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pollianna
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/23/2010 10:46 AM (GMT -7)   
For many years now I've been experiencing strange symptoms. Last fall I developed migratory joint pain which quickly led to muscle cramping and tingling. My Dr. wasn't taking things too seriously until he realized that I'd also had a low platelet count for the previous 7 years.
He referred me to a rheumatologist with the following list of symptoms:

positive ANA (although it was low and not of a pattern normally consistent with lupus)
migrating joint pain
small muscle cramps throughout body
tingling/numbness in face/hands/arms/legs/back and feet
low platelet count for past 7 years
history of pleurisy
history of nasal ulcers
sensitivity to sun (rash develops if overexposed)
fatigue
mental fog
extremely dry eyes at night
heart palpitations


According to the research I've done, my symptoms all pretty much add up to a lupus diagnosis. The rheumatologist though felt that the ANA results, although positive, were simply not indicative of lupus. she could not rule it out, but thinks that perhaps my symptoms are more indicative of MS. (She detected abnormally brisk reflexes and problems with urinary retention and urgency).

Last week I woke up with my hand and arm completely numb. This moved to cover one side of my entire body from forehead to foot...numbness and tingling...some areas so numb I could pinch and not feel.

I went to emergency and was pretty much dismissed when a stroke was ruled out. My family Dr. has agreed to refer me to a neurologist. I live in Canada and we must wait months and months to see specialists.

I'm now tingly all over with creeping sensations up my one side and have tiny cramps that run through various muscles of my body regularly.

Anyway, I'm very frustrated and just wanted some other opinions regarding my list of symptoms and the possibility of them actually being related to lupus. The rheumatologist did mention that she did not want to diagnose too early or without enough evidence as there were many implications to such a diagnosis such as, insurance and such. However, she did not book me back for a follow-up appt, which tells me she really doesn't think it's lupus.
I'm at the point, where I just want a diagnosis so I can wrap my mind around something solid.

Thanks for any help anyone can offer here.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 4/23/2010 11:03 AM (GMT -7)   
Many diseases have overlapping symptoms, making if difficult and time-consuming to diagnose them. Unfortunately, in your case it sounds as though MS & Lupus symptoms are both present. Some rheumy's are very hesitant to dx lupus, as there are a multitude of other auto-immune diseases that have overlapping symptoms -- some rheumies dx mainly on bloodwork, while others will include symptoms if the bloodwork isn't quite conclusive. Unfortunately, both MS and Lupus are the dx of last resort, used only if nothing else fits. I would not be too concerned about not having a proper dx --

What I would be concerned about is not having anyone address the symptoms you are having. I don't know if a Canadian GP is allowed to treat your symptoms, but I do know that often dx is determined by how we react to different treatments. The tingling does sound like something a neurologist would be best for, the way you describe it doesn't quite match the lupus neuropathy.
Can your GP do a brain MRI & look for the most obvious signs of MS while you wait for the neuro appt? You might also check www.lupus.org and www.nationalmssociety.org for more info.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 4/23/2010 11:15 AM (GMT -7)   
Hi! Pollianna,
I am so glad you found us, and you will find you have so much in common with this forum. Maybe your dr's office staff just overlooked giving you an appt, so I would call them back and ask. Your symptoms sound so much like mine. I see a rheumy every 6 months, and am seeing my neuro again in two weeks. I am still falling quite abit and was newly diagnosed with degenerative arthritis, too. I am sorry you have to wait so long to see a specialist. Say what you will about HMOs and healthcare in the US, but I never even had to wait more than a few weeks for an MRI. On my first visit, he mentioned the possibility of a rare, but not unheard of dx. of Lupus and MS together, as my ataxia and falling are abit uncharacteristic, but he wanted to do a spinal tap since I didn't have plaque areas. I hope you didn't even hesitate to go to the ED yeah And don't ever hesitate to go again! That's what they are for. One thing that I would recommend, is to start a diary of your symptoms, with time, date and circumstance. I use a dollar store planning calendar with big boxes. And ask for copies of all your records that would be important for the specialist to see, and put them in a notebook. Yes, the drs. will share records, but it gives you something to ask specific questions about. I called mine my misery log. And remember to take it with you whenever you need to go to the dr, or revisit the emergency dept. Tell the docs you are being evaluated for autoimmune disease and have a low platelet count history. It will immediately direct their thinking to what labs to order, and what serious things to look for. We are our own best advocate. In med school they teach lupus as "the great imitator" and the tv show House uses lupus as a story line frequently tongue . Don't give up and don't despair, and keep us posted,
hugs,
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


pollianna
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/23/2010 11:24 AM (GMT -7)   
Thank You so much Lynnwood and suetoo for your responses! You both give some really great advice. Yes, I saw my Dr. today and he does acknowledge that I need an MRI & appt. with a neurologist....he wasn't able to give me any idea when, unfortunately. I saw a neuro about 5 yrs. ago when I was having similar symptoms to a lesser degree (MRI came out fine then and the symptoms resolved til now) and it took me about 6 months to get in to see him...so I'm hoping for a shorter wait this time.

I'll keep you posted......thank you both for responding! It's so comforting knowing others have similar experiences!
Big hugs to both of you...and lots of healing energy being sent your way!
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