MS Limbo, Please Help

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littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 8/18/2010 9:13 AM (GMT -6)   
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.

animalnurse
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/26/2010 4:42 AM (GMT -6)   
Is there not a test they can run to tell you whether you have MS or not? I have gone through the same type of thing as you only mine has been over the last 5 years. None of my symptoms made sense to any of my doctors until my last visit which was last week. It was like a light bulb went off in my Dr's brain. Then she started asking me all these questions, I think it also helped that my Mother went with me. She has a lot of input as far as my symptoms go. I'm still not positive that I have MS, I'm supposed to go to the neurologist sometime soon and I was told by my Dr's nurse that the neurologist would have to test me for MS. That my regular doctor couldn't do it. I don't understand that but all my blood work and symptoms seem to point in the direction of MS. I know what you are going through believe me. If I were you, I'd take someone with you to an appointment, someone who knows what you have been going through and have seen the symptoms first hand. Maybe someone will finally listen to you. I hope and pray you get some sort of diagnosis soon, and can get some relief.

Tami
USA, Texas

1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 8/26/2010 5:43 AM (GMT -6)   
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.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 8/29/2010 3:10 PM (GMT -6)   
Thanks for your responses, im sorry to hear you are both going through this ordeal as well, limbo land is not a nice place to be.

Animalnurse - when is your appointment for the neurologist? This is a good place to start if you think you may have MS. I to have seen a neurologist, ive had 2 MRI's one of the spine and the other the brain. Spinal was Clear, but my brain showed some lesions, although im told they were not specific of MS, so hear I am still in limbo land. Have you been tested for lymes disease? I have had a negative blood test, however I have just found a clinic in the UK who do really thorough testing for lymes, not just the basic test, so this will be my next step. It great to be able to take your mother with you for some support, some Drs can be so dismissive of patients which I have experienced first hand, so make sure you feel comfortable with the neurologist as this is very important. Im sorry to hear it has taken 5 years to get to this point, im surprised it took your DR this long to refer you. I wish you luck on this journey, stay strong, and dont let the DRs give you the runaround. My thoughts are with you, keep me posted

Ruth
Essex Uk


1Hunter - Have you been tested for MS by your neuro, and if so what tests did you have? Have you had blood tests for Lymes? How long have you been in limbo land for? You say you are treating for lymes, how is this going, have you noticed any improvement? Sorry for all the questions, im just curious to know how these 2 different doctors have come up with 2 different diagnosis. Ive heard that MS treatments would make lymes even worse and visa versa so if you are treating lymes and the symptoms are improving then it must be lymes! I wish you luck and hope the treatment you are on is helping with your symptoms,

Take care

Ruth
Essex UK

1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 8/30/2010 5:40 AM (GMT -6)   
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

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 8/30/2010 3:02 PM (GMT -6)   
Hi Hunter1

Im surprised that your neuro didnt do more testing after a few months, such as a repeat MRI etc. Did you have a lumber puncture? Although its strange that you have had a positive lymes test, ive heard of false negatives with lymes but not false positives, I also know that lesions on the brain which suggest MS could also suggest Lymes, their appearance can be similar. I guess as you have minimal symptoms your probably best carrying on with the treatment you are already doing.

Take Care

Ruth

1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 8/30/2010 6:14 PM (GMT -6)   
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.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 8/31/2010 3:47 AM (GMT -6)   
HI 1Hunter

I know its horrible not knowing whats wrong, and your phrase "maybe lurking inside" really strikes a chord with me. I think the very same thing everyday. My symptoms are getting worse weekly so im really worried right now, this morning I woke up and my eyes were so sensitive and my vision blurred. I just dont know what to do anymore, ive decided not to go back to my neuro because he treats me with such contempt and my GP is just puzzled by my symptoms. Ive found a hospital in London which specialize in Lymes, so I think this is going to be my next move, they actually send your blood tests off to america and germany for the results, which is better than the standard basic blood test they do over here in the UK, so sounds quite promising.

ZencaliNidhi
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/31/2010 4:07 AM (GMT -6)   
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
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 8/31/2010 5:15 AM (GMT -6)   
Hi ZencaliNidhi

Thank you for you post. Im so sorry to hear of your suffering over the years, its such a shame we live in a society of dismissive doctors. Im rather concerned that you feel I definitely have MS, know one really knows what I have, and I have had 2 MRIs which do not suggest MS. Im starting to look down the lines of Lymes Disease, ive had a blood test before for this however it was negative. Have you ever been tested for LYMES? And was your MS ever confirmed by the doctors in Oregon in 2001? Im sorry you are still suffering, and I hope you find some form of relief some day.

