Aa
Aa
A
A
A
Close
674737 tn?1226539884

Desperate for answers please answer

Hi I have been sick for 21/2 years and have seen 7 neurologists and no one can tell me what is wrong. A year before i got sick I had never had a headache or any health problems. A year before I got sick i began to get severe pressure headaches and the pressure even went into my ears. Had Mri(normal) saw Ent said even though mri and ct was normal that to open my sinus cavites may help. He found an air level pressure in my sphenoid sinus. After surgery the pressure was the same and he said it was not a sinus problem, I even get a popping noise and sometimes a buzzing sound in my ear. Anyways I would have pain in my knees that would come and go and then after working in my yard my hands both swelled (all tests normal except serum iron went really high and then back to normal a few days later. The following days I was so ill lost 17 pounds in 2 weeks. All muscles became really stiff and sore, shortness of breath, twitching in thumb, This illness has now continued, I have muscle loss in face(my smile is even shrunk) muscle loss in hands they are cupped looking with fingers slightly bending in, muscle loss in feet, legs, arms. Bladder issues bowel issues. All tests Mri,emg,ncv,lumbar,evoked potential normal. I used to be very intelligent and now I feel like I have the intelligence of a child. I studder sometimes. I have had personality changes ie swearing or making racist comments when I never have done this in my life. my memory is so bad I can't even function. I am 32 years old and I don't know what to do because no doctor knows what is wrong and all tests have been normal except my reflexes are brisk. Please help what could this be. Also my skin is very thin and shiny now especially on hands and feet and my fingers are tapered. How can I be this bad and my tests be normal?
19 Responses
Sort by: Helpful Oldest Newest
674737 tn?1226539884
Yes I have. I don't know if I mentioned but celiac runs in my family. I did the home test you can buy it here in Canada, the celiac chapter endorses it.
Helpful - 0
Avatar universal
u been tested for coeliac/b12
Helpful - 0
Avatar universal
Dear Mya,
I am so sorry you are having such a rough time , your post brought me to tears and I wanted to give you a hug ! Yes its very sad that you are so unsupported but still I would think that your son would prefer to be with you even if you just hang out watching cartoons and quiet play. Kids are so resilient and you mustnt beat yourself up there will be days when you feel a little stronger and can do a bit more with him.
Does your husband feel overwhelmed and not know what to do and say do you think? Men can be a bit hopeless when it comes to this kind of thing, you must feel quite angry with him , I am guessing and could be quite wrong.
Do you have  play groups  in your area for mums and toddlers ? just a thought , illness can make you feel quite isolated and down cant it , I go to an art group once a week and really unwind , i forget all my problems for three hours I think it is very good to get out and mix if you can.
You sound really down today but it is good that you are preparing by looking on the web site you mentioned , word of mouth is the best recommendation .
It must be difficult to have to pay for health care especially when you are not benefitting from it , I really hope you get someone who will get to the bottom of these awful symptoms and give you some relief and quality of life back. You are too young to be in this situation.
There seem to be many people on this site who have this same problem with their healthcare provider , not being believed and being made out to be nutty.
What do you mean about your face changing and looking different , do you think you are having some muscle loss there?
I have that same feeling But for me I know that its pain and medication that make me look tired and washed out . I do try to make an effort and put make up on when \i am not at home but its very upsetting all the same . Do keep in touch and really try to be optimistic that you will get a good neuro who WILL help .
kind regards Fay
Helpful - 0
674737 tn?1226539884
I have seen some of the best neuro's according to the physicians who have sent me. There is a website called rate your MD which has patient ratings so I will pick one from there and start from there. Managing a one year old it's really tough and that is an understatement. My husband works 11 hour days and satudays to support the family and it it really hard for me I have no family or friends where I live and it's very very tough. I keep telling my husband our son should go to daycare(the last thing I would ever want is to send him to daycare) but the situation is not good. Most days I am hardly able to get off the couch so my son and I hang out and watch cartoon, play but as he gets older he needs to get out more and I am not feeling good enough to be out and about. My husband just ignores me when I tell him this because he would not be able to work the hours he does and it would be hard for us to get by with him working less. All in all it is a really, sad, tough situation. My mom died from cancer two years ago so I don't have her and my husbands mom is very ill with Lupus (my poor son has bad genes). I feel like crying today. I talked to my husband on the phone over the lunch hour and he kept telling me how my face looks a little different but not that different. And I said why would my sister who hadn't seen me for a year say my face looked different and he says she doesn't know anything. Even people have have met lately and I show them a picture say how different I look. This kind of talk really doesn't help me at the doctors. Life.....it's tougher than I ever imagined it could be. Sigh.................
