MS Limbo, Please Help

Hi Everyone

Im new here and was hoping to get some advice and support as ive been pretty stressed and frustrated recently.

I have been in Limbo land now for 5 months which probably doesn't sound that long compared to some people, but ive had an awful lot of frightening symptoms in this short space of time, its been absolutely traumatic! Sorry in advance for the long post, and thanks for reading!

Back in April I started to get a very stiff upper back pain and a stiff neck and I also noticed that my legs seemed quite stiff and heavy on awakening in the mornings. A few weeks passed and I started to get prickly, tingly sensations around my neck, chest and face. I also noticed that I was itching a lot on my upper half of body. My face came up with Hives along my jaw line and was really itchy, it would last a few hours then completely disappear. I was putting on some makeup one day and my cheeks started burning, almost like severe sunburn, this lasted a few minutes then stopped suddenly. Before I knew what was happening the burning started cropping up in all kinds of places, even around the outline of my lips which was really weird. The back of my neck, my nose and scalp itched constantly. Then one night I was watching TV and my whole body started to stiffen, I had chest pain, stiff back and neck and was burning from head to toe, I called an ambulance because I started to have a panic attack. Was taken to hospital, had all the usual workup, but everything came up normal, so they sent me home. They next day I felt fine, but again that evening it all started to happen again. I had another panic attack, and this time my left arm was really hurting and burning and then just went completely numb. The next day my arm was still sore and numb, and I was burning on and off all over. All of these symptoms kept accuring day after day, I went to the GP several times who really did not have a clue what was causing my symptoms, one doctor suggested I should be tested for lymes disease, which I did but it came back negative. After a couple of months and no answers from my GP, I went and saw a private GP, who run some basic blood tests, but didnt really examine me. When I went back for the results he basically couldnt find anything then stated I was suffering from anxiety, an prescribed some meds, then tried to sell me some cosmetic surgery (which made me feel really great..NOT) I started to take the medication and after a week I did start to see a slight decline in symptoms, so I was beginning to believe that maybe I really was just anxious. After a few weeks I started to feel really fatigued, and I noticed the burning and pain was starting up again. Though this time was worse than ever. More and more symptoms were starting to manifest at a very rapid rate, which made me rush to A&E twice, only to be sent home again, after more negative testing. Since this time I have been to see reumys, a neurologist and a orthopedic surgeon, been tested for Lupus, Lymes, and loads of other things, all negative. Ive had a Brain MRI and a Spinal MRI, both clear. I had a breast cancer screen, and a CT scan of my chest as I was told it could be a pancoast tumor. (lung cancer) Ive been told this is no way MS by all the specialists, however I have over 40 symptoms. List is as follows:-

Vertigo
Burning Skin (all over entire body, sometime all at once)
Tremors
Night Sweats
Rapid Heartbeat (this has never stopped throughout)
Mood Swings, Rages
Hives
Itching
Pain in arm, shoulder, upper back, ribs, underarm
Cold Wet Sensations
Pins and Needles, hands, arms, legs and feet
Pressure in my head
Band sensations around my head and stomach
Pain in my eyes along lower lid and corners
My Pupils are now dilating to different sizes
Heavy painful legs and knee pain
Bruising and swelling with the slightest knock
Sore throats
Flu symptoms
Reflux issues, feel like im choking
Tightening around my neck, like being strangled
Bones, joints clicking and popping
Electrical shock, lightening sensations down arms and legs
Sleep disturbances
Bowel problems (yellowish stools)
Anxiety (hardly surprising really)
Numbness in face, fingers, arm and toes and waist down
Weight loss 3 Stone
Knees shudder when walking down stairs
Out of body type feeling, like in a dream
Twitching hands, feet, eyelids and lips
Swollen eyelids
Face drop left side, though not permanent
Headaches
Fatigue

This is most of the symptoms ive had in the last 5 months, there are a few more to speak of. Ive been trying to get my neuro to let me have an LP but he doesnt seem to keen because my Spinal MRI was clear????? Im really having to fight to try and get this done. I keep being pushed from pillar to post, and am literally fulling apart mentally and physically. Everyone who sees me look shocked at my appearance, I really look like dealth on legs, and can barely stand for longer than 5 minutes. Although 5 months is nothing compared to some, I so frightened about the amount of symptoms in such a short space of time. The doctors just dont seem interested, I feel like I am reaching a dead end. I have 2 young children who are suffering terribly. Im also really concerned about my eyes and permanent damage, but the doctors just dont seem concerned. If anyone can offer me any advice I would be so grateful. Thanks again for reading.

