told me I do not have MS.  I finally found a doctor that sent my blood work to California to a lab that specializes in lyme testing. I was dx with lyme and am in treatment....i know I am getting better.  I wish I had not wasted so much time thinking I had MS.

My main symptoms are:  crushing fatigue (i used to run half marathons) muscle twitching, pin ***** sensation, muscle jerking and severe leg weakness( no strenght loss just very heavy and weak)

If all your tests come back negative then I would strngly recommend getting tested for lyme at a proper lab.

Good Luck...here is my email...fell free to email me with any questions.
***@****

Lesley

[lisadav]

I was misdiagnosed with MS six years ago. I have CIDP w/GBS. I have found a web site that answered all my questions. www.gbsfi.com. The pain, numbness, trouble walking.Everything i was reading fit my problems. i was surprised, i had no idea. I am not saying this is you, but please don't freak out with a diagnoses until you have had all your tests. and you continue to search for info as well. my prayers are with you.