Helpful - 0
Avatar universal
Dear Mya
Unbelievable yes but not suprising , they are trying to put the ball in your court by saying that it is lack of use , I have had similar things said to me in the past so you are not alone. How on earth do you manage your one year old ? it is exhausting when you are fit . I wonder if there is anyone else who could go if your husband is intimidated , I think neurologists are particularly an arrogant lot so depend on people being intimidated , he or she is just a man and after all you are the customer and he the public servant !!!! I had no time for them either they had messed me around for so long . I now have a lovely one who is seemingly doing his best for me but I have been through lots before each one changing the diagnosis and treatment , some insinuating that I was a nut or hypochomdriac. It is heartbreaking when one feels so terribly ill and desperate.
I have four boys ,now older, so they have been good , they do seem to understand cos they see me at my worse . I am divorced now partly because of being ill , I couldnt cope with the guilt and also had no help from him mentally or physically . We are now good friends and meet up for a lunch out now and again.  I have had to cut my work to TWO! hours a week because I get so exhausted but want to keep working for the company incase I ever feel well enough to work again. They are very good to let me not many places would.
You mentioned that the pysio had noticed your wasting and poor tone well actally she would be more in a position as that is her field so the neuro is wrong there.
Could you try to get a recomendation from someone in your area on who is a good  ( and sympathetic ) neuro by asking on med help . I got mine through recommendation and also was told who not to see. Not from medhelp in my case but it may be a possibility for you . There are some really good people on this site arnt there ?
I am really keeping my fingers crossed for you and hoping you get sorted and some answers very soon in the meantime keep your chin up
regards Fay
Helpful - 0
674737 tn?1226539884
Hi fay, I am well today, I got a good sleep and it's still early in the day, by the end I am pooped. Thanks for caring. Yes normally I would fight and resist them telling me it's all in my head but i just cry and then it makes me look even more like a nut job. I get so angry with my husband because he is shy and intimidated by Dr's so he sits there and says nothing. Part of the problem is he is in denial so he won't even admit the obvious changes in me. I am going to look into this chiari and syringomyelia. We have talked about going to the mayo but would be a huge cost coming from Canada. I will go to the doctor soon I am waiting a little longer because I'm trying to ad to my life insurance. Also I figure if I wait till it's so bloody obvious then they can's say I'm nuts. What I don't get is I had a physiotherapist look at me 1 1/2 ago and said my muscle tone was abnormal and she could see my hands were unevenly wasted and fingers were crooked yet the neurologists I see can't see it. I asked a neurologist why would a physiotherapist see this and you can't. His answer well they are not trained as a neurologist. They actually even blamed my muscle loss in hands and arms on lack of use when i am a mother of a 1 year old. Of course I can't use them like I used to they get so tired. But who has ever heard of a 32 year old losing muscle from lack of use. I just want to scream. I really have a hate on for doctors, we can't believe how dumb the ones we have seen are and they are supposed to be the best, scary thought. Take care, Mya
Helpful - 0
Avatar universal
Hi there , how are you doing today?
I read the last post and also thought it could be chairi and syringomyelia anyway it is a possibility and worth looking at. The tests for this would be an MRI of the upper spine . It is difficult to diagnose so often goes untreated.
You mentioned fibromyalgia which translated means ligament, tendon and muscle pain ! Drs here in the UK also use this diagnosis when they really cant think of any thing else.  
Your symptoms do sound of a neurological nature especially the muscle wasting . Try typing syringomyelia and chiari  into a search engine to see if you think the symptoms are like yours.
Please dont put off going to the Dr , do you have anyone that could go with you for moral support and to help you fight your corner . When you are as unwell as you are you may not have the strength to insist that you are not passed off as having pschological problems.
The medical proffesion seem to be able to get away with murder dont they ! I do hope you get some answers soon ,dont give up .
Helpful - 0
674737 tn?1226539884
No what would be the tests for this? Thanks for your reply
Helpful - 0
Avatar universal
Have you ever been checked for Chiari Malformation with possible EDS ?
Helpful - 0
Avatar universal
Dear Mama,
If your thyroid was tested more than a year ago, you should have it tested again.  An endocrinologist is a doctor who is expert in the hormone glands, which include the pituitary gland, the thyroid gland, the parathyroid gland, the adrenal glands, and the ovaries.  A thyroid panel is a special test, not a routine blood test, so if they have drawn blood recently, normally they don't look at that.  By the way, the pituitary gland is in the middle of the brain, and it sends signals to the thyroid, and rarely it can get a growth and make the thyroid act up, but once again, a comprehensive thyroid panel will also show that.  You said you'd have it checked soon, but I don't see why you won't go ahead and do it right away, as it does not cost too terribly much, altho it is more than the usual bloodwork.