Lyme disease can be very hard to detect dispite what your Dr. may say. I would read and/or post on the lyme board on healingwell... I'm kind of in limbo right now, my Nero Dr. says i MAY have MS but the LLMD Dr. said no way it is MS and he said he is sure it is Lyme.. I decided to treat for Lyme for now.

Ruth,

 my symptoms were very mild, just a little numbness in my right hand and right leg. My Family Dr. ordered a MRI which showed several lesions. He suspected MS right away and sent me to a nero/MS specialist. She did a ton of MS tests on me that all turned out normal, so she said the lesions "looked like MS lesions but since all the other tests were negitive this is considered possible MS" She tested for Lyme but it was negitive. That is when i started reading about the MS and Lyme disease, it is very controversal. I went to a LLMD and his test showed positive for Lyme disease. I dont completely trust him but i have decided to go with it to see how it goes.  It has been a little over a year since the first symptom, and been doing treatment for Lyme for 6 months. I have seen very little change, not for the better or for the worse. But again the symptoms are super mild. So really i dont know if i have MS, Lyme, or neither one. I wish i knew what was really going on but am thankful all i have is a little numbness, that is almost unnoticeable

Hi Ruth,

yes, i had a lumbar puncture (normal) and a eye envokment potential also normal... I am actually due to go back for a repeat MRI soon to see if any changes. I have since made big lifestyle and diet changes, and been on the the antibiotic and supplement protocol. I have lost some weight and am in much better shape.  even though i have almost no symptoms, i hate not knowing what is wrong with me, or what may be lurking inside of me.

Well i almost think an MS exxpert wrote your posting. Welcome to ms world: your symptoms are just about exactly like my first huge Ms attack only I had a lot more symptoms than this; i call it a "circus of symptoms". If you don't have MS then you have a very similar illness. I also went almost totally blind in my  left eye and big blind spot in right eye and other visual symptoms in my head that are impossible to describe. lost my memory and other horrible stuff. all kinds of weird fits and shocks of weird symptoms impossible to describe. meanwhile  some dumbass doctor was ignoring me and laughing at me. ran into emergency ward and was dismissed with a liar report by doctor who said I had a headache (i had gone blind in left eye suddenly). could not stand sunlight and found light blinded me. could look right at sun and not see it. was ignored and laughed at my a number of medical people. My MRI came out with no evidence of MS. that is becausde they did not do one of my spinal chord or use gladolineum enhancements. An employee at the hospital said they probably didn't even really give me an MRI but only faked it to get paid. Other such crap from other such "poor people's doctors" as I call them. Finally a famous eye neurologist correctly diagnosed me with optical neuritis but the other doctors ignored that and said he was wrong etc. spent 8 years in a limbo hell. symptoms changed and kaleidoscoped and all said it was because I was fat. yet people said it was because i am over weirhgt. society was merciless...........until i moved to Oregon where you can afford to live better and get a better doctor. Had to sleep outside in winter as i couldn't before now afford to live alone and others insist on having heaters on. avoid heat and avoid bad diet. look at my posting under the constipation thread on your page. ask me if you want advice. i am now 64 and have had ms all of my life but only diagnosed in 2001 after i went blind. i am a victim of doctors and society. i want to start a nonprofit for people like me who were not belived by doctors.

Littlehutton,

Do you live in an area where you are exposed to ticks? I live in the US  Northern Wisconsin, we have alot of ticks. I pick off at least 25 per year.

Good luck with your Dr. in London,  I would rather fight Lyme than MS, at least there is a chance to be cured.

Ruth,

Good luck to you and keep in touch, there is alot of lyme info. on the healingwell lyme board and even more on the LymeNet flash disscussions.. I hope you feel better and get get some answers.

1Hunter


How are you doing, how's the treatment going, have you had any further testing done?

Best wishes


Ruth

Hi 1hunter

So pleased to hear you have been feeling better, I to have heard that Celiac can cause MS type symptoms in rare cases, so perhaps that is the answer in your case, which is great news and easily treated. It's good that you are also getting another MRI just to make sure. Have you been prescribed any medication for Celiac or had to change you diet?

I am still in limbo right now, but I have got an appointment with an LLMD in 3 weeks, so I will keep you posted, I will also be asking for a repeat MRI soon in regards to the MS.

Wishing you well, and good luck at your next appointment, let me know how it goes.

Best wishes

Ruth

Hi Cathy


Hope you don't mind me asking, but why did it take so long to get diagnosed, and what symptoms did you have for all those years which eventually lead you to a diagnosis?

Best Wishes

Ruth