MS?

[Yamahaulin]

Hi all...  In November of 2009 I was diagnosed with stage 4 NHL (non-hodgkins lymphoma) which in short is a cancer of the blood that typically reveals itself through low white blood cell counts and often lumps in the lymph nodes and eventually cancerous cells in the bone marrow (stage 4).  I'm in my 3rd year of treatment and although most doctors say NHL is thought to be incurable, I currently have no evidence of desease.

So here's my question.  Over the past 5 years or more I've had symptoms that sound MS like to me and lately they seem to be getting worse.  The worst of which is extreme fatigue, numbness in the two smallest fingers of both hands, numbness in the two smaller toes of both feet, occationally I wake with the left side of my face feeling numb, joint pain, blured vission and the feeling that my right eye is week, some minor memory loss, and occational boutes with extreme back pain and muscle spasims.

Initially I wrote a lot of these symptoms off as neropothy and side effects from the cancer treatments but the truth is that many of these syptoms were there before I was diagnosed with cancer and the combination of symptoms seems MS like to me.  I'm not a doctor so I probably shouldn't speculate but the shoe seems to fit.

  

[summerluvr]

Hi there

I have blood / bone marrow cancer (multiple myeloma) also "incurable" but am in remission after stem cell transplant last summer. It is a cancer of the plasma cell.

The reason I post on this board is because my symptoms were suggestive to MS, and I went a few years with no diagnosis posting here, and then got very ill and was eventually diagnosed with stage II MM. (there are only three stages for MM though)  I had 50 % cancer plasma cells in my bone marrow biopsy and some other big issues like  anemia  low counts, and high number of cancer cells in my blood.

Now from treatment I have "atypical peripheral neuropathy" which is a known side effect of many myeloma drugs.  Also circulation issues are common from the meds.

My doctor has again diagnosed me with Raynauds, a circulation issue that causes pins and needles, numbness, and the very distinct colour changes (blue, to white, to red as hands warm up) I get it in my feet sometimes too.

Good luck on your treatment.  I hope you have a very long remission! You have been through the hard part already!  

I wouldn't say going to chemo is like going to the spa, my hospital doesn't even feed you (but then again who feels like eating) but they are doing a complete overhaul of the chemo daycare, I should suggest manicures, I like that idea :D   The nurses are all great there though. ANd the recliners make you fall asleep.

[Sparkysarah]

Just to join the others in saying welcome to the forum and please never never feel you are being selfish talking about your own issues.  I think that someone said recently that when we look at someone else's difficulties we would rather keep our own and I can say that having stage 4 NHL is no party.

So we are very pleased to hear from you and I am sorry that you appear to be experiencing additional neurological symptoms that are causing you additional concern. It is very difficult when you are still going through treatment to no if anything is a side effect, but as others have suggested it will be worth explaining exactly what is going on in your body, to your oncologist. I am sure that if there is a concern that there is something neurological, your dr will refer you to a further specialist.

Look forward to hearing back from you in April, take care.

Best wishes

Sarah

[Ojibajo]

That's so funny that you call it the day spa, because I said almost exactly the same thing when I was at the infusion clinic! I sat in a recliner chatted with other patients and some cosmetologist even gave me a manicure! When they apologized that it took so long to get my meds up from the pharmacy, I told them, "that's okay, I would rather be here than at work anyway!" I guess I'm just warped like that.

I hope that your April treatments go well and that you are doing well over all! Take care and keep us posted!

[Yamahaulin]

Thanks All...  I very much appreciate the feedback.  I have discussed some of my symptoms with my oncologist but I need to bring it up again.  I start another round of treatments over the 4 weeks of April so I'll be sure to sit with her and discuss in detail.  I'm getting rituxen treatments so they're easy.  The side effects of the steroids are actually worse than the cancer treatments.  I call it my day at the spa because going to the cancer center is actually more enjoyable than going to work.   ;-)

Anyway, it feels very sellfish to talk about my issues when you all are struggling with your own, so I'll post up again once I've seen my doctor.  Until then I hope you all feel great and I wish you all the best of heath...

[sllowe]

Hi Yama,

I'm sorry about the NHL, but it's nice to hear no evidence showing for you 3 years in.

Question for you - Have you discussed your current symptoms with your treating doctor?  If so, what was said. I do feel strongly you will be served best by doing so.

So many diseases have similiar symptoms as MS. I hope it's nothing new for you to have to contend with - but so much of what you describe sounds associated with your current condition.

Please know you are welcome here no matter what this is. We are glad to have you and hope to help and support you.

Thanks for joining us!
-Shell

[LisaJF]

Hi there Yamahaulin.

I am sorry to hear the health issues you are going through.  My son had NHL K-1 Anaplastic Large Cell NHL, stage I.  When he was on chemotherapy, one of the five chemotherapy agents the oncologist administered, "Vincristine" gave him neurological side effects which affected his gait, sensory symptoms just as you described.  He was also fatigued as well.  

I agree with Bob that you should visit a Neurologist and find out what's going on.  My best wishes to you. Please let us know how you are doing.

Lisa

[HVAC]

Welcome. If it were I the first person I would talk to is my GP. You usually need a referral to a Neurologist anyway. You also need the right Neurologist. They Specialize so you can't just pick one out of the yellow pages. I am no Doctor but it could be many things. There are many things that act like MS. MS is usually unilateral meaning you do not have the same symptoms on both sides of your body at the same time. MS is Neurological and does not usually cause joint pain. But you know your body and if you feel strongly something else is wrong you should listen to your gut.

The first thing they should look at is your reflexes and a regular neurological exam. Walking heel to toe, standing with eyes closed, pushing and pulling on both legs, touching your finger to your nose, etc. These tell the doctors if signals are cut off anywhere. Then they go from there. The testing unlike cancer can take a long time. Some times months or years. It also may take awhile to get into a Neurologist. Some people get in right away. I had to wait months due to shortage in our area. No one explained this and I was rather angry until I understood.

My GP picked up on my Neurological on my yearly exam. Then she sent me to a Neurologist. He sent me for a brain MRI looking for other things and found evidence of MS. He was leaving his practice and sent me to another Neurologist. She did more test which showed MS but she said I did not have MS. She sent me to a Neuro Opthamologist  who said in the future I would be diagnosed with MS. Then my GP sent me to a MS Specialist. This was 9 months from the first Neurologist and he did another MRI and a bunch of blood work which all ruled out other illnesses. Two years later he did another MRI and a lumbar puncture and I was diagnosed with MS. It was along process of eliminating all other possibilities.

There are no tests to rule MS in or out. You can have negative MRIs and LPs and have MS and you can have positive tests results like me and can't get diagnosed. Just be prepared the diagnosis can be a roller coaster and it may turn out to be something else all together.

Keep us posted. If you have any other concerns please ask or vent.

Alex

[COBOB]

I think you should see a neurologist.  I would be a bit surprised if it was MS because of the symmetric sensory symptoms in both the hands and feet.  Have they done an MRI of your brain as part of the NHL diagnostics?

Even if you remove NHL from the equation, MS can cause blurry vision from optic neuritis, but usually one eye at a time.  Bilateral optic neuritis is more consistent with NMO than MS.  Joint pain is also an odd symptom.  It can be caused by something other than MS, but when joint pain is an initial symptom, things like Lyme's Disease need to be considered and ruled out.  

Since most of the symptoms seem to be neurological, you may need a neurologist to untangle what is really going on.

Bob