Opinions Please?

[toryoreo]

Hi I am a 24 year old female. I have chronic stiffness(not so much pain) in all major joints. Ankles, Hips(worst), Shoulders and jaw. I get asleep feelings in my limbs very easily and often. Everything always feels inflammed and stiff. I get migraines which we have linked to my horrible allergies. Since I have been on allergy shots they have subsided. I have had tons of blood work done. Rheumatic, ana, crp, esr, ssb, ssa, everything all normal. MRI of brain came back normal. I havent had one of the back yet. I also always have stiffness in my neck and shoulder area it almost feels like there is alot of pressure(tension). The neuro thought ms but then after mri says fybromyalgia. But he aslo says i have neuropathy. My EMG's were a little funky in the ulnar area. (But i am a hairdresser and use my hands alot) I saw a rhuematologist and he still believes it could be ms. He has put me on medicine for Fybromyalgia to see how that goes before we do more tests. I'm so tired of all this it's been 4 years and slowly progressed. I also don't sleep very well. Does anyone have any ideas?

[toryoreo]

after four years you do alot of research. i have same syptoms as you. but my b12 is fine. my lyme results came back and they are negative. so..back where i started. i may go see a specialist in tucson here in a little bit. they want to do mri of cervical and lumbar but im tired of the bills uugghh! well i hope yours is just the b12 that problem is common in women. ive been excersizing and sleeping better and drinking more water. ive had more energy and less pain sooo hopefully im just out of shape :)

[sjed9]

Toryoreo: You are very smart, I do have a "serious b12 difficency" said the Doc! I actually never wrote my two page of symptoms on here. ( sorry also i think i posted mine on your thread) I didn't know what i was doing. I have never joined something like this. I have physical pain, brain fog, mood issues, weakness, co-ordination,vision, bowel/bladder problems. Do you know that most people that have Ms also have a B12 difficency? When your body has a problem say MS or cancer it attacks the myelin shealth which helps make and store vitamin B12. Right now i am taking B12 and go back in a few weeks to see if i am able to absorb it. I have been tested for Lyme and i dont have anemia or thyriod probelm. My husband also hurts me when he tickles me, even though he says it's not hard at all!!

[toryoreo]

i mean havent tested for lyme. i called mt gp and hes ordering labs right now

[toryoreo]

thank you for your opinions and comments. i dont think they have tested for lupus. but the sytmptoms started the day after my wedding and before wedding i was walking at a park everyday for excersize and found a tick on me. they are big in az but i didnt think any here carried lyme disease. i will ask doctor. and they did do the trigger spot test for fibro my hips were really bad. my husband always tries to tickle my inner leg or my hips and it kills me. he said i didnt seem to have enough for fibro but it was a good day. and he didnt tell me what he was doing so i didnt know i was suppossed to be reacting.

[toryoreo]

im no doctor but they thought mine had to do with b12 but my b12 was 800 and something. but the vitamins may not work if your problem is your body doesnt hold the b12. yo may want to try the shots. your doctor should know this.

[Quixotic1]

Hi, and another welcome to the forum.  I would also like to see you post on the main page so you have your own discussion and people will find you.  Just copy the post you did, click on the green button "Post a question" at the top of this page and paste the same post you wrote here.

A quick answer is that I do not think that this sounds like MS, but we need more info.  MS does not directly involve the joints, not does it cause swelling of the thyroid nor of the lymph nodes.  We need to talk about which specialty would give you the best answers, since you have a long delay for specialty appointments.

Please post again and others will also be able to give their opinions.

Quix

[Quixotic1]

Great name!  I don't feel your story sounds like MS either.  I agree with Shell.  The history of many joints being painful and stiff is not a feature - ever - of MS.  That is a tip-off to look elsewhere.