In my last post, I forgot to mention, if the re-check of your thyroid comes clear, a couple other things they should look at in your regular bloodwork is your blood sugars and your omega 3 and omega 6 enzymes.  I decided to write you again because my thyroid goofed up one time, and I know how bad it feels to be unable to concentrate, to physically slow down to a snail's pace, and to be very concerned about what is happening to yourself.  It is a miserable existence and I feel so sorry for you.  Hope this helps.  I'll leave you alone now, but do tell us again about the thyroid and if you'll visit the endocrinologist.  Three different people have told you now to see that kind of doc.
GG
Helpful - 0
674737 tn?1226539884
Thanks fay, I am a fighter and I will get to the bottom of this. We were just watching tonight this show called mystery diagnosis on TLC and of course these sick people were all told all in your head, go see a psychiatrist, just like me. I hate this about the medical profession. I also had lost my parents that were 52 and 55 the year I got sick and as well I had told the doctors my mom and sister have bipolar even though I never had any psychological problems except for slight anxiety and so for sure they have labeled me. At this point it is dangerous for them not to listen to me as I am so ill. It has been 6 months since I have seen a doc but will go soon. My husband would like some answers and I would like to get the medical supports I need in place. I can't even get cpp(disability in canada) I have paid into it but without a diagnosis even though i am unable to work...too bad. My husband supports the family but he works all of the time and it is tough because my son is one and my memory is so bad it is at the point I can't remember things or lets say I had a bath I can't remember if it was today or yesterday. I forget to eat and then it is especially bad because i have to focus so hard to care for my son, I forget about myself. I will hang in there I won't let these uneducated doctors get the best of me. I think they are so used to what they learn in there textbooks that anything that doesn't fit in the box.....then it must be all in your head. Also they throw around the fibromyalgia diagnosis....I realize it is a real illness but they also misdiagnose people with it. I personally know three people who where told fibro and then turns out one had Lupus, one Lyme disease and one connective tissue disease. I am so disappointed with the medical system and the lack of care. Not to say all docs are like this but most of them I have come into contact with this is how it's been. Also are hormones and the endocrine system the same thing. I have been tested for hormones through a lab in the usa and I have had my thyroid tested so many times and it is all normal. What would an endocronologist test for? Thanks for caring.
Helpful - 0
Avatar universal
Dont give up trying to find out what is causing your health problems!  Drs always use the pschological card when they havnt the skill to find the answer . You are obvioulsy unwell , this is not simply depression . It does sound like it is an autoimune or systemic illness because of the wide ranging symptoms and the suggestions to check out your hormones and endocrine system would seem like the next step.
have you been looked for MS or Scleroderma as well as the neuropathies.
I know it must be awful for you and understand why you must dread going to the DRS to be passed off as having psychological problems when you feel so ill and scared.
Helpful - 0
Avatar universal
Dear Mama,
I agree with the good doctor, you have got to have a special blood panel run for your thyroid levels, either at an endocrinologist's office or at the doc's office.  You are like the poster child of someone with a thyroid issue.  Practically everything you listed fits a person with thyroid diseases, like Graves, Addison's, and the others mentioned in previous posts.  A diseased thyroid can really wreck a person's life.  It is a serious problem and can be treated.  Untreated, you will never lead a normal life.  And there is a small chance that if you have cancer of your thyroid, it can kill you.

About your communication skills going haywire, expressing racial stuff and all, while that suggests a brain or neurological problem, it is also possible that sometimes when the body is under terrible stress, like if you are in chronic pain from a spine that has been damaged somehow, like I have, or if you have master glands like the thyroid goof up, it can distract your mind enough to where your communication can get real mixed up, which is a problem I have.

Most of the time when doctors draw blood and run some tests, they don't always run a full thyroid panel.  It is a special test, and you should definitely have that done.  There are websites devoted entirely to thyroid disease, because it is such a total body disaster and so very serious.  Some people are on disability that have it.  Visit those websites.