1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 8/31/2010 5:25 AM (GMT -6)   
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.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 8/31/2010 6:07 AM (GMT -6)   
HI 1Hunter

No, I dont think there are a lot of ticks where I live, however I have 3 cats which have had ticks on them numerous times. Ive also traveled a lot over the years in the far east and been bitten loads of times by all sorts of insects (not sure if they were tics though) i've always been prone to getting bitten. I also spent many years camping in the more rural parts of the UK where there are definitely tics, but dont ever remember any bulls eye rash. Im also a keen horse rider, or was before I got sick, and horses to often have ticks. So i guess in view of my past its a strong possibility I may have been bitten at some stage. 25 per year is a lot of ticks, it sounds to me the likely hood of lymes is very strong in your case!

1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 8/31/2010 11:15 AM (GMT -6)   
Good luck with your Dr. in London,  I would rather fight Lyme than MS, at least there is a chance to be cured.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 8/31/2010 12:32 PM (GMT -6)   
Hi 1Hunter

I will keep you posted, im just waiting for some results from my Neuro, but once they are through, if I still have no answers I shall be going down the lymes route. I hope I have neither disease, but I to would rather have lymes, some people with MS however have very few symptoms which are manageable, where I have had about 52 symptoms in 5 months, this is seriously no joke! So for me if it is MS, it would seem to be a progressive form, which long term is not good at all, Like you said with lymes, I would feel that I had half a chance of recovery. Im so scared right now, and sick and tired of being sick and tired. Im so pleased that you dont have anything to severe at the moment symptom wise, and I hope you one day find the definite cause, and can move on with you life.

Take care

Ruth

1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 8/31/2010 5:58 PM (GMT -6)   
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.

niecer1
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/2/2010 12:05 AM (GMT -6)   
Hi,
I don't know where you live, but you need to see an MS specalist. I was diagnosed 12-4-97 after 6 years of Dr's telling me you have nothing wrong with you, it's in your head. I went through surgery and found myself even more bouncing off walls, vision doubled, slurred words. Heck my family wanted to have an intervention because they thought I was a drunk. I went to 3 optomologists and then a neroulogist, only to tell me I had a stroke during my surgery, a month before. Long story short I have had many of the symptoms you are having, they took a MRI and the lesions were present.  I had been having an "Attack" for at least year or so.  You need to get a second opinion. Blood work is not all, but if you have had the on goings of an attack, sorry can't spell exasterbation, you need to get it checked out.  Many of my friends don't understand this but you do, the syptoms suck and cause havoc with your life.  The longer you wait the more progressive the disease gets.  It attacks the whole essance (sorry spelled wrong but no spell check) of your life physically and mentally. YOU my friend can do something about that, do not let the people in your life detere that from you. MRI's they say " oh we can only say MS if you have had 2 attacks" Well we know that something is wrong with us and we want answers.  There is no cure, sorry to say, but meds to help you live a normal and happy life. You do have a reason to be conserned. It might not be MS or something else, but you have the right to know!
 
I wish you all the best and hope to hear how it all worked out.  IF you need someone to talk to and yes I will be giving this up for the world, but I don't care my e-mail is:
niecer1@netzero.com.  I wish you the best of luck, and I pray for you.
Sincerely,
Denise L.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/15/2010 9:28 AM (GMT -6)   
1Hunter


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

Best wishes


Ruth

1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 9/15/2010 8:12 PM (GMT -6)   
Hi Ruth,
 
How are you doing?
 
I have continued the Lyme treatment but still unsure if i have it or not, since i really dont have symptoms anymore i am thinking of stoping. The Lyme Dr. wants me to continue but i have been on antbotics for close to 9 months,  BUT..... my family Dr. ran a Celiac test on me "just to check"  and the nurse called me today and told me the result was a strong positive and he wants to see me tomorrow to discuss. I will likely need more testing to confirm, but is seems that Celiac, in rare cases can act like MS. So Mabe that is what is wrong with me. I would rather have Celiac than MS. I'll let you know what the Dr. says. I'm also going to ask the Dr. to do another MRI.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/16/2010 6:26 AM (GMT -6)   
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

1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 9/16/2010 7:05 AM (GMT -6)   
Hi Ruth,
 
I have not begun to treat the Celiac yet.. I have Dr. appointment today with my general Dr. to discuss the next step.  he will probably order  biop. of the small intestins to confirm the blood test. His nurse told me on the phone that the blood test is 99% accurate though.
 
Hope you will find out more from your LLMD..  Keep in touch!!
 
Jeff

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/20/2010 1:41 AM (GMT -6)   
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
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