The negative blood tests really point away from antoimmune disease.  I would encourage you and your doctors to look hard for evidence of Lyme Disease.  In my mind this means at least 2 Western Blots sent to labs skilled in running them for tick-borne illnesses.  The reason I point toward Lyme is the arthritis (pain and inflammation in multiple joints), the negative workup for rheum diseases, and the presence of some peripheral neuropathy.  The Lyme bug loves the joints, and adores the peripheral nerves.  MS never involves the peripheral nerves.  Though you may be quite right that the ulnar problem is related to your profession.

Lyme Disease is very common in North America.  The usual screening test (the one called the ELISA test) is not reliable and the more more advanced tests must be done.  But, often the diagnosis is made more on the history and physical.  Lyme Disease is a very close mimic of MS, but it involves more of the rest of the body, especially the joints, peripheral nerves and skin.

I strongly recommend that you post over on the Lyme Forum and see what they think.  I think this fits far better than MS or Fibro.

I wish you good luck.

Quix

[essdipity]

Welcome to the forum, if you haven't been welcomed already. Please consider moving your post to a new thread of its own. That way each has a better chance of getting appropriate comments and feedback.

I will say here, however, that the awful symptoms you describe, as a whole, do not sound like MS. MS does not produce joint problems, all-over pain or swollen glands.

Do you know what your B12 level is? This is not rocket surgery to find out, so if this is at the bottom of your problems, they could have and should have pinpointed that years ago. Low B12 can indeed cause horrible symptoms, but the good news is that is fixable. Not by vitamin pills, however. Injections are the only really effective way to go, unless the deficiency is minor, in which case the symptoms shouldn't be too bad either.

I think you need a specialist, maybe more than one. An endocrinologist, for one, and a rheumatologist. Your doctor is not confidence-inspiring.

Best of luck and let us know.

ess

[sjed9]

Hello,
I am 28 years old and have had my life turned upside down for 3 years, i had to stop working, i have no social life all due to my "chronic illness" which is still undiagnosed. I live in canada... the home of the free medical!!! This translates to ,no second opinions and every test takes about two months to come back... overworked doctors don't have the time to "listen" .. and i am 28 year old i should be healthy. I look "normal" but feel like I am 90 years old. i have got proggresivly worse over three years. I was always overly active, non stop person and now i spend my life sitting or lying down and with chronic pain, joints, hands are seizing up, widespread pain( i hurt everywhere) mental confussion, example : ( things like "did i just wash my hair? I don't remember so i'll do it again!!)  major mood swings,which is not normal for me ever, not even while i am in PMS. Loss of balance, coordination, swollen thyroid and cervical glands and more "weirdisms" . Recently my doctor found a B12 deficency and thinks he has finally fixed my problem. But I really dont think so, have been taking the vitamins and maybe for a short while during the day i feel alert, but nothing else. From my research, people with MS usually have a B12 difficiency as well. I HAVE to wait yet another 5 weeks to see the doc. ( The joys of socilized medicine) Don't get me wrong it is a great thing, but it doesn't seem to be easy for me to get diagnosed. They want to blame everything on Depression, then it was CF, then it was Fybra... now he found B12 dif.. so now i dont have those things. Do you think i should push for a neuro and MRI??? Any input would help thanks.

[uk2]

Hi

i have been on the same journey and last yr i went private to a rheumy as the neuro said he thought fibro and not MS but since then my GP says no its not fibro and another 4 drs say no its not fibro including the pain clinic as i have alot of one sided nerve pain not all over pain and stiffness i have researched fibro alot and i would say the stiffness and tirdness and not being able to sleep and stiffness in all your joints classic of fibro so its good you are with the rhuemy did he do a tender point test? if so what did you score?

sam

[sllowe]

Hi there,

Welcome to the MS forum.  I'm no Dr. but it doesn't sound like MS. I'm glad you are working with a reumy on this.

Did you get relief from meds for fibro? Also, have you been tested for Lyme? Not wanting to steer you away, just trying to get more info.

I'm sure you are very frustrated - 4 yrs with not relief is enough to try any one's patience.  I'd have to put the Dr. on the spot and ask for a 2nd opinion on the fibro - go to another rhuemy if you can...

Hopefully some others will chime in - we get a little thin on the weekend,
ttys,
shell