With that said, and if your thyroid comes back okay, since you've already had an MRI that came up normal, I agree with what the doctor posted, that you should have a CAT scan done, and not just of your head, face, and neck, but also of your body, too.  I also thought it was interesting that your iron levels were a little off one time, which can signal that some problem with absorbing nutrients is there, so when you have the thyroid blood panel done, you should also have them recheck the levels of all your vitamins, minerals, and electrolytes.  In addition, all your hormone levels should be checked, too, because there are other endocrine glands that can cause some of the problems you have, which also means an endocrinologist is really the doctor you should see first about the thyroid...he will be alert to other hormonal problems.  You should also revisit your gynecologist/obstetrician for an exam, in case you have a female problem like endometriosis or ovarian cysts.

One positive thing is, if it is indeed a thyroid problem, you can count your lucky stars that it isn't a brain tumor, because operations for those are quite risky and not always totally successful, and can create even more problems than you have already.  So, get thee to an endocrinologist FIRST and see what your thyroid panel shows from that particular blood test.  Then you can visit some of the other options mentioned here.  And let us know what happens with the thyroid thing, and be sure to visit their websites, to further educate yourself on just how bad that can be.
GG
Helpful - 0
674737 tn?1226539884
As well could you please read my second  post on this thread and give me any more ideas. I am at my wits end with pain issues and the confusion personality issues and no medical help some days I am wishing I didn't wake up in the morning. The doctors don't know what I have but don't care to find out. Ar first they said everything was cause by depression and anxiety then I did 2 psych evaluations with over 800 questions that was normal, said I had situational depression and fear for my future, but the still tried to blame on psychological until my fingers started to taper and visual muscle loss but they are trying to say they don't know what's psychological and what is the illness. I never had psychological issues before I got sick but now I do because there is something wrong in my body/brain. I have quit going to doctors because I was tired of being told it was in my head. I am actually scared to go because I have had such a bad experience. I don't know what to do anymore. What should I do I would never end my life but I am so frustrated, scared, no where to turn. I am scared I will tell the doctors about the personality changes and other psychological issues I have had which I know are because there is something wrong with my nervous system. I have even had hallucinations (visual and with smell). I had a neuros do the memory tests and I do so poor and then they say oh it's just depression. I don't know what to do.
Helpful - 0
674737 tn?1226539884
Could cushings or addisons cause muscle wasting,twitching and sensory issues?
Helpful - 0
675316 tn?1234215095
you should see an endocinologist, hormones can affect anything in your body. i know personally . try an endocrinologist and see if he can help
Helpful - 0
674737 tn?1226539884
With this additional information do you think I should still ask to see and endocrinologist. Thanks
Helpful - 0
674737 tn?1226539884
I for got to mention I get where my tonque goes bald and then heals over. I also have what my Dr. calls is hypersensive skin. I get numbness, tingling,burning too. I also have another question I don't twitch all of the time, daily but not constantly, would I have to be twitching while the emg was done for it to show. I got pregnant a week after my first  symptom and my illness was worse with pregnancy especially towards the end and right after I delivered I got so weak I could not lift my son when he was born or squeeze the neuros hand. They did a ncs and it was normal yet I could barley even feed myself. I was seen by a pysiotherapist who said my muscle tone was definitely abnormal and my hands were uneavenly wasted yet the emg is normal. I am a medical mystery. About a month after my son was born I got stronger and could lift him and went back to being able to do somewhat normal activities just muscles tiring really fast. I am really concerned as my throat feels like it's caving in when I swallow the food sticks and my throat is startying to make gurgling noises because it feels like the muscle is cramping. With these other things i have mentioned could it still be Cushings or Addisons disease. Also when I was pregnant and my symptoms were worse I had a postive ANA but after pregnancy did not. I have two sisters with Celiac and one with Reumatoid Arthritis and she also has the disease that attacks the saliva and tear ducts and dries them out. Could this also be a rare autoimmune illness. How can my MRI be normal when I have had such major personality and cognitive changes? Thanks for your help and answering my questions. I need to get some answers to treat my illness and I can't work but can't get disabilty with no diagnosis. So please let me know if this could be the Addisons and cushings sill with these symptoms. Thank you for your time
Helpful - 0
Avatar universal
Hi,

Yes it is very unusual that all your tests are normal with such wide ranging neurological symptoms.
Did you undergo X ray or CT scan of the spine?
Muscular dystrophies, motor neuron disease both upper and lower motor neuron disease, neuropathies, myopathies, thyroid dysfunction, Cushing’s disease and Addisons disease.
Have you undergone any endocrine testing?
I would suggest you to get yourself evaluated for endocrine disorders like Cushing’s disease and Addison’s disease by an endocrinologist.
Helpful - 0
Have an Answer?

You are reading content posted in the Neurology